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Hi : You have a lot of questions and I'll try to answer some of them for you. But I'll ask you some, too :) First let me ask you if you like your neurologist? It sounds as if your neuro is very cautious. That's not a bad thing but right now it sounds like you are in need of something more concrete, especially in light of your short term disability running out soon. Do you plan to apply for Social Security Disability (SSDI)? If so, have you asked your doc if she will fill out forms for SSDI? Yes, call your neuro every time your leg goes numb. Call every time something happens. The doctor needs to know when things happen so she can

document. You need to help her by letting her know what's going on. You should keep a journal of symptoms, when they happen and how long it lasts. For example, if your left leg goes numb and your right arm tingles you should log it in your journal. My neuro said he wanted to know if symptoms happened on opposite sides. I can't remember why right now though. :) But it means something to a good neuro. You said you have "bouts of debilitating fatigue, leg pain, leg cramps, numbness, tingling, memory loss...". So if it's coming in "bouts" you may be experiencing short exacerbation. Or do you mean it comes and goes within the day? Document what is happening and call the doctor so she can document it too. Let the doc know when things happen. It may help you get a diagnosis sooner. My evoked potentials didn't show anything. And my lumbar puncture was positive on only band. My neuro based my diagnosis on my brain MRI, the LP results, and the documentation. I'm sorry I'm having a hard time explaining myself today (it's not a clear thinking day). If you haven't already already looked through the "files" and "links" on the group homepage then I would encourage you to do so. There's some great info there. I'm glad you found us! Sharon pebbles1175 wrote: Hello, everyone! My name is and I just signed up to this group. I was "unofficially" diagnosed with MS in December of '05. I presented with an episode of optic neuritis, and was sent by my opthamologist to a neurologist where an MRI was done. Seven brain lesions were found, and I was started on Avonex in January. I am 32 years old with 2 children and a step child. I used to work full time, but since February, I have been off on "short term" disability. I have until July to return to work before this benefit offered through my work place expires. I hope to find support here from others going through the same thing. I get so frustrated because my neurologist won't come right out and say that I have MS, just that I have "presented with one episode and have MRI consistent with MS and I am at high risk for developing MS within 5 years" She has

ordered another MRI next month, along with a test called "evoked potentials" and she said possibly after that she will do a lumbar puncture. I have gorged myself on information, and I do believe that I have MS, and am frustrated because noone will give me an "official" diagnosis until I have another "exacerbation" or the MRI and evoked potentials show something. But what exactly IS an "exacerbation" or an "episode"? I have bouts of debilitating fatigue, leg pain, leg cramps, numbness, tingling, memory loss, you name it. But this is everyday. Are these exacerbations or what? Do I call my doctor everytime my leg goes numb? She prescribed my something alled baclofen, which according to the information, is a medication used for MS. I'm on Avonex, which is for MS, so why won't she just tell me I have MS??? I have suffered severe depression and was placed on medication and am seeing a therapist. I have periods where I get

so dag gone angry and frustrated. I didn't mean to ramble, just wanted to brief everyone on myself and my situation. I hope this group will be a place where I can find some one who understands, because, as much as my family tries, I get frustrated because they just don't understand. Thank you for listening.~ Sharon (MSersLife creator/owner) Bloom where you are planted.....

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

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I already love this group! Thank you for responding. As to your first question, no I don't really like my neurologist. I was referred to her by my opthamologist. (sp?) I have applied for my SSDI, but obviously that takes time. I can extend my short term, but my salary will drop to 60%. I asked her about doing this, and she said I needed to return to work, that it was the best thing I could do. Now, let me explain something here. I work at a level 6 SUPER maximum security prison, dealing one on one with inmates who have shown to be problematic at lower level maximum security prisons. It is a very stressful job to say the least. And as you said, I was having some not so clear thinking days myself, and my vision was severely impaired after my episode with optic neuritis. The vision has not returned completely yet. I had deadlines that I was missing at work, was not able to think clearly, see clearly, remember things clearly, was consistently fatigued, and I felt it was dangerous for me to work. I tried to explain this to her, but she just kind of brushed it off, and said I needed to go back to work, and talk to my supervisors about "modifications" that could be made to accommodate me. I personally do not think that any accommodations could be made to enhance my safety and the safety of those around me, given my line of work. I'm embarrassed by this, because I honestly did love my job prior to becoming "ill" for lack of a better term. I noticed gradual changes at first, but chalked them up to stress, getting older, being scatter brained, etc. Then when the ON set in, I went to my local ophthalmologist, who explained to me the relation between ON and MS. I live in an extremely rural area, and our health care locally, well just sucks, basically. So he referred my to another ophthalmologist/neurologist (6 hours away at UVA) Who AGAIN explained the probability that MS was the likely cause. He did several tests of my eyes, and ordered an MRI and referred me to a neurologist that was also at UVA (6 hours away from home). So I went to see her, she looked at the MRI, did a neurological exam, started me on Avonex and told me to come back in 3 months that she wanted to do another MRI of the spinal cord area. So a few weeks before my appt. I called to see if I could come early and have the MRI so I could see her after that and save me another trip. Her office staff said no. So, I went up there again about 2 weeks ago, she did another neurological exam, and scheduled the MRI and evoked potential tests for next month. which means ANOTHER trip to UVA. She asked me if I was having any other "neurological symptoms"....now I'm not a neurologist, and I was dumbfounded. I thought she should have asked me more specifically, but anyway I don't do good in Doctors appointments, I get nervous and emotional, and feel like very ignorant. I did manage to get across to her about the leg pain, and she prescribed baclofen. I am considering switching neurologists, and have looked into going to Wake Forest in NC. But I hate to switch up in the middle of everything, but I also realize how important it is to have a good relationship with your doctor. And she really does not impress me. I have looked at a few of the links on the home page, and I like your idea of the journal. I will start that immediately. Thank you so much for responding.

~

Re: New member

Hi :

You have a lot of questions and I'll try to answer some of them for you. But I'll ask you some, too :) First let me ask you if you like your neurologist? It sounds as if your neuro is very cautious. That's not a bad thing but right now it sounds like you are in need of something more concrete, especially in light of your short term disability running out soon. Do you plan to apply for Social Security Disability (SSDI)? If so, have you asked your doc if she will fill out forms for SSDI?

Yes, call your neuro every time your leg goes numb. Call every time something happens. The doctor needs to know when things happen so she can document. You need to help her by letting her know what's going on. You should keep a journal of symptoms, when they happen and how long it lasts. For example, if your left leg goes numb and your right arm tingles you should log it in your journal. My neuro said he wanted to know if symptoms happened on opposite sides. I can't remember why right now though. :) But it means something to a good neuro. You said you have "bouts of debilitating fatigue, leg pain, leg cramps, numbness, tingling, memory loss...". So if it's coming in "bouts" you may be experiencing short exacerbation. Or do you mean it comes and goes within the day? Document what is happening and call the doctor so she can document it too. Let the doc know when things happen. It may help you get a diagnosis sooner.

My evoked potentials didn't show anything. And my lumbar puncture was positive on only band. My neuro based my diagnosis on my brain MRI, the LP results, and the documentation. I'm sorry I'm having a hard time explaining myself today (it's not a clear thinking day).

If you haven't already already looked through the "files" and "links" on the group homepage then I would encourage you to do so. There's some great info there.

I'm glad you found us!

Sharon

pebbles1175 wrote:

Hello, everyone! My name is and I just signed up to this group. I was "unofficially" diagnosed with MS in December of '05. I presented with an episode of optic neuritis, and was sent by my opthamologist to a neurologist where an MRI was done. Seven brain lesions were found, and I was started on Avonex in January. I am 32 years old with 2 children and a step child. I used to work full time, but since February, I have been off on "short term" disability. I have until July to return to work before this benefit offered through my work place expires. I hope to find support here from others going through the same thing. I get so frustrated because my neurologist won't come right out and say that I have MS, just that I have "presented with one episode and have MRI consistent with MS and I am at high risk for developing MS within 5 years" She has ordered another MRI next month, along with a test called "evoked potentials" and she said possibly after that she will do a lumbar puncture. I have gorged myself on information, and I do believe that I have MS, and am frustrated because noone will give me an "official" diagnosis until I have another "exacerbation" or the MRI and evoked potentials show something. But what exactly IS an "exacerbation" or an "episode"? I have bouts of debilitating fatigue, leg pain, leg cramps, numbness, tingling, memory loss, you name it. But this is everyday. Are these exacerbations or what? Do I call my doctor everytime my leg goes numb? She prescribed my something alled baclofen, which according to the information, is a medication used for MS. I'm on Avonex, which is for MS, so why won't she just tell me I have MS??? I have suffered severe depression and was placed on medication and am seeing a therapist. I have periods where I get so dag gone angry and frustrated. I didn't mean to ramble, just wanted to brief everyone on myself and my situation. I hope this group will be a place where I can find some one who understands, because, as much as my family tries, I get frustrated because they just don't understand. Thank you for listening.~

Sharon (MSersLife creator/owner)

Bloom where you are planted.....

