New Member

[Guest guest]

When I got my first check and also the kids they all were

nice checks because of the back pay. We made good use of the money. My

oldest around that time started on his braces and I was able to pay for

all of his dental fee's from that money.

I keep good records on how the kids money is spent.

I also keep good info on our yearly medical expensive's and with what

both my wife and myself spend each year we have always got more money

back on our taxes because of it. My first year with my MS was when we

spent the most. I am glad we could claim that on our taxes.

Bill

Jooly's

Sharon Marsden wrote:

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.

Sharon

MS-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 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.....

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[Guest guest]

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! ) 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.

[Guest guest]

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! 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.

[Guest guest]

Golly, Bill, It amazes me how familiar everything you say sounds. I am a chronic worrier (always have been) and I worry and feel guilty that our lifestyle will have to change drastically if I do not get approved, since my position will be filled next month if I do not return. My husband has a decent job also, and we by no means live an extravagant lifestyle, we are very modest people who struggle like most to make it. I hope and pray that I do get approved, and I still worry that if I do, my daughter is already 15 and she will only get money for a few more years and then I will be unable to help her financially like I had hoped to be able to do should she need it. I was just wondering, my son is 9, so when my daughter turns 18, will her funds go to him, because the way they explained it to me, was that the kids get 1/2 of what I get, and their 1/2 gets split equally; so when my daughter turns 18, will my sons funds increase, essentially, will he get his sisters money? Boy he would LOVE that, he'd never let her live that down, not that I would burden them with trying to explain all of this to them, but I could just hear them now!! When I had my phone interview and they calculated my total pay (including the kids funds) and we calculated what my long term disability will pay, I will be bringing home about $50 less than my salary now. (until my daughter turns 18, if my son doesn't pick up her part).

I was the same way. When I first got the ON, I had to take off work for about 2 weeks, because I was essentially totally blind in my left eye. My vision returned somewhat, and I returned to work for about 10 days. I was a mess! So I took a couple of weeks off, thinking it was an "exacerbation" or whatever. I was newly diagnosed and was still learning a lot about MS (I thought it was terminal, it was right around the time Pryor died) and I told my co-workers and supervisor that I was going to take some of my vacation time that I needed to get rid of anyway, and then I would return as scheduled. and went to my primary care physician. Thankfully, I have a good relationship with him, and I broke down. He was very supportive and put me on anti-depressants and gave me some time off work. I have used that time to try to educate myself, but sometimes I am like an ostrich and just want to bury my head in the sand and pretend this doesn't exist. But, my body doesn't let me forget for long. After I learned that I wasn't going to die from this, I, too, became very thankful and try to convince myself that I'm actually quite lucky, because really, what are the odds that I'll get some other disease that would be worse, like cancer? (if the statistics are high, please no one tell me, let me live this fantasy for a while )

Anyway, I hope I'm not getting on anyone's nerves, I know my posts are always long, but it just feels so darn good to talk about this and get this stuff off my chest that I've been harboring for so long. Thank you all so much for listening.

~

* 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=39666/*http://messenger.yahoo.com>>>>>> <http://us.rd.yahoo.com/mail_us/taglines/postman7/*http://us.rd.yahoo.com/evt=39666/*http://messenger.yahoo.com> >>

[Guest guest]

This is a good place to talk about your concerns about your health.

This MS treats everyone differently so when you ask a question you may

get several answers.

You are right about the funds your daughter get will eventually be your

daughters when she becomes 18. I am not sure how all that works out but

you are correct.

If you do finally get diagnosed with MS Darlene in this group her

daughter got a $3000 scloroship through the National MS Society. I

want to check into that when my son graduates.

My first year with my I went to mow my yard, I have no balance now but

I can still use our riding mower ok. I made a big mistake mowing on a

very warm day here in Indiana. I did not know at that time heat was so

bad to my MS. My eyes were really effected and at that time I found

just becoming cooler helped my eyes out a lot. Last summer I spent a

little too much time in the sun and I wound up with double vision. I

figured it would clear up easily but it didn't. My neurologist wasn't

too happy I did not tell him sooner. He had me go through 2 different

Steroid treatments. The first one did not help so he had me do the

second one with a different kind of steroid. I also have type 1

diabetes so some of my trouble may have been from it. My Double vision

did finally clear up but it took 8 months to do so. I am still not sure

if the steroids helped or if it just went away on it's own.

