Re: update

[Guest guest]

Debbie: I am soooo thrilled for you! That is wonderful! A new life is definitely on the way. I know going back to work will be great for you. Holding you in the light...love, Darlene in Fl.

[Guest guest]

Adrienne

Dr. Shields might just want all the facts before writing a report. There are

many patients who get upset about a test result when they have only the lab

values. Labs are influenced by meds, supplements and medical conditions.

Also, some appear abnormal when compared to the normal range, but might be

normal for your age. It is complex and he might want to have all the info

first. I would be glad that he wants all the puzzle pieces before telling

you what he is thinking. I know this is frustrating and that waiting is a

real pain. Thinking of you.

laurie

> From: moonchild62579@...

> Reply-To:

> Date: Thu, 4 Sep 2003 06:20:23 EDT

> To:

> Subject: update

>

> Hey guys,

> Yay, I'm actually getting a few posts in! I've been up all night in a good

> bit of pain. My symptoms are really progressing. I dont like it at all. My

> complex partial seizures are still coming several times a week and i know the

> petite mal maybe even more than that. Myoclonus is starting to bother me more.

> Now

> I know all this used to be worse before seizure meds but the ones i used to be

> on controlled it better, just hated the side effects, I just wish i could

> find some good meds to help. Then of course like I said in past post, had that

> weird episode on saturday. And had another mild SLE last week. My pain levels

> are increasing to where morphine isnt even helping much anymore. Dr is upping

> topamax hoping it will at least help with the neuropathy and the seizures and

> might add another one too (zonegran or lamictal). But needs to talk with

> neuro.

> Well, thats yet another prob. Dr shields is giving me problems. He has my test

> results back, but wont let me know them. I've sent him some of my records but

> not all of them. I gotta go sign for some of them and that means going out of

> town or faxing for them and figuring out phone numbers and such. Ive just

> been so busy with so many things, I've only gotta get UVA to send him stuff,

> send

> him some records I just got sent to me, and then also he wants my PCP to send

> him a summary of my history for some reason though my PCP hasnt really been

> included in it all, its really been my rheumatologist and old neuro that took

> most care of me. So I'm gonna have them send it instead. But Dr. shields said

> he wanted their summaries and to converse with them before he could give me my

> results.......now why cant he give them to me before then? I asked if he

> wanted all my records, if that was why? his nurse/office asst said no that

> wasnt it

> that he just wanted more info and history from my PCP or the person in charge

> of my care. What do you all think this means? Dont you think if it was all

> fine he would just send them to me? Or maybe they are all ok and he is trying

> to

> figure out the next step? I dont know. its just sooo frustrating not knowing!

> anyways, I am trying to get these things faxed to him by the end of the week.

> Also trying to see Dr. Shoffner down in Atlanta for Muscle biopsy and the

> rest of the tests I need once I figure out these results and can get Dr.

> Shields

> to refer me. I need a local neuro or internist at least. Its so frustrating

> not having a doctor here that knows enough. Need to also find a better

> gastroenterologist that knows more about dysmotility, still waiting to hear

> from UVA. I

> did see a new immunologist Tuesday about my reoccuring infections and

> possible allergies I might have. She did a bunch of allergy tests and PFT's

> (since

> Ive had alot of issues with breathing lately). She did decide I do have asthma

> and possibly other lung probs and added singular to my inhalers and said that

> if that doesnt help might refer me to a local pulmonologist- which is what ive

> been wanting. My PFT's had decreased a bit since my last ones. I didnt really

> understand the numbers and she only did a basic test. I want more done, like

> an exercize one and others. She also put me on a 3 week course of strong

> antibiotics for my infections and upped my steriods to 40 mgs (from 5 mgs) and

> going

> on a slow tapper. We will see how that goes. Oh, I did get my tests back from

> my gyno last week. She had done a test for my thyroid to see how its doing.