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

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Hi I was wondering did your insurance question you a lot when your

doc had you go on Avonex? Avonex is expensive and it surprises me with

you not having a diagnosis.

When my MS hit me in Aug of 99 I had no idea what MS was either and I

did like you are now trying to learn as much as I could. Since getting

my MS I NO longer have any balance so I use a walker all the time. I

also have bladder trouble with my MS.

I was employed by Lockheed- and I used their short term and long

term disability. I am still on their long term. I am also on Social

Security. I was told by the people paying for my long term that I

needed to apply for Social Security. I was accepted my

first time which really surprised me. When you have kids like you do if

you are accepted not only you get Social Security pay but also your

kids will also. They know you have to your kids to support so you get

that to help out. They get Social Security pay until they are 18.

I had gone to a local MS group for a while and one thing I learned was

that as soon as you become ill you need to go ahead and apply for

Social Security. In fact I think you should do it now. because when you

apply for Social Security their is a waiting period before you will be

looked at by them. The good thing about applying as soon as you become

ill is that if they can determine you could were ill enough when you

applied to receive funs at that time and you are accepted you will

probably get back pay to that point when you applied. Your kids will

also get back pay.

This MS is very unpredictable because you may feel good for a while and

then have your MS troubles hit you out of the blue one day. I often

have day's when I feel why am I still just sitting around home? and

then I get those bad spells and then I am very happy at that point to

have it. I am sure with my MS I would probably have to go from job to

job not knowing if my health would hold out long enough to make it

worth my while.

I have always enjoyed working so the Social Security and also getting

disability funds from Lockheed has been a big help to my family.

I hope all this makes since

Bill

Damron wrote:

I already love this group! Thank you for responding. As to your

first question, no I don't really like my neurologist. I was referred

to her by my opthamologist. (sp?) I have applied for my SSDI, but

obviously that takes time. I can extend my short term, but my salary

will drop to 60%. I asked her about doing this, and she said I needed

to return to work, that it was the best thing I could do. Now, let me

explain something here. I work at a level 6 SUPER maximum security

prison, dealing one on one with inmates who have shown to be

problematic at lower level maximum security prisons. It is a very

stressful job to say the least. And as you said, I was having some not

so clear thinking days myself, and my vision was severely impaired

after my episode with optic neuritis. The vision has not returned

completely yet. I had deadlines that I was missing at work, was not

able to think clearly, see clearly, remember things clearly, was

consistently fatigued, and I felt it was dangerous for me to work. I

tried to explain this to her, but she just kind of brushed it off, and

said I needed to go back to work, and talk to my supervisors about

"modifications" that could be made to accommodate me. I personally do

not think that any accommodations could be made to enhance my safety

and the safety of those around me, given my line of work. I'm

embarrassed by this, because I honestly did love my job prior to

becoming "ill" for lack of a better term. I noticed gradual changes at

first, but chalked them up to stress, getting older, being scatter

brained, etc. Then when the ON set in, I went to my local

ophthalmologist, who explained to me the relation between ON and MS. I

live in an extremely rural area, and our health care locally, well just

sucks, basically. So he referred my to another

ophthalmologist/neurologist (6 hours away at UVA) Who AGAIN explained

the probability that MS was the likely cause. He did several tests of

my eyes, and ordered an MRI and referred me to a neurologist that was

also at UVA (6 hours away from home). So I went to see her, she looked

at the MRI, did a neurological exam, started me on Avonex and told me

to come back in 3 months that she wanted to do another MRI of the

spinal cord area. So a few weeks before my appt. I called to see if I

could come early and have the MRI so I could see her after that and

save me another trip. Her office staff said no. So, I went up there

again about 2 weeks ago, she did another neurological exam, and

scheduled the MRI and evoked potential tests for next month. which

means ANOTHER trip to UVA. She asked me if I was having any other

"neurological symptoms"....now I'm not a neurologist, and I was

dumbfounded. I thought she should have asked me more specifically, but

anyway I don't do good in Doctors appointments, I get nervous and

emotional, and feel like very ignorant. I did manage to get across to

her about the leg pain, and she prescribed baclofen. I am considering

switching neurologists, and have looked into going to Wake Forest in

NC. But I hate to switch up in the middle of everything, but I also

realize how important it is to have a good relationship with your

doctor. And she really does not impress me. I have looked at a few of

the links on the home page, and I like your idea of the journal. I will

start that immediately. Thank you so much for responding.

~

-----

Original Message -----

From:

Sharon Marsden

To:

MSersLife

Sent:

Thursday, June 01, 2006 7:46 PM

Subject:

Re: New member

Hi :

You have a lot of questions and

I'll try to answer some of them for you. But I'll ask you some, too

:) First let me ask you if you like your neurologist? It sounds as

if your neuro is very cautious. That's not a bad thing but right

now it sounds like you are in need of something more concrete,

especially in light of your short term disability running out soon. Do

you plan to apply for Social Security Disability (SSDI)? If so, have

you asked your doc if she will fill out forms for SSDI?

Yes, call your neuro every time

your leg goes numb. Call every time something happens. The doctor

needs to know when things happen so she can document. You need to help

her by letting her know what's going on. You should keep a journal of

symptoms, when they happen and how long it lasts. For example, if

your left leg goes numb and your right arm tingles you should log it in

your journal. My neuro said he wanted to know if symptoms happened on

opposite sides. I can't remember why right now though. :) But it

means something to a good neuro. You said you have "bouts of

debilitating fatigue, leg pain, leg cramps, numbness, tingling, memory

loss...". So if it's coming in "bouts" you may be experiencing short

exacerbation. Or do you mean it comes and goes within the day?

Document what is happening and call the doctor so she can document it

too. Let the doc know when things happen. It may help you get a

diagnosis sooner.

My evoked potentials didn't show

anything. And my lumbar puncture was positive on only band. My neuro

based my diagnosis on my brain MRI, the LP results, and the

documentation. I'm sorry I'm having a hard time explaining myself

today (it's not a clear thinking day).

If you haven't already already

looked through the "files" and "links" on the group homepage then I

would encourage you to do so. There's some great info there.

I'm glad you found us!

Sharon

pebbles1175 wrote:

Hello,

everyone! My name is and I just signed up to this group.

I was "unofficially" diagnosed with MS in December of '05. I

presented with an episode of optic neuritis, and was sent by my

opthamologist to a neurologist where an MRI was done. Seven brain

lesions were found, and I was started on Avonex in January. I am 32

years old with 2 children and a step child. I used to work full

time, but since February, I have been off on "short term"

disability. I have until July to return to work before this benefit

offered through my work place expires. I hope to find support here

from others going through the same thing. I get so frustrated

because my neurologist won't come right out and say that I have MS,

just that I have "presented with one episode and have MRI consistent

with MS and I am at high risk for developing MS within 5 years" She

has ordered another MRI next month, along with a test called "evoked

potentials" and she said possibly after that she will do a lumbar

puncture. I have gorged myself on information, and I do believe that

I have MS, and am frustrated because noone will give me

an "official" diagnosis until I have another "exacerbation" or the

MRI and evoked potentials show something. But what exactly IS

an "exacerbation" or an "episode"? I have bouts of debilitating

fatigue, leg pain, leg cramps, numbness, tingling, memory loss, you

name it. But this is everyday. Are these exacerbations or what? Do I

call my doctor everytime my leg goes numb? She prescribed my

something alled baclofen, which according to the information, is a

medication used for MS. I'm on Avonex, which is for MS, so why won't

she just tell me I have MS??? I have suffered severe depression and

was placed on medication and am seeing a therapist. I have periods

where I get so dag gone angry and frustrated. I didn't mean to

ramble, just wanted to brief everyone on myself and my situation. I

hope this group will be a place where I can find some one who

understands, because, as much as my family tries, I get frustrated

because they just don't understand. Thank you for listening.

~

Sharon (MSersLife creator/owner)

Bloom

where you are planted.....

Talk is cheap. Use Yahoo! Messenger to make

PC-to-Phone calls. Great

rates starting at 1¢/min.