My wife is here with lunch so I may send more info later.

Bill

MSdiabetes

My web page

Damron wrote:

Golly, Bill, It amazes me how familiar everything you say

sounds. I am a chronic worrier (always have been) and I worry and feel

guilty that our lifestyle will have to change drastically if I do not

get approved, since my position will be filled next month if I do not

return. My husband has a decent job also, and we by no means live an

extravagant lifestyle, we are very modest people who struggle like most

to make it. I hope and pray that I do get approved, and I still worry

that if I do, my daughter is already 15 and she will only get money for

a few more years and then I will be unable to help her financially like

I had hoped to be able to do should she need it. I was just wondering,

my son is 9, so when my daughter turns 18, will her funds go to him,

because the way they explained it to me, was that the kids get 1/2 of

what I get, and their 1/2 gets split equally; so when my daughter turns

18, will my sons funds increase, essentially, will he get his sisters

money? Boy he would LOVE that, he'd never let her live that down, not

that I would burden them with trying to explain all of this to them,

but I could just hear them now!! When I had my phone interview and they

calculated my total pay (including the kids funds) and we calculated

what my long term disability will pay, I will be bringing home about

$50 less than my salary now. (until my daughter turns 18, if my son

doesn't pick up her part).

I was the same way. When I first got the ON, I had to take off

work for about 2 weeks, because I was essentially totally blind in my

left eye. My vision returned somewhat, and I returned to work for about

10 days. I was a mess! So I took a couple of weeks off, thinking it was

an "exacerbation" or whatever. I was newly diagnosed and was still

learning a lot about MS (I thought it was terminal, it was right around

the time Pryor died) and I told my co-workers and supervisor

that I was going to take some of my vacation time that I needed to get

rid of anyway, and then I would return as scheduled. and went to my

primary care physician. Thankfully, I have a good relationship with

him, and I broke down. He was very supportive and put me on

anti-depressants and gave me some time off work. I have used that time

to try to educate myself, but sometimes I am like an ostrich and just

want to bury my head in the sand and pretend this doesn't exist. But,

my body doesn't let me forget for long. After I learned that I wasn't

going to die from this, I, too, became very thankful and try to

convince myself that I'm actually quite lucky, because really, what are

the odds that I'll get some other disease that would be worse, like

cancer? (if the statistics are high, please no one tell me, let me live

this fantasy for a while )

Anyway, I hope I'm not getting on anyone's nerves, I know my

posts are always long, but it just feels so darn good to talk about

this and get this stuff off my chest that I've been harboring for so

long. Thank you all so much for listening.

~

-----

Original Message -----

From:

MS-Bill

To:

MSersLife

Sent:

Friday, June 02, 2006 7:24 PM

Subject:

Re: New member

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=39666/*http://messenger.yahoo.com>

>>

>

>

> <http://us.rd.yahoo.com/mail_us/taglines/postman7/*http://us.rd.yahoo.com/evt=39666/*http://messenger.yahoo.com>

>

>

[Guest guest]

Hello,

My Name is Ron and I'm 48 and live in New York.

I had a work accident back in 1992 in which I was

crushed. Since then I've undergone 15 surgerys,

and live with pretty bad pain everyday.

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.

I'm Looking forward to getting to know some of you

and hearing about your lives and how you cope on

a daily basis.

Thanks for being here,

Be well,

Ron

[Guest guest]

Montee,Does this machine kill bartonella too ?Deepak

 

Sylvia,

I had lyme and killed it with a Doug coil machine which is pretty easy to operate.. I built the one I use, but since building that first one, I have built several for friends and others in need of a coil machine. I talked to Stolar and Doug MacLean, the suggested I form a business so I could help people with the illnesses. Our website is www.coilmachinesnw.com, you might look at

it.  Call or email me if you have any questions.Sincerely,

Montee

To: Lyme_and_Rife

Sent: Tuesday, August 7, 2012 6:52 AM Subject: 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