> My levels are better (low normal) than they have been in awhile so thats a

> plus. Also, potassium is almost in normal range. It rarely is in normal I

> think.

> Now I just need to figure out how my blood sugar has been and liver counts.

> Forgot to ask my other dr about that but guessing they werent too bad- they

> are

> always a bit off, used to that. Ok, anyways, Friday I get to go to the social

> security office and apply for SSI and SSD. I'm really hoping to get it. Any

> suggestions on what to do since I dont have a clear diagnosis? Just alot of

> small

> diagnosises. I was just planning on listing the diangosises I do have and

> then the major sympstoms that really cause me the probs. Guess thats all I can

> do. But thought I would ask. Gotta finish filling out the paperwork today.

> Been

> such a busy week with doctors appts and such. I need to go to sleep, havent

> been- so much pain. I gotta wake up for therapist in afternoon. Hopefully I

> will

> be able to sleep. Ty guys for letting me vent. I just needed to. I'm hoping

> to be able to post more now, still very symptomatic and busy and out of it but

> am going to try and keep up. Thinking and caring about you all.

> love,

> adrienne

>

[Guest guest]

---Adrienne,

I'm sooooo sorry things are getting worse for you. I'm glad you are

better today than yesterday. It sounds like seeing a metabolic gent.

is going to be a good thing. I wish I could see one. You know I

will be praying about your visit.

You have been fighting this thing and really hanging in there. It

seems from the time I met every one on , we've all gotten

slowly worse, although some faster than others.

I just wish somebody besides dr. cohen and a few others, new we were

out there.

Unless this happens to someone famous nobody will know.

Well we on know you're here and at least that will help

alittle.

You will be in my thoughts today as well as all of us here. I think

about everyone every day because I know our minute by minute battles.

Keep fighting!!!!

HUHE HUGGS COMING YOU WAY, CAN YOU FEEL IT? :- )

//*_*\\ You hang in there girl!!!!!!!!!!!!!

In , moonchild62579@a... wrote:

> Hey guys,

> Been trying to keep up with the posts/emails and have been reading

most of

> them, so yall better know that each one of you is in my thoughts

daily. I am

> having a tough time lately. I had a bad SLE that went on for 2 days

and I am

> still having issues from it. My speech is really messing up on and

off where I

> have probs with my tongue getting tied and getting words out and my

vocal cords

> seem very weak. more confusion spells. I've been sleeping 16+ hrs

it seems

> every other day and then getting very little sleep the next. My

pain level is

> crazy even with dilaudid. I'm feeling weaker and weaker each day, I

am able to do

> less and less. I get out of breath quicker these past few days and

my tremors

> are much more pronounced. I'm having seizures almost every day it

seems. And

> the past 3 days I've only been able to eat one small meal a day or

an ensure

> because of swallowing issues and severe nausea and fullness

feeling. I'm getting

> scared to tell you the truth. I know I'm crashing because of an

infection I

> got going on in my respiratory tract. I saw my local neuro Monday

and she was

> no help at all! She doesnt care that my seizures are more frequent

or about any

> of the other stuff. She said I do need a muscle biopsy but didnt do

anything

> to get that done. She mad suggestions of alot of things but did

nothing about

> them. She said just see her in a few months unless my probs

continue to get

> worse. Well, I am seeing the metabolic geneticist on Thursday so I

am hoping

> that will get me somewhere. She's supposed to be very good. I am

also going to

> ask her about other Drs. at childrens that I might be able to see,

especially a

> neuro and GI dr. I saw my therapist yesterday and she seemed very

concerned

> with how I seemed to have such a visible increase in symptoms in

just 2 weeks.

> She said she wished she could do more for me. I am so thankful for

her. I'm

> thankful for you all too and my mother- if I didnt have you all and

the few good

> doctors I do have, I would feel so lost and hopeless. I just wanted

to thank

> yall. I'm sorry if this seems so depressing- believe me, yesterday

I was worse

> off, much worse mentally but my therapist helped with that aspect.