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Wow, does this sound like the story I brought to this group about a month ago or what? Except I was put on Rebif! Hang in there girl. I get fustrated about the same thing every day! My Neuro says I have "single sclerosis". What a hoot!!!!!!! Tammypebbles1175 wrote: Hello, everyone! My name is and I just signed up to this group. I was "unofficially" diagnosed with MS in December of '05. I presented with an episode of optic neuritis, and was sent by my opthamologist to a neurologist where an MRI was done. Seven brain lesions were found, and I was started on Avonex in January. I am 32 years old with 2 children and a step child. I used to work full time, but since February, I have been off on "short term" disability. I have

until July to return to work before this benefit offered through my work place expires. I hope to find support here from others going through the same thing. I get so frustrated because my neurologist won't come right out and say that I have MS, just that I have "presented with one episode and have MRI consistent with MS and I am at high risk for developing MS within 5 years" She has ordered another MRI next month, along with a test called "evoked potentials" and she said possibly after that she will do a lumbar puncture. I have gorged myself on information, and I do believe that I have MS, and am frustrated because noone will give me an "official" diagnosis until I have another "exacerbation" or the MRI and evoked potentials show something. But what exactly IS an "exacerbation" or an "episode"? I have bouts of debilitating fatigue, leg pain, leg cramps, numbness, tingling, memory loss, you name it. But this is

everyday. Are these exacerbations or what? Do I call my doctor everytime my leg goes numb? She prescribed my something alled baclofen, which according to the information, is a medication used for MS. I'm on Avonex, which is for MS, so why won't she just tell me I have MS??? I have suffered severe depression and was placed on medication and am seeing a therapist. I have periods where I get so dag gone angry and frustrated. I didn't mean to ramble, just wanted to brief everyone on myself and my situation. I hope this group will be a place where I can find some one who understands, because, as much as my family tries, I get frustrated because they just don't understand. Thank you for listening.~

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Welcome aboard, Lila! Thank you for your post! n, wMS

New Member

,Nice to meet you. My name is Lila and I have has MS for 8 years this month. I was also 32 years old when I was diagnosed. My son was 6 months old when I was diagnosed. I missed a lot of his early years because I was so ill. I started out with optic neuritis also. Your neuro probably does believe you have MS or they wouldn't have put you on Avonex and baclofen.If you are not happy with your doctor then I think you should find another one. It is very important you have a good relationship with your doctor.Just wanted to introduce myself. Welcome to the group. ~Lila~

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No, my insurance didn't really question me a lot. I had to fill out a lot of paperwork, but the Avonex support people were great helping with that. Our insurance has 3 tiers, though, and naturally, the Avonex was the 3rd tier which means I have to pay 20%, which equals $200 per month. I can also go to the long term disability in August, but like I mentioned before, my salary will drop to 60% and my position is no longer guaranteed should I have to return to work. I have already filed for my social security, and I believe my primary care physician and my urologist will assist me much more than my neurologist. She's dead set that I should return to work. I know what you mean about having a good few days or weeks, then BAM! your down for the count. When I do have the good days, I'm riddled with guilt because I think that I should be working, but I know that as you said, it is so unpredictable when I feel okay and when I do not. I have a hard time even going out in public, because I constantly run into people I know or worked with and they always ask me how I am and say how good I look. I always smile and say "I'm good, how are you doing" because I don't think they REALLY want to know how I am, and I feel like they're scrutinizing me and looking me up and down feeling as if I'm "faking" or whatever. I know a lot of this is paranoia on my part, but I am so self conscious about the whole deal and really would prefer to be able to work. I'm really disappointed and surprised at my neurologist for not taking more of an interest in why I felt like I cant' work. It was like she didn't even want to discuss it, she just said that my employer would be required to make accommodations for me to return to work. But, honestly, what accommodations can they make? Give me a couch in my office so I can lie down when I'm wiped out?? Have someone read me all the fine print I'm required to read and can't see? Massage my legs when they cramp? Type out my reports when my hands don't cooperate like they should? Hand me tissues when I cry? GET REAL!! What you said does make sense, and thankfully, IF I am approved for my disability, I will also be able to stay on the long term disability retirement offered through my job. As I mentioned, I work(ed) at a prison, so it is a state position, and the benefits are good in that aspect. I just hope that I am approved. My family could not make it on my husbands income alone, and my long term will have to kick in in July, and there goes my position should I have to return to work. Thank you so much for listening. As I said, I love this group already.

~

Re: New member

Hi :

You have a lot of questions and I'll try to answer some of them for you. But I'll ask you some, too :) First let me ask you if you like your neurologist? It sounds as if your neuro is very cautious. That's not a bad thing but right now it sounds like you are in need of something more concrete, especially in light of your short term disability running out soon. Do you plan to apply for Social Security Disability (SSDI)? If so, have you asked your doc if she will fill out forms for SSDI?

Yes, call your neuro every time your leg goes numb. Call every time something happens. The doctor needs to know when things happen so she can document. You need to help her by letting her know what's going on. You should keep a journal of symptoms, when they happen and how long it lasts. For example, if your left leg goes numb and your right arm tingles you should log it in your journal. My neuro said he wanted to know if symptoms happened on opposite sides. I can't remember why right now though. :) But it means something to a good neuro. You said you have "bouts of debilitating fatigue, leg pain, leg cramps, numbness, tingling, memory loss...". So if it's coming in "bouts" you may be experiencing short exacerbation. Or do you mean it comes and goes within the day? Document what is happening and call the doctor so she can document it too. Let the doc know when things happen. It may help you get a diagnosis sooner.

My evoked potentials didn't show anything. And my lumbar puncture was positive on only band. My neuro based my diagnosis on my brain MRI, the LP results, and the documentation. I'm sorry I'm having a hard time explaining myself today (it's not a clear thinking day).

If you haven't already already looked through the "files" and "links" on the group homepage then I would encourage you to do so. There's some great info there.

I'm glad you found us!

Sharon

pebbles1175 wrote:

Hello, everyone! My name is and I just signed up to this group. I was "unofficially" diagnosed with MS in December of '05. I presented with an episode of optic neuritis, and was sent by my opthamologist to a neurologist where an MRI was done. Seven brain lesions were found, and I was started on Avonex in January. I am 32 years old with 2 children and a step child. I used to work full time, but since February, I have been off on "short term" disability. I have until July to return to work before this benefit offered through my work place expires. I hope to find support here from others going through the same thing. I get so frustrated because my neurologist won't come right out and say that I have MS, just that I have "presented with one episode and have MRI consistent with MS and I am at high risk for developing MS within 5 years" She has ordered another MRI next month, along with a test called "evoked potentials" and she said possibly after that she will do a lumbar puncture. I have gorged myself on information, and I do believe that I have MS, and am frustrated because noone will give me an "official" diagnosis until I have another "exacerbation" or the MRI and evoked potentials show something. But what exactly IS an "exacerbation" or an "episode"? I have bouts of debilitating fatigue, leg pain, leg cramps, numbness, tingling, memory loss, you name it. But this is everyday. Are these exacerbations or what? Do I call my doctor everytime my leg goes numb? She prescribed my something alled baclofen, which according to the information, is a medication used for MS. I'm on Avonex, which is for MS, so why won't she just tell me I have MS??? I have suffered severe depression and was placed on medication and am seeing a therapist. I have periods where I get so dag gone angry and frustrated. I didn't mean to ramble, just wanted to brief everyone on myself and my situation. I hope this group will be a place where I can find some one who understands, because, as much as my family tries, I get frustrated because they just don't understand. Thank you for listening.~

Sharon (MSersLife creator/owner)

Bloom where you are planted.....

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

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Hi ,

I don't think I introduced myself. My name is Valene. I am 46. I have 4 children and 8 grandchildren. I live in NC with my companion of 7 years. After having to stop work a few years back, he has become not just a friend, but someone who means the world to me.

I know what you are going through and I feel your pain. I am one of those who has managed to "fall through the cracks", so-to-speak. I have applied several times for disability, each time being denied. I am not giving up though. I am going to apply again and this time I will get it. Don't give up....you will too.

It was very nice meeting you. God bless....Val

-- Re: New member

No, my insurance didn't really question me a lot. I had to fill out a lot of paperwork, but the Avonex support people were great helping with that. Our insurance has 3 tiers, though, and naturally, the Avonex was the 3rd tier which means I have to pay 20%, which equals $200 per month. I can also go to the long term disability in August, but like I mentioned before, my salary will drop to 60% and my position is no longer guaranteed should I have to return to work. I have already filed for my social security, and I believe my primary care physician and my urologist will assist me much more than my neurologist. She's dead set that I should return to work. I know what you mean about having a good few days or weeks, then BAM! your down for the count. When I do have the good days, I'm riddled with guilt because I think that I should be working, but I know that as you said, it is so unpredictable when I feel okay and when I do not. I have a hard time even going out in public, because I constantly run into people I know or worked with and they always ask me how I am and say how good I look. I always smile and say "I'm good, how are you doing" because I don't think they REALLY want to know how I am, and I feel like they're scrutinizing me and looking me up and down feeling as if I'm "faking" or whatever. I know a lot of this is paranoia on my part, but I am so self conscious about the whole deal and really would prefer to be able to work. I'm really disappointed and surprised at my neurologist for not taking more of an interest in why I felt like I cant' work. It was like she didn't even want to discuss it, she just said that my employer would be required to make accommodations for me to return to work. But, honestly, what accommodations can they make? Give me a couch in my office so I can lie down when I'm wiped out?? Have someone read me all the fine print I'm required to read and can't see? Massage my legs when they cramp? Type out my reports when my hands don't cooperate like they should? Hand me tissues when I cry? GET REAL!! What you said does make sense, and thankfully, IF I am approved for my disability, I will also be able to stay on the long term disability retirement offered through my job. As I mentioned, I work(ed) at a prison, so it is a state position, and the benefits are good in that aspect. I just hope that I am approved. My family could not make it on my husbands income alone, and my long term will have to kick in in July, and there goes my position should I have to return to work. Thank you so much for listening. As I said, I love this group already.

~

Re: New member

Hi :

You have a lot of questions and I'll try to answer some of them for you. But I'll ask you some, too :) First let me ask you if you like your neurologist? It sounds as if your neuro is very cautious. That's not a bad thing but right now it sounds like you are in need of something more concrete, especially in light of your short term disability running out soon. Do you plan to apply for Social Security Disability (SSDI)? If so, have you asked your doc if she will fill out forms for SSDI?

Yes, call your neuro every time your leg goes numb. Call every time something happens. The doctor needs to know when things happen so she can document. You need to help her by letting her know what's going on. You should keep a journal of symptoms, when they happen and how long it lasts. For example, if your left leg goes numb and your right arm tingles you should log it in your journal. My neuro said he wanted to know if symptoms happened on opposite sides. I can't remember why right now though. :) But it means something to a good neuro. You said you have "bouts of debilitating fatigue, leg pain, leg cramps, numbness, tingling, memory loss...". So if it's coming in "bouts" you may be experiencing short exacerbation. Or do you mean it comes and goes within the day? Document what is happening and call the doctor so she can document it too. Let the doc know when things happen. It may help you get a diagnosis sooner.

My evoked potentials didn't show anything. And my lumbar puncture was positive on only band. My neuro based my diagnosis on my brain MRI, the LP results, and the documentation. I'm sorry I'm having a hard time explaining myself today (it's not a clear thinking day).

If you haven't already already looked through the "files" and "links" on the group homepage then I would encourage you to do so. There's some great info there.

I'm glad you found us!

Sharon

pebbles1175 wrote:

Hello, everyone! My name is and I just signed up to this group. I was "unofficially" diagnosed with MS in December of '05. I presented with an episode of optic neuritis, and was sent by my opthamologist to a neurologist where an MRI was done. Seven brain lesions were found, and I was started on Avonex in January. I am 32 years old with 2 children and a step child. I used to work full time, but since February, I have been off on "short term" disability. I have until July to return to work before this benefit offered through my work place expires. I hope to find support here from others going through the same thing. I get so frustrated because my neurologist won't come right out and say that I have MS, just that I have "presented with one episode and have MRI consistent with MS and I am at high risk for developing MS within 5 years" She has ordered another MRI next month, along with a test called "evoked potentials" and she said possibly after that she will do a lumbar puncture. I have gorged myself on information, and I do believe that I have MS, and am frustrated because noone will give me an "official" diagnosis until I have another "exacerbation" or the MRI and evoked potentials show something. But what exactly IS an "exacerbation" or an "episode"? I have bouts of debilitating fatigue, leg pain, leg cramps, numbness, tingling, memory loss, you name it. But this is everyday. Are these exacerbations or what? Do I call my doctor everytime my leg goes numb? She prescribed my something alled baclofen, which according to the information, is a medication used for MS. I'm on Avonex, which is for MS, so why won't she just tell me I have MS??? I have suffered severe depression and was placed on medication and am seeing a therapist. I have periods where I get so dag gone angry and frustrated. I didn't mean to ramble, just wanted to brief everyone on myself and my situation. I hope this group will be a place where I can find some one who understands, because, as much as my family tries, I get frustrated because they just don't understand. Thank you for listening.~

Sharon (MSersLife creator/owner)

Bloom where you are planted.....

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If you would happen to be able to get on Social Security the money the

kids end up getting is a big help. My wife Judy and I are in the same

boat My income dropped just like your does. My wife is a Social worker

and I am glad she has a good job. We to didn't want my MS to effect our

income much. We have learned to adjust.

I was so new to this MS I told everyone I worked with I would be back

soon. I was treating this MS like it was a cold or something. I am

always very thankful I have this and not some terminal disease.

Bill

Damron wrote:

> No, my insurance didn't really question me a lot. I had to fill out a

> lot of paperwork, but the Avonex support people were great helping

> with that. Our insurance has 3 tiers, though, and naturally, the

> Avonex was the 3rd tier which means I have to pay 20%, which equals

> $200 per month. I can also go to the long term disability in August,

> but like I mentioned before, my salary will drop to 60% and my

> position is no longer guaranteed should I have to return to work. I

> have already filed for my social security, and I believe my primary

> care physician and my urologist will assist me much more than my

> neurologist. She's dead set that I should return to work. I know what

> you mean about having a good few days or weeks, then BAM! your down

> for the count. When I do have the good days, I'm riddled with guilt

> because I think that I should be working, but I know that as you said,

> it is so unpredictable when I feel okay and when I do not. I have a

> hard time even going out in public, because I constantly run into

> people I know or worked with and they always ask me how I am and say

> how good I look. I always smile and say " I'm good, how are you doing "

> because I don't think they REALLY want to know how I am, and I feel

> like they're scrutinizing me and looking me up and down feeling as if

> I'm " faking " or whatever. I know a lot of this is paranoia on my part,

> but I am so self conscious about the whole deal and really would

> prefer to be able to work. I'm really disappointed and surprised at my

> neurologist for not taking more of an interest in why I felt like I

> cant' work. It was like she didn't even want to discuss it, she just

> said that my employer would be required to make accommodations for me

> to return to work. But, honestly, what accommodations can they make?

> Give me a couch in my office so I can lie down when I'm wiped out??

> Have someone read me all the fine print I'm required to read and can't

> see? Massage my legs when they cramp? Type out my reports when my

> hands don't cooperate like they should? Hand me tissues when I cry?

> GET REAL!! What you said does make sense, and thankfully, IF I am

> approved for my disability, I will also be able to stay on the long

> term disability retirement offered through my job. As I mentioned, I

> work(ed) at a prison, so it is a state position, and the benefits are

> good in that aspect. I just hope that I am approved. My family could

> not make it on my husbands income alone, and my long term will have to

> kick in in July, and there goes my position should I have to return to

> work. Thank you so much for listening. As I said, I love this group

> already.

> ~

>

> * Re: New member

>>

>> Hi :

>>

>> You have a lot of questions and I'll try to answer some of

>> them for you. But I'll ask you some, too :) First let me

>> ask you if you like your neurologist? It sounds as if your

>> neuro is very cautious. That's not a bad thing but right

>> now it sounds like you are in need of something more

>> concrete, especially in light of your short term disability

>> running out soon. Do you plan to apply for Social Security

>> Disability (SSDI)? If so, have you asked your doc if she

>> will fill out forms for SSDI?

>>

>> Yes, call your neuro every time your leg goes numb. Call

>> every time something happens. The doctor needs to know when

>> things happen so she can document. You need to help her by

>> letting her know what's going on. You should keep a journal

>> of symptoms, when they happen and how long it lasts. For

>> example, if your left leg goes numb and your right arm

>> tingles you should log it in your journal. My neuro said he

>> wanted to know if symptoms happened on opposite sides. I

>> can't remember why right now though. :) But it means

>> something to a good neuro. You said you have " bouts of

>> debilitating fatigue, leg pain, leg cramps, numbness,

>> tingling, memory loss... " . So if it's coming in " bouts " you

>> may be experiencing short exacerbation. Or do you mean it

>> comes and goes within the day? Document what is happening

>> and call the doctor so she can document it too. Let the doc

>> know when things happen. It may help you get a diagnosis

>> sooner.

>>

>> My evoked potentials didn't show anything. And my lumbar

>> puncture was positive on only band. My neuro based my

>> diagnosis on my brain MRI, the LP results, and the

>> documentation. I'm sorry I'm having a hard time explaining

>> myself today (it's not a clear thinking day).

>>

>> If you haven't already already looked through the " files " and

>> " links " on the group homepage then I would encourage you to

>> do so. There's some great info there.

>>

>> I'm glad you found us!

>>

>> Sharon

>>

>>

>> */pebbles1175 /* wrote:

>>

>> Hello, everyone! My name is and I just signed up to

>> this group.

>> I was " unofficially " diagnosed with MS in December of '05. I

>> presented with an episode of optic neuritis, and was sent

>> by my

>> opthamologist to a neurologist where an MRI was done.