I just

> realize that I still have hopes and dreams I haven't accomplished

and this

> disease, I am gonna fight it to the very end and then some- I can't

let it get the

> best of me, or I will die trying. I'm not giving up. Thank you guys

so much for

> being here for me- this was a major vent I needed to do. I know

alot of you

> are having hard times too and I am glad we arent alone in this,

though I hate we

> all have to have this disease in common. Well, I've done my venting

and

> hurting cuz of it, grr. Hope yall have a good weekend and take it

easy.

> take care,

> Adrienne

[Guest guest]

Dear Adrienne, I'm sorry to hear things are so tough with you right

now. You'd think with all your symptoms they'd be doing more for

you. I hpe you can get into that metabolic geneticist soon- maybe a

few fords from her would ease your way into all the other docs.

Malisa sent me a picture of the (mito memory- I can' tthink of its

name) special day last weekend. it was nice to see a pic of you.

Take care, Celia

> Hey guys,

> Been trying to keep up with the posts/emails and have been reading

most of

> them, so yall better know that each one of you is in my thoughts

daily. I am

> having a tough time lately. I had a bad SLE that went on for 2 days

and I am

> still having issues from it. My speech is really messing up on and

off where I

> have probs with my tongue getting tied and getting words out and my

vocal cords

> seem very weak. more confusion spells. I've been sleeping 16+ hrs it

seems

> every other day and then getting very little sleep the next. My pain

level is

> crazy even with dilaudid. I'm feeling weaker and weaker each day, I

am able to do

> less and less. I get out of breath quicker these past few days and

my tremors

> are much more pronounced. I'm having seizures almost every day it

seems. And

> the past 3 days I've only been able to eat one small meal a day or

an ensure

> because of swallowing issues and severe nausea and fullness feeling.

I'm getting

> scared to tell you the truth. I know I'm crashing because of an

infection I

> got going on in my respiratory tract. I saw my local neuro Monday

and she was

> no help at all! She doesnt care that my seizures are more frequent

or about any

> of the other stuff. She said I do need a muscle biopsy but didnt do

anything

> to get that done. She mad suggestions of alot of things but did

nothing about

> them. She said just see her in a few months unless my probs continue

to get

> worse. Well, I am seeing the metabolic geneticist on Thursday so I

am hoping

> that will get me somewhere. She's supposed to be very good. I am

also going to

> ask her about other Drs. at childrens that I might be able to see,

especially a

> neuro and GI dr. I saw my therapist yesterday and she seemed very

concerned

> with how I seemed to have such a visible increase in symptoms in

just 2 weeks.

> She said she wished she could do more for me. I am so thankful for

her. I'm

> thankful for you all too and my mother- if I didnt have you all and

the few good

> doctors I do have, I would feel so lost and hopeless. I just wanted

to thank

> yall. I'm sorry if this seems so depressing- believe me, yesterday I

was worse

> off, much worse mentally but my therapist helped with that aspect. I

just

> realize that I still have hopes and dreams I haven't accomplished

and this

> disease, I am gonna fight it to the very end and then some- I can't

let it get the

> best of me, or I will die trying. I'm not giving up. Thank you guys

so much for

> being here for me- this was a major vent I needed to do. I know alot

of you

> are having hard times too and I am glad we arent alone in this,

though I hate we

> all have to have this disease in common. Well, I've done my venting

and

> hurting cuz of it, grr. Hope yall have a good weekend and take it

easy.

> take care,

> Adrienne

[Guest guest]

Adrienne

Never hesitate to let us know if you are hurting, scared or frustrated. We

all have those times and you are not alone. Sometimes it helps to focus on

someone else's problems instead of our own. I hope the new doc helps.

laurie

> From: moonchild62579@...