>> Seven brain

>> lesions were found, and I was started on Avonex in

>> January. I am 32

>> years old with 2 children and a step child. I used to

>> work full

>> time, but since February, I have been off on " short term "

>> disability. I have until July to return to work before

>> this benefit

>> offered through my work place expires. I hope to find

>> support here

>> from others going through the same thing. I get so

>> frustrated

>> because my neurologist won't come right out and say that

>> I have MS,

>> just that I have " presented with one episode and have MRI

>> consistent

>> with MS and I am at high risk for developing MS within 5

>> years " She

>> has ordered another MRI next month, along with a test

>> called " evoked

>> potentials " and she said possibly after that she will do

>> a lumbar

>> puncture. I have gorged myself on information, and I do

>> believe that

>> I have MS, and am frustrated because noone will give me

>> an " official " diagnosis until I have another

>> " exacerbation " or the

>> MRI and evoked potentials show something. But what

>> exactly IS

>> an " exacerbation " or an " episode " ? I have bouts of

>> debilitating

>> fatigue, leg pain, leg cramps, numbness, tingling, memory

>> loss, you

>> name it. But this is everyday. Are these exacerbations or

>> what? Do I

>> call my doctor everytime my leg goes numb? She prescribed my

>> something alled baclofen, which according to the

>> information, is a

>> medication used for MS. I'm on Avonex, which is for MS,

>> so why won't

>> she just tell me I have MS??? I have suffered severe

>> depression and

>> was placed on medication and am seeing a therapist. I

>> have periods

>> where I get so dag gone angry and frustrated. I didn't

>> mean to

>> ramble, just wanted to brief everyone on myself and my

>> situation. I

>> hope this group will be a place where I can find some one

>> who

>> understands, because, as much as my family tries, I get

>> frustrated

>> because they just don't understand. Thank you for listening.

>> ~

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

>> *_Sharon_ (MSersLife creator/owner) *

>> *Bloom where you are planted..... *

>>

------------------------------------------------------------------------

>> Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone

>> calls. Great rates starting at 1¢/min.

>>

<http://us.rd.yahoo.com/mail_us/taglines/postman7/*http://us.rd.yahoo.com/evt=39\

666/*http://messenger.yahoo.com>

>>

>

>

>

<http://us.rd.yahoo.com/mail_us/taglines/postman7/*http://us.rd.yahoo.com/evt=39\

666/*http://messenger.yahoo.com>

>

>

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Is there a local MS support group near you that you could attend? That's the best way to get get opinions on neurologists in your general area. Have you also registered with the National MS Society and their state office as well? You can get a lot of great info through them. My local NMSS office has an extensive lending library and yours probably does, too. It's free. I'm too far from mine to go in person to pick up books, etc. so they mail them to me with a postage paid return envelope. I just borrowed 2 exercise videos and the Lander book to read. When did you apply for SSDI? Don't you need a doctor to agree that you need disability before you can get SSDI? If you feel like you could work you may be able to get free job re-training

through your state's vocational rehabilitation service. I'm glad you are feeling at home here! Sharon Damron wrote: I already love this group! Thank you for responding. As to your first question, no I don't really like my neurologist. I was referred to her by my opthamologist. (sp?) I have applied for my SSDI, but obviously that takes time. I can extend my short term, but my salary will drop

to 60%. I asked her about doing this, and she said I needed to return to work, that it was the best thing I could do. Now, let me explain something here. I work at a level 6 SUPER maximum security prison, dealing one on one with inmates who have shown to be problematic at lower level maximum security prisons. It is a very stressful job to say the least. And as you said, I was having some not so clear thinking days myself, and my vision was severely impaired after my episode with optic neuritis. The vision has not returned completely yet. I had deadlines that I was missing at work, was not able to think clearly, see clearly, remember things clearly, was consistently fatigued, and I felt it was dangerous for me to work. I tried to explain this to her, but she just kind of brushed it off, and said I needed to go back to work, and talk to my supervisors about "modifications" that could be made to accommodate me. I personally do not think that any accommodations could be made

to enhance my safety and the safety of those around me, given my line of work. I'm embarrassed by this, because I honestly did love my job prior to becoming "ill" for lack of a better term. I noticed gradual changes at first, but chalked them up to stress, getting older, being scatter brained, etc. Then when the ON set in, I went to my local ophthalmologist, who explained to me the relation between ON and MS. I live in an extremely rural area, and our health care locally, well just sucks, basically. So he referred my to another ophthalmologist/neurologist (6 hours away at UVA) Who AGAIN explained the probability that MS was the likely cause. He did several tests of my eyes, and ordered an MRI and referred me to a neurologist that was also at UVA (6 hours away from home). So I went to see her, she looked at the MRI, did a neurological exam, started me on Avonex and told me to come back in 3 months that she wanted to do another MRI of the spinal cord area. So a few

weeks before my appt. I called to see if I could come early and have the MRI so I could see her after that and save me another trip. Her office staff said no. So, I went up there again about 2 weeks ago, she did another neurological exam, and scheduled the MRI and evoked potential tests for next month. which means ANOTHER trip to UVA. She asked me if I was having any other "neurological symptoms"....now I'm not a neurologist, and I was dumbfounded. I thought she should have asked me more specifically, but anyway I don't do good in Doctors appointments, I get nervous and emotional, and feel like very ignorant. I did manage to get across to her about the leg pain, and she prescribed baclofen. I am considering switching neurologists, and have looked into going to Wake Forest in NC. But I hate to switch up in the middle of everything, but I also realize how important it is to have a good relationship with your doctor. And she really does not impress me. I have looked at a few

of the links on the home page, and I like your idea of the journal. I will start that immediately. Thank you so much for responding. ~ Re: New member Hi : You

have a lot of questions and I'll try to answer some of them for you. But I'll ask you some, too :) First let me ask you if you like your neurologist? It sounds as if your neuro is very cautious. That's not a bad thing but right now it sounds like you are in need of something more concrete, especially in light of your short term disability running out soon. Do you plan to apply for Social Security Disability (SSDI)? If so, have you asked your doc if she will fill out forms for SSDI? Yes, call your neuro every time your leg goes numb. Call every time something happens. The doctor needs to know when things happen so she can document. You need to help her by letting her know what's going on. You should keep a journal of symptoms, when they happen and how

long it lasts. For example, if your left leg goes numb and your right arm tingles you should log it in your journal. My neuro said he wanted to know if symptoms happened on opposite sides. I can't remember why right now though. :) But it means something to a good neuro. You said you have "bouts of debilitating fatigue, leg pain, leg cramps, numbness, tingling, memory loss...". So if it's coming in "bouts" you may be experiencing short exacerbation. Or do you mean it comes and goes within the day? Document what is happening and call the doctor so she can document it too. Let the doc know when things happen. It may help you get a diagnosis sooner. My evoked potentials didn't show anything. And my lumbar puncture was positive on only band. My neuro based my

diagnosis on my brain MRI, the LP results, and the documentation. I'm sorry I'm having a hard time explaining myself today (it's not a clear thinking day). If you haven't already already looked through the "files" and "links" on the group homepage then I would encourage you to do so. There's some great info there. I'm glad you found us! Sharon pebbles1175 wrote: Hello, everyone! My name is and I just signed up to this group.

I was "unofficially" diagnosed with MS in December of '05. I presented with an episode of optic neuritis, and was sent by my opthamologist to a neurologist where an MRI was done. Seven brain lesions were found, and I was started on Avonex in January. I am 32 years old with 2 children and a step child. I used to work full time, but since February, I have been off on "short term" disability. I have until July to return to work before this benefit offered through my work place expires. I hope to find support here from others going through the same thing. I get so frustrated because my neurologist won't come right out and say that I have MS, just that I have "presented with one episode and have MRI consistent with MS and I am at high risk for developing MS within 5 years" She has ordered another MRI next month, along with a test called "evoked potentials" and she said possibly after that she will do a lumbar puncture.

I have gorged myself on information, and I do believe that I have MS, and am frustrated because noone will give me an "official" diagnosis until I have another "exacerbation" or the MRI and evoked potentials show something. But what exactly IS an "exacerbation" or an "episode"? I have bouts of debilitating fatigue, leg pain, leg cramps, numbness, tingling, memory loss, you name it. But this is everyday. Are these exacerbations or what? Do I call my doctor everytime my leg goes numb? She prescribed my something alled baclofen, which according to the information, is a medication used for MS. I'm on Avonex, which is for MS, so why won't she just tell me I have MS??? I have suffered severe depression and was placed on medication and am seeing a therapist. I have periods where I get so dag gone angry and frustrated. I didn't mean to ramble, just wanted to brief everyone on myself and my situation. I hope this group will be

a place where I can find some one who understands, because, as much as my family tries, I get frustrated because they just don't understand. Thank you for listening.~ Sharon (MSersLife creator/owner) Bloom where you are planted..... Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Sharon (MSersLife creator/owner) Bloom where you are planted.....