> Reply-To:

> Date: Fri, 10 Oct 2003 07:31:45 EDT

> To:

> Subject: update

>

> Hey guys,

> Been trying to keep up with the posts/emails and have been reading most of

> them, so yall better know that each one of you is in my thoughts daily. I am

> having a tough time lately. I had a bad SLE that went on for 2 days and I am

> still having issues from it. My speech is really messing up on and off where I

> have probs with my tongue getting tied and getting words out and my vocal

> cords

> seem very weak. more confusion spells. I've been sleeping 16+ hrs it seems

> every other day and then getting very little sleep the next. My pain level is

> crazy even with dilaudid. I'm feeling weaker and weaker each day, I am able to

> do

> less and less. I get out of breath quicker these past few days and my tremors

> are much more pronounced. I'm having seizures almost every day it seems. And

> the past 3 days I've only been able to eat one small meal a day or an ensure

> because of swallowing issues and severe nausea and fullness feeling. I'm

> getting

> scared to tell you the truth. I know I'm crashing because of an infection I

> got going on in my respiratory tract. I saw my local neuro Monday and she was

> no help at all! She doesnt care that my seizures are more frequent or about

> any

> of the other stuff. She said I do need a muscle biopsy but didnt do anything

> to get that done. She mad suggestions of alot of things but did nothing about

> them. She said just see her in a few months unless my probs continue to get

> worse. Well, I am seeing the metabolic geneticist on Thursday so I am hoping

> that will get me somewhere. She's supposed to be very good. I am also going to

> ask her about other Drs. at childrens that I might be able to see, especially

> a

> neuro and GI dr. I saw my therapist yesterday and she seemed very concerned

> with how I seemed to have such a visible increase in symptoms in just 2 weeks.

> She said she wished she could do more for me. I am so thankful for her. I'm

> thankful for you all too and my mother- if I didnt have you all and the few

> good

> doctors I do have, I would feel so lost and hopeless. I just wanted to thank

> yall. I'm sorry if this seems so depressing- believe me, yesterday I was worse

> off, much worse mentally but my therapist helped with that aspect. I just

> realize that I still have hopes and dreams I haven't accomplished and this

> disease, I am gonna fight it to the very end and then some- I can't let it get

> the

> best of me, or I will die trying. I'm not giving up. Thank you guys so much

> for

> being here for me- this was a major vent I needed to do. I know alot of you

> are having hard times too and I am glad we arent alone in this, though I hate

> we

> all have to have this disease in common. Well, I've done my venting and

> hurting cuz of it, grr. Hope yall have a good weekend and take it easy.

> take care,

> Adrienne

>

[Guest guest]

a,

I'm sorry for all that you went through. I'm so glad that you are home though, as I know you are happy about that as well. I'll be praying for a quick and complete recovery for you. I know you are anxious to get back to school. Hang in there and thanks for the update. Feel well,

[Guest guest]

Dear krisina, it's so nice to see you well enough to be posting

again. malisa was sort of filling us in on what happened to you,

until she left for Atlanta. I'm glad to hear you are mostly

recovered but really hope your arm becomes functional again soon.

Hope you can find a rental power chair too. Take care of yourself-

don't go back to work too soon, Celia

> hi everyone!

> I just got on my computer for the first time in 11 days. i think i

am

> just going to clear messages and go from there. i did see some

about

> migraines that i will look on. i have been quiet, as i have been in

the

> hospital from Oct. 10- Oct. 20. I went in for a simple exercise

oximetry

> test. The techs realized I was having a severe migraine and I had a

> little right sided eye droop. After the test, they took me across

the

> hall to the ER for medication. Well, I found out that I do not

tolerate

> Nubane (sp?) Within 30 seconds of half the dose being given to me,

my

> face was numb and tingly and I was able to push the call light. By

the

> time the nurse arrived, I could not move my legs, left arm, neck and

> barely the facial muscles. Wasn't to easy to move my pulmonary

muscles

> either! Well, they decided to admit me. That was Friday night and

they

> didn't bring a neuro in until Sunday, which irritated me. The legs

and

> neck and face did start to work again in about 6 hours, but I still

do

> not have control of the left arm. It feels like a dead piece of

wood

> hanging from my side. What is interesting is that the OT would

> straighten the arm out, have me try and bend it and you could see

the

> muscles move (they are functional), and I could see them move, but

> nothing would happen. Signals are probably getting messed up. The

one

> neurologist thinks it was more of a reaction than an SLE, maybe a

little

> of both, but more because of the reaction due to the meds, which I

do

> agree with. He thinks if the headache starts to leave the arm will

come

> back. Until then, I am left going in circles, as I use a manual

> wheelchair and can't find any place that rents motorized chairs :-)

My

> students would love to see that! LOL. I am ready to get back to

work as

> soon as possible. I know this is all putting my job in jeopardy. I

did

> contact Dr. Peltier and I don't think she is to excited about me

going

> back anytime soon. We will see what happens.

> I am sending out good vibes to all who need them, which I know is

> everyone! I am sorry I won't get to all individual posts.

Adrienne,

> good to here you liked your new doctor. , sorry to hear that

your

> appointment, or lack of appointment, went like it did. Carol,

sending

> good thoughts your way on your recovery. All others that I know I

> forgot, I am thinking of you all. Take care!

> Smiles,

> a

[Guest guest]

a

I am glad you are home, but sorry you have had to go through this. Please

take care of yourself. You and your arm are the first thing you should be

taking care of. I know how important work is to you, but I am concerned that

you will continue to have problems if you go back too soon.

Hugs,

laurie

>

> Reply-To:

> Date: Tue, 21 Oct 2003 10:26:54 -0500

> To:

> Subject: update

>

> hi everyone!

> I just got on my computer for the first time in 11 days. i think i am

> just going to clear messages and go from there. i did see some about

> migraines that i will look on. i have been quiet, as i have been in the

> hospital from Oct. 10- Oct. 20. I went in for a simple exercise oximetry

> test. The techs realized I was having a severe migraine and I had a

> little right sided eye droop. After the test, they took me across the

> hall to the ER for medication. Well, I found out that I do not tolerate

> Nubane (sp?) Within 30 seconds of half the dose being given to me, my

> face was numb and tingly and I was able to push the call light. By the

> time the nurse arrived, I could not move my legs, left arm, neck and

> barely the facial muscles. Wasn't to easy to move my pulmonary muscles

> either! Well, they decided to admit me. That was Friday night and they

> didn't bring a neuro in until Sunday, which irritated me. The legs and

> neck and face did start to work again in about 6 hours, but I still do

> not have control of the left arm. It feels like a dead piece of wood

> hanging from my side. What is interesting is that the OT would

> straighten the arm out, have me try and bend it and you could see the

> muscles move (they are functional), and I could see them move, but

> nothing would happen. Signals are probably getting messed up. The one

> neurologist thinks it was more of a reaction than an SLE, maybe a little

> of both, but more because of the reaction due to the meds, which I do

> agree with. He thinks if the headache starts to leave the arm will come

> back. Until then, I am left going in circles, as I use a manual

> wheelchair and can't find any place that rents motorized chairs :-) My

> students would love to see that! LOL. I am ready to get back to work as

> soon as possible. I know this is all putting my job in jeopardy. I did

> contact Dr. Peltier and I don't think she is to excited about me going

> back anytime soon. We will see what happens.

> I am sending out good vibes to all who need them, which I know is

> everyone! I am sorry I won't get to all individual posts. Adrienne,

> good to here you liked your new doctor. , sorry to hear that your

> appointment, or lack of appointment, went like it did. Carol, sending

> good thoughts your way on your recovery. All others that I know I

> forgot, I am thinking of you all. Take care!

> Smiles,

> a

>

>

[Guest guest]

Thanks Celia. I admire your spirit so much too. You have helped me out a lot the past couple of months with your insights.

Smiles,

a

a, I have say how much I admire your spirit and optimism. That is really too bad that you are under such pressure to return to work, but I hope it will work out OK for you. I'm glad you are seeing the OT for help with the WC and the arm. Take it easy though, Celia

[Guest guest]

Laurie,

I will really try to take it easy tomorrow. My schedule was revised due to an assembly tomorrow. I thought I would just see the kids who I could, but the principal changed my hours so I could see everyone. She did conveniently cut 1/2 hour off my scheduled time. I will show up, just as I know I will need the time to get up to my classroom and count the time! I won't overdo though. I am just testing the waters tomorrow. We will see what comes of everything. I know you know how I am with the kids, as you are the same way ! :-)

Smiles,

a

aI am glad you are going to get a power chair. It takes some time, but youwill be glad you have it when it finally gets there.Don't over-do at work my friend. I know what a perfectionist you are when itcomes to kids.Hugs,laurie

[Guest guest]

,

Sorry to read about your mom. Hopefully it has been caught early and can be treated or removed without any complications. I will be praying. Please keep us posted. Hugs,

[Guest guest]

,

You'll both be in my prayers.

Did they discuss with you the posibility of " false positives " on the

blood test? I had (I think it is called a CA125) test done the

beginning of the year and read later that it is only 50% accurate.

I don't recall if that meant that there's only a 50% chance of

cancer actually showing up -- or if they do get false positives in

that test.

(BIG HUG)

Maggie

> My mother was diagnosed with ovarian cancer by blood test

yesterday. I had suspected she had another cyst, as several years

[Guest guest]

,

My prayers are with your Mom and you that everything turns out OK.

Hugs too,

Ayars wrote:

My mother was diagnosed with ovarian cancer by

blood test yesterday. I had suspected she had another cyst, as

several years ago she had a benign ovarian cyst that weighed 11

pounds! Anyway, I took her in to see if there was one Wednesday, and

then Thursday we got the call. The test tests for a certain hormone

that becomes elevated when ovarian cancer is present. She has been

having kidney problems lately, which I suspect is interrelated. If

nothing else, the cyst is putting pressure on them. Meantime, my

mother has a visit with a urologist Monday, and an ultrasound

Tuesday. I will keep you all updated.

Prayers much appreciated.

HUGS

Medical advice, information, opinions, data and statements contained

herein are not necessarily those of the list moderators. The author of

this e mail is entirely responsible for its content. List members are

reminded of their responsibility to evaluate the content of the

postings and consult with their physicians regarding changes in their

own treatment.

Personal attacks are not permitted on the list and anyone who sends one

is automatically moderated or removed depending on the severity of the

attack.

[Guest guest]

,

My thoughts and prayers are with you and your mother. Please keep us updated.

Hugs,a

My mother was diagnosed with ovarian cancer by blood test yesterday. I had suspected she had another cyst, as several years ago she had a benign ovarian cyst that weighed 11 pounds! Anyway, I took her in to see if there was one Wednesday, and then Thursday we got the call. The test tests for a certain hormone that becomes elevated when ovarian cancer is present. She has been having kidney problems lately, which I suspect is interrelated. If nothing else, the cyst is putting pressure on them. Meantime, my mother has a visit with a urologist Monday, and an ultrasound Tuesday. I will keep you all updated.

Prayers much appreciated.

HUGS

[Guest guest]

,

My prayers will certainly be with you and your mom as you go thru yet another trial. I'm sure this is scary for everyone.

Please keep us up to date and know that we are always here for you.

Hugs!

Alice

[Guest guest]

,

will be thinking and praying for your mother. Hopefully you caught it in time.

Janet Sample

update

My mother was diagnosed with ovarian cancer by blood test yesterday. I had suspected she had another cyst, as several years ago she had a benign ovarian cyst that weighed 11 pounds! Anyway, I took her in to see if there was one Wednesday, and then Thursday we got the call. The test tests for a certain hormone that becomes elevated when ovarian cancer is present. She has been having kidney problems lately, which I suspect is interrelated. If nothing else, the cyst is putting pressure on them. Meantime, my mother has a visit with a urologist Monday, and an ultrasound Tuesday. I will keep you all updated.

Prayers much appreciated.

HUGS

Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment.Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack.

[Guest guest]

we will keep you both in our prayers!

hugs

O

[Guest guest]

You and your mother are in my thoughts and prayers.

Hugs,

laurie

>

> Reply-To:

> Date: Fri, 31 Oct 2003 13:30:19 -0600

> To: <adultmito >

> Cc: < >, <MitoAngels >

> Subject: update

>

> My mother was diagnosed with ovarian cancer by blood test yesterday. I had

> suspected she had another cyst, as several years ago she had a benign ovarian

> cyst that weighed 11 pounds! Anyway, I took her in to see if there was one

> Wednesday, and then Thursday we got the call. The test tests for a certain

> hormone that becomes elevated when ovarian cancer is present. She has been

> having kidney problems lately, which I suspect is interrelated. If nothing

> else, the cyst is putting pressure on them. Meantime, my mother has a visit

> with a urologist Monday, and an ultrasound Tuesday. I will keep you all

> updated.

>

> Prayers much appreciated.

>

> HUGS

>

>

>

>

[Guest guest]

Hanna,

I understand, I hope you are doing okay. I only work 2 1/2 hours a day, so I really don't think I would be eligible for protected leave. The comments have stopped and the principal is sort of supportive. It really depends on her mood. She is after me to get a motorized wheelchair, which I am in the process of doing, but I don't think she realizes how long it can take! :-)

Smiles,

a

a, sorry it's taken me so long to reply I have had so much going on lately. I hope you're feeling better. I'm not sure how many hours you work but to be eligible for family medical leave, you must have worked a minimum of 1250 hours in the previous 12 months before you become eligible for the protected leave. I'm not sure what kind of comments you are receiving, but, if they are discriminatory in any nature, they are breaking the law and you should go to hr in that case

[Guest guest]

Adrienne,

Great news! Sounds like you got an early Christmas present in your new physician. I hope that he will continue to work with you and be able to help you out in many different ways. Glad you are getting some rest. Is your incision site infection better now?? When do you expect results from Shoffner? I've heard he is behind. Hope its not too long of a wait. Thanks for updating..I've had you on my mind.

Have a really great Christmas and a great and healthier new year to come.

Blessings,

[Guest guest]

Thought I'd give another little update. I found a wonderful and knowledgable neurologist in my own town finally! He is fairly new to the area and only has appts on Wednesdays and Saturdays here then the rest of the week he works closer to DC

Hi Adrienne,

I am sooo glad you finally found a neuro who sounds really good! You need a neuro locally to help you manage everything and it sounds like you might have found someone.

I hope you get some rest and have a wonderful holiday!!!

Malisa

[Guest guest]

That is so great that you found someone who actually knows about mito and cares about you.

Janet Sample

update

Hey guys,Thought I'd give another little update. I found a wonderful and knowledgable neurologist in my own town finally! He is fairly new to the area and only has appts on Wednesdays and Saturdays here then the rest of the week he works closer to DC (I'm in a suburb about 20-25 miles outside of DC). He did his schooling in France mainly and is extremely knowledable not only in mito but in many other things. The only 2 downsides my mom and I found (since my mom comes with me in all my appts) was that his accent is pretty thick so hard to understand and in the beginning of the appt he seemed frustrated that I dont have a diagnosis yet and seemed to feel we should of looked into mito a long time ago. But as he looked over my records, heard my story and saw all the misdiagnosises I've gone through he seemed more understanding. He really wants me to get a diagnosis now and wants to start to help me see other drs for my other needs. He wants me to see a urologist right now for my bladder ! probs (I feel like I have a constant UTI