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

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I was also approved for SSDI the first time I applied. I had a phone interview and was told then how much I would be getting and on what date each month. I was surprised and ask if I was approved then? The interviewer said I would get a formal approval letter but there shouldn't be any problems. And she was right. I followed that video tape the group here has to loan out by the former SSDI judge. I also get long term disability from my employer as well as SSDI. Thank goodness for that job! Having that money has certainly made all of this so much easier. SharonMS-Bill

wrote: Hi I was wondering did your insurance question you a lot when your doc had you go on Avonex? Avonex is expensive and it surprises me with you not having a diagnosis. When my MS hit me in Aug of 99 I had no idea what MS was either and I did like you are now trying to learn as much as I could. Since getting my MS I NO longer have any balance so I use a walker all the time. I also have bladder trouble with my MS. I was employed by Lockheed- and I used their short term and long term disability. I am still on their long term. I am also on Social Security. I was told by the people paying for my long term that I needed to apply for Social Security. I was accepted my first time which really surprised me.

When you have kids like you do if you are accepted not only you get Social Security pay but also your kids will also. They know you have to your kids to support so you get that to help out. They get Social Security pay until they are 18. I had gone to a local MS group for a while and one thing I learned was that as soon as you become ill you need to go ahead and apply for Social Security. In fact I think you should do it now. because when you apply for Social Security their is a waiting period before you will be looked at by them. The good thing about applying as soon as you become ill is that if they can determine you could were ill enough when you applied to receive funs at that time and you are accepted you will probably get back pay to that point when you applied. Your kids will also get back pay. This MS is very unpredictable because you may feel good for a while and then have your MS troubles hit you out of the blue one day. I often have day's when I feel why

am I still just sitting around home? and then I get those bad spells and then I am very happy at that point to have it. I am sure with my MS I would probably have to go from job to job not knowing if my health would hold out long enough to make it worth my while. I have always enjoyed working so the Social Security and also getting disability funds from Lockheed has been a big help to my family. I hope all this makes sinceBill Damron wrote: I already love this group! Thank you for responding. As to your first question, no I don't really like my neurologist. I was referred to her by my opthamologist. (sp?) I have applied for my SSDI, but obviously that takes time. I can extend my short term, but my salary

will drop to 60%. I asked her about doing this, and she said I needed to return to work, that it was the best thing I could do. Now, let me explain something here. I work at a level 6 SUPER maximum security prison, dealing one on one with inmates who have shown to be problematic at lower level maximum security prisons. It is a very stressful job to say the least. And as you said, I was having some not so clear thinking days myself, and my vision was severely impaired after my episode with optic neuritis. The vision has not returned completely yet. I had deadlines that I was missing at work, was not able to think clearly, see clearly, remember things clearly, was consistently fatigued, and I felt it was dangerous for me to work. I tried to explain this to her, but she just kind of brushed it off, and said I needed to go back to work, and talk to my supervisors about "modifications" that could be made to accommodate me. I personally do not think that any accommodations could

be made to enhance my safety and the safety of those around me, given my line of work. I'm embarrassed by this, because I honestly did love my job prior to becoming "ill" for lack of a better term. I noticed gradual changes at first, but chalked them up to stress, getting older, being scatter brained, etc. Then when the ON set in, I went to my local ophthalmologist, who explained to me the relation between ON and MS. I live in an extremely rural area, and our health care locally, well just sucks, basically. So he referred my to another ophthalmologist/neurologist (6 hours away at UVA) Who AGAIN explained the probability that MS was the likely cause. He did several tests of my eyes, and ordered an MRI and referred me to a neurologist that was also at UVA (6 hours away from home). So I went to see her, she looked at the MRI, did a neurological exam, started me on Avonex and told me to come back in 3 months that she wanted to do another MRI of the spinal cord area. So a

few weeks before my appt. I called to see if I could come early and have the MRI so I could see her after that and save me another trip. Her office staff said no. So, I went up there again about 2 weeks ago, she did another neurological exam, and scheduled the MRI and evoked potential tests for next month. which means ANOTHER trip to UVA. She asked me if I was having any other "neurological symptoms"....now I'm not a neurologist, and I was dumbfounded. I thought she should have asked me more specifically, but anyway I don't do good in Doctors appointments, I get nervous and emotional, and feel like very ignorant. I did manage to get across to her about the leg pain, and she prescribed baclofen. I am considering switching neurologists, and have looked into going to Wake Forest in NC. But I hate to switch up in the middle of everything, but I also realize how important it is to have a good relationship with your doctor. And she really does not impress me. I have looked at a

few of the links on the home page, and I like your idea of the journal. I will start that immediately. Thank you so much for responding. ~ Re: New member Hi : You have a lot of questions and I'll try to answer some of them for you. But I'll ask you some, too :) First let me ask you if you like your neurologist? It sounds as if your neuro is very cautious. That's not a bad thing but right now it sounds like you are in need of something more concrete, especially in light of your short term disability running out soon. Do you plan to apply for Social Security Disability (SSDI)? If so, have you asked your doc if she will fill out forms for SSDI? Yes, call your neuro every time your leg goes numb. Call every time something happens. The doctor needs to know when

things happen so she can document. You need to help her by letting her know what's going on. You should keep a journal of symptoms, when they happen and how long it lasts. For example, if your left leg goes numb and your right arm tingles you should log it in your journal. My neuro said he wanted to know if symptoms happened on opposite sides. I can't remember why right now though. :) But it means something to a good neuro. You said you have "bouts of debilitating fatigue, leg pain, leg cramps, numbness, tingling, memory loss...". So if it's coming in "bouts" you may be experiencing short exacerbation. Or do you mean it comes and goes within the day? Document what is happening and call the doctor so she can document it too. Let the doc know when things happen. It may help you get a diagnosis sooner. My evoked potentials didn't show anything. And my lumbar puncture was positive on only band. My neuro based my diagnosis on my brain MRI, the LP results, and the documentation. I'm sorry I'm having a hard time explaining myself today (it's not a clear thinking day). If you haven't already already looked through the "files" and "links" on the group homepage then I would encourage you to do so. There's some great info there. I'm glad you found us! Sharon pebbles1175 wrote: Hello, everyone! My name is and I just signed up to this group. I was "unofficially" diagnosed with MS in December of '05. I presented with an episode of optic neuritis, and was sent by my opthamologist to a neurologist where an MRI was done. Seven brain lesions were found, and I was started on Avonex in January. I am 32 years old with 2 children and a step child. I used to work full time, but since February, I have been off on "short term" disability. I have until July to return to work before this benefit offered through my work place expires. I hope to find support here from others going through the same thing. I get so frustrated because my neurologist won't come right out and say that I have MS, just that I have "presented with one episode and have MRI consistent with MS and I am at high risk for developing MS within 5 years" She has ordered another MRI next month, along with a test

called "evoked potentials" and she said possibly after that she will do a lumbar puncture. I have gorged myself on information, and I do believe that I have MS, and am frustrated because noone will give me an "official" diagnosis until I have another "exacerbation" or the MRI and evoked potentials show something. But what exactly IS an "exacerbation" or an "episode"? I have bouts of debilitating fatigue, leg pain, leg cramps, numbness, tingling, memory loss, you name it. But this is everyday. Are these exacerbations or what? Do I call my doctor everytime my leg goes numb? She prescribed my something alled baclofen, which according to the information, is a medication used for MS. I'm on Avonex, which is for MS, so why won't she just tell me I have MS??? I have suffered severe depression and was placed on medication and am seeing a therapist. I have periods where I get so dag gone angry and frustrated. I didn't mean to

ramble, just wanted to brief everyone on myself and my situation. I hope this group will be a place where I can find some one who understands, because, as much as my family tries, I get frustrated because they just don't understand. Thank you for listening.~ Sharon (MSersLife creator/owner) Bloom where you are planted..... Talk is cheap. Use Yahoo! Messenger to

make PC-to-Phone calls. Great rates starting at 1¢/min. Sharon (MSersLife creator/owner) Bloom

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,

Do not hurry to do anything . Educate yourself before you do the drugs.

There are a lot of things that you can do to help yourself. Unfortunately, MS is a mystery and the doctors and the experts do not have many answers.

A lot of folks are doing very well with alternative's to conventional medicine. Go to www.copingandprevailing.com If you cannot afford to pay for the book send me your mailing address and I will send it to you.

Regards,

Tom

Re: New member

Hi :

You have a lot of questions and I'll try to answer some of them for you. But I'll ask you some, too :) First let me ask you if you like your neurologist? It sounds as if your neuro is very cautious. That's not a bad thing but right now it sounds like you are in need of something more concrete, especially in light of your short term disability running out soon. Do you plan to apply for Social Security Disability (SSDI)? If so, have you asked your doc if she will fill out forms for SSDI?

Yes, call your neuro every time your leg goes numb. Call every time something happens. The doctor needs to know when things happen so she can document. You need to help her by letting her know what's going on. You should keep a journal of symptoms, when they happen and how long it lasts. For example, if your left leg goes numb and your right arm tingles you should log it in your journal. My neuro said he wanted to know if symptoms happened on opposite sides. I can't remember why right now though. :) But it means something to a good neuro. You said you have "bouts of debilitating fatigue, leg pain, leg cramps, numbness, tingling, memory loss...". So if it's coming in "bouts" you may be experiencing short exacerbation. Or do you mean it comes and goes within the day? Document what is happening and call the doctor so she can document it too. Let the doc know when things happen. It may help you get a diagnosis sooner.

My evoked potentials didn't show anything. And my lumbar puncture was positive on only band. My neuro based my diagnosis on my brain MRI, the LP results, and the documentation. I'm sorry I'm having a hard time explaining myself today (it's not a clear thinking day).

If you haven't already already looked through the "files" and "links" on the group homepage then I would encourage you to do so. There's some great info there.

I'm glad you found us!

Sharon

pebbles1175 wrote:

Hello, everyone! My name is and I just signed up to this group. I was "unofficially" diagnosed with MS in December of '05. I presented with an episode of optic neuritis, and was sent by my opthamologist to a neurologist where an MRI was done. Seven brain lesions were found, and I was started on Avonex in January. I am 32 years old with 2 children and a step child. I used to work full time, but since February, I have been off on "short term" disability. I have until July to return to work before this benefit offered through my work place expires. I hope to find support here from others going through the same thing. I get so frustrated because my neurologist won't come right out and say that I have MS, just that I have "presented with one episode and have MRI consistent with MS and I am at high risk for developing MS within 5 years" She has ordered another MRI next month, along with a test called "evoked potentials" and she said possibly after that she will do a lumbar puncture. I have gorged myself on information, and I do believe that I have MS, and am frustrated because noone will give me an "official" diagnosis until I have another "exacerbation" or the MRI and evoked potentials show something. But what exactly IS an "exacerbation" or an "episode"? I have bouts of debilitating fatigue, leg pain, leg cramps, numbness, tingling, memory loss, you name it. But this is everyday. Are these exacerbations or what? Do I call my doctor everytime my leg goes numb? She prescribed my something alled baclofen, which according to the information, is a medication used for MS. I'm on Avonex, which is for MS, so why won't she just tell me I have MS??? I have suffered severe depression and was placed on medication and am seeing a therapist. I have periods where I get so dag gone angry and frustrated. I didn't mean to ramble, just wanted to brief everyone on myself and my situation. I hope this group will be a place where I can find some one who understands, because, as much as my family tries, I get frustrated because they just don't understand. Thank you for listening.~

Sharon (MSersLife creator/owner)

Bloom where you are planted.....

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

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No white-trash jokes here . I live in a double-wide, too. hugs)))) Sharon Damron wrote: I don't mean to sound like a dummy, but my husband and I never do the "itemized" thing on our taxes. What exactly is it you can claim on your taxes. Because I know with all the tests that I've had done and have scheduled in the coming weeks (2 MRI's;

Cystometrogram (sp?) cystoscopy, 2 CT scans, evoked potentials, probably more) and my Avonex ($200 per month) plus I'm on 5 other daily meds, the expenses are becoming mountainous! It certainly would be nice if we could get some sort of tax break on all this. It's funny, too, because my daughter is scheduled to have oral surgery and will probably have to have braces still after that for a deformity of her jaw and some of her teeth. She's 15, and thankfully their all back teeth, so it isn't noticeable, but it causes her a lot of pain. We're in the process of buying a new home, and we have closing costs coming in the next few weeks and have spent $3,000 the last two months on land preparation for the new home (it's a double-wide, no white trash jokes please! :D) So needless to say we haven't had the money to get her teeth fixed. I feel horrible for that, but we plan on it as soon as the mess with the home is over with, it sure would be nice to get some back pay for her

to help with that! ~ Re: New member Hi : You have a lot of questions and I'll try to answer some of them for you. But I'll ask you some, too :) First let me ask you if you like your

neurologist? It sounds as if your neuro is very cautious. That's not a bad thing but right now it sounds like you are in need of something more concrete, especially in light of your short term disability running out soon. Do you plan to apply for Social Security Disability (SSDI)? If so, have you asked your doc if she will fill out forms for SSDI? Yes, call your neuro every time your leg goes numb. Call every time something happens. The doctor needs to know when things happen so she can document. You need to help her by letting her know what's going on. You should keep a journal of symptoms, when they happen and how long it lasts. For example, if your left leg goes numb and your right arm tingles you should log it in your journal. My neuro said he wanted to know if symptoms happened

on opposite sides. I can't remember why right now though. :) But it means something to a good neuro. You said you have "bouts of debilitating fatigue, leg pain, leg cramps, numbness, tingling, memory loss...". So if it's coming in "bouts" you may be experiencing short exacerbation. Or do you mean it comes and goes within the day? Document what is happening and call the doctor so she can document it too. Let the doc know when things happen. It may help you get a diagnosis sooner. My evoked potentials didn't show anything. And my lumbar puncture was positive on only band. My neuro based my diagnosis on my brain MRI, the LP results, and the documentation. I'm sorry I'm having a hard time explaining myself today (it's not a clear thinking day). If you haven't already already looked through the "files" and "links" on the group homepage then I would encourage you to do so. There's some great info there. I'm glad you found us! Sharon pebbles1175 wrote: Hello, everyone! My name is and I just signed up to this group. I was "unofficially" diagnosed with MS in December of '05. I presented with an episode of optic neuritis, and was sent by my opthamologist to a neurologist where an MRI was done. Seven brain lesions were found, and I was started on Avonex in January.

I am 32 years old with 2 children and a step child. I used to work full time, but since February, I have been off on "short term" disability. I have until July to return to work before this benefit offered through my work place expires. I hope to find support here from others going through the same thing. I get so frustrated because my neurologist won't come right out and say that I have MS, just that I have "presented with one episode and have MRI consistent with MS and I am at high risk for developing MS within 5 years" She has ordered another MRI next month, along with a test called "evoked potentials" and she said possibly after that she will do a lumbar puncture. I have gorged myself on information, and I do believe that I have MS, and am frustrated because noone will give me an "official" diagnosis until I have another "exacerbation" or the MRI and evoked potentials show something. But what exactly IS an

"exacerbation" or an "episode"? I have bouts of debilitating fatigue, leg pain, leg cramps, numbness, tingling, memory loss, you name it. But this is everyday. Are these exacerbations or what? Do I call my doctor everytime my leg goes numb? She prescribed my something alled baclofen, which according to the information, is a medication used for MS. I'm on Avonex, which is for MS, so why won't she just tell me I have MS??? I have suffered severe depression and was placed on medication and am seeing a therapist. I have periods where I get so dag gone angry and frustrated. I didn't mean to ramble, just wanted to brief everyone on myself and my situation. I hope this group will be a place where I can find some one who understands, because, as much as my family tries, I get frustrated because they just don't understand. Thank you for listening.~ Sharon (MSersLife creator/owner) Bloom where you are planted..... Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Sharon (MSersLife creator/owner) Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. Sharon (MSersLife creator/owner) Bloom

where you are planted.....

Be a chatter box. Enjoy free PC-to-PC calls with Yahoo! Messenger with Voice.

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It's a common fear--your fear of seeing people who are worse off than you at the meetings. You may see people who are worse off than you and then you may see people who are doing great. Years ago I started a local support group in my community and met some wonderful people and heard some very inspiring stories. Sharon Damron wrote: yeah, actually, there

is one very close by. I haven't started attending meetings yet, I have become quite the recluse, and I know that isn't healthy for me, and I need to start going. My husband is really encouraging me to attend the meetings, and I have been invited, but I'm nervous that I will break down and start crying or something and I'm nervous about seeing people that have progressed and become severely disabled, kind of like it would be looking into a crystal ball or something. Is that horrible of me or what?? I feel so guilty for saying that out loud. I hope I didn't offend anyone. I haven't registered with the NMSS, I didn't know about registering with them. I applied about a month ago for my SSDI, my primary care physician said he will assist me, and I think my urologist will also, as he is a family friend. I'm just concerned about my neuro. I know from what I've read it seems the MS society is all about keeping people in the work force and forcing employers to "accommodate" MSers,

and that's all fine and good, if the accommodations allow for the MSers to be able to work, but with the symptoms that are preventing me from working, I don't see that any accommodations could be made. I haven't taken the decision to file for SSDI lightly, I have always enjoyed working and was proud of myself and the job I did. I always felt like I had to "prove" myself to people. I was a "teen mother" I had my daughter when I was sixteen. I was hell bent and determined not to become a "statistic" and rely on the "system" to support me and my daughter. So I worked 3 jobs and went to college full time, graduated with honors, got a good job and beat the odds. Now I feel like I'm having to give all that up and that it was all for nothing. I know I set a good example for my daughter, and what with so many people abusing the system and abusing SSDI, I don't want her to look at me that way. I know in my heart that I have given this a lot of thought, and do not feel that

returning to work is an option at this point. I do not think that I am physically or mentally capable of doing it at this point. I have an appointment with a therapist this coming week to help me deal with all of this, because being the proud person that I am (was) I am having a difficult time accepting my limitations now. Wow, I didn't mean to ramble, and that was the first time I have expressed all of that in words, that felt really good! :D Again, I love this group! ~ Re: New member Hi : You have a lot of questions and I'll try to answer some of them for you. But I'll ask you some, too :) First let me ask you if you like your neurologist? It sounds as if your neuro is very cautious. That's not a bad thing but right now it sounds like you are in need of something more concrete, especially in light of your short term disability running out soon. Do you plan to apply for Social Security Disability (SSDI)? If so, have you asked your doc if she will fill out forms for SSDI? Yes, call your

neuro every time your leg goes numb. Call every time something happens. The doctor needs to know when things happen so she can document. You need to help her by letting her know what's going on. You should keep a journal of symptoms, when they happen and how long it lasts. For example, if your left leg goes numb and your right arm tingles you should log it in your journal. My neuro said he wanted to know if symptoms happened on opposite sides. I can't remember why right now though. :) But it means something to a good neuro. You said you have "bouts of debilitating fatigue, leg pain, leg cramps, numbness, tingling, memory loss...". So if it's coming in "bouts" you may be experiencing short exacerbation. Or do you mean it comes and goes within the day? Document what is happening and call the doctor so she can document it too. Let the doc know when things

happen. It may help you get a diagnosis sooner. My evoked potentials didn't show anything. And my lumbar puncture was positive on only band. My neuro based my diagnosis on my brain MRI, the LP results, and the documentation. I'm sorry I'm having a hard time explaining myself today (it's not a clear thinking day). If you haven't already already looked through the "files" and "links" on the group homepage then I would encourage you to do so. There's some great info there. I'm glad you found us! Sharon pebbles1175 wrote: Hello, everyone! My name is and I just signed up to this group. I was "unofficially" diagnosed with MS in December of '05. I presented with an episode of optic neuritis, and was sent by my opthamologist to a neurologist where an MRI was done. Seven brain lesions were found, and I was started on Avonex in January. I am 32 years old with 2 children and a step child. I used to work full time, but since February, I have been off on "short term" disability. I have until July to return to work before this benefit offered through my work place expires. I hope to find support here from others going through the same thing. I get so frustrated because my neurologist won't come right out and say that I have MS,

just that I have "presented with one episode and have MRI consistent with MS and I am at high risk for developing MS within 5 years" She has ordered another MRI next month, along with a test called "evoked potentials" and she said possibly after that she will do a lumbar puncture. I have gorged myself on information, and I do believe that I have MS, and am frustrated because noone will give me an "official" diagnosis until I have another "exacerbation" or the MRI and evoked potentials show something. But what exactly IS an "exacerbation" or an "episode"? I have bouts of debilitating fatigue, leg pain, leg cramps, numbness, tingling, memory loss, you name it. But this is everyday. Are these exacerbations or what? Do I call my doctor everytime my leg goes numb? She prescribed my something alled baclofen, which according to the information, is a medication used for MS. I'm on Avonex, which is for MS, so why won't she

just tell me I have MS??? I have suffered severe depression and was placed on medication and am seeing a therapist. I have periods where I get so dag gone angry and frustrated. I didn't mean to ramble, just wanted to brief everyone on myself and my situation. I hope this group will be a place where I can find some one who understands, because, as much as my family tries, I get frustrated because they just don't understand. Thank you for listening.~ Sharon (MSersLife creator/owner) Bloom where you are planted..... Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Sharon (MSersLife creator/owner) Bloom where you are planted..... Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Sharon (MSersLife creator/owner) Bloom

where you are planted.....

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

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Dear Miriam

I'm new to the group, and have today made my first entries.

I am on narcotics for my upper back pain due to a laminectomy (T2-T4) back in

12/05. I may need another one soon.

I would like to know more about the " spinal cord stimulator. " Is it like a TENS

unit? I had one of those years ago when suffering back pain for another reason.

Hope to hear back.

Thanks...Diane

Miriam wrote: Hi,

I'm new to the group but not to chronic pain. I began in 2000 to

have sciatic pain down my left leg.

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Hi, Ron.

My name is Diane (middle name Arleen) and I, too, am in chronic pain. I'm 56

and live in Seattle. My youngest daughter moved out last December, so I'm alone

now. I am not able to work. And I have painfully learned that my friends who

do not suffer from chronic pain cannot understand, even though they want to. I

thank God for groups like this. I am new to the group.

Ron - New York wrote:

I'm real happy that there's a group like this for

me to be a part of. I don't get out a lot, and I find

these forums very helpful.

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Ricci Welcome ,

What are your symptoms exactly . if it is mostly neurological only th ecoil will do as it has th epower to cross the bone to the brain and medular chord ,

Kindly Marie

To: Lyme_and_Rife Sent: Tuesday, August 7, 2012 9:52 AMSubject: New member

Hello, I'm new to the group and have had chronic Lyme for about 10 years. I was diagnosed in December 2011 and have been on IV abx since January 2012.I really want to get a rife machine but am having great difficulty deciding which one since I don't really understand the differences of all the various types even though Ive read up on them. It's just too complicated! I need something that will be easy to use and understand! That treats lyme and bartonella and other possible co-infections.Any help is much appreciated!Ricci

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Oh Sharee,

Sorry to hear about your ordeal.

as myself, I never had any life, I had been sick and undiagnosed for 45 years, since age 9, so I had not known any difference. I finally diagnosed myself per the symptoms and test confirmed it.

We in USA do not have better chances than you over there. There is a controversy if Chronic Lyme even exist.

I will send you a symptom chart so you can check it against your symptoms. Also ask you doctor for the copy of all of your tests, you will be surprised that after a while you will read them as a pro.

I already know what is wrong with me now when I see it. You doctor must have tested you for Babesia. My husband has Babesia and his blood is very thick due to that, since the Babesia lives in Red Blood cells and when they die off the blood gets very thick and you may be prone to blood cloths. Also check your Thyroid (Free T3, Reverse T3, and Free T4) and other hormones, Lyme gets to your organs first and kills the function of all.

You are your best advocate, do not rely on Dr. 100%. Make sure you take enough good probiotics so you do not get Gut problems, and also see if you can get some of the Herbal remedies for Candida and Immune Support. I am taking Transfer Factor Immune Plus and Transfer Factor Immune Lyme Plus, Action Max, Candinex, Thyrodine.

I hope all works well with you. Feel free to email me privately any time and ask questions or if you need support. I am on Disability and pretty lonely myself, so this forum is real blessing.

Nevenka

Comparison Lyme Disease and Co-infections Symptom Chart (2)

From: Sharee

Sent: Friday, August 10, 2012 10:51 PM

To: Lyme_and_Rife

Subject: new member

Hi all,

I have just recently been diagnosed with Lyme disease, after 20 years of symptoms and been misdiagnosed with motor neuron disease (like ALS) for 10 years. Sadly and luckily there is only one doctor in Western Australia where I live that will treat people with chronic Lyme. He has just given me abx for babesia which scares me because I don't know how he diagnosed me with it, he doesn't explain thing very well and it probably didn't help that I had a emotional breakdown in his office. I have never had abx for lyme or babesia before and after doing research and reading lots of post here I'm really worried about starting them and potentially making everything thing worse.

The problem is that after reading the posts of this group I am not sure how to get hold of some of the things you guys talk about. Like essiac tea does anyone know where I can get it from, I don't think mountain rose herbs sends to Australia.

Also trying to get a rife machine, I've sent some email inquiries about doug coils but haven't had responses as yet. I'm not sure if I can get one sent her. Does anyone know who is the best person to contact about one.

it is really hard getting advice or help in australia because lyme is not well known about and 95% of health practitioners and doctors either don't know about or deny it exists here. But I definitely got bitten in western australia however I don't remember, what I do remember is that my life completely changed at 15 and I just thought it was puberty.

So any help or advice for me as I start the treatment for Lyme would be appreciated

Thx so much

Sharee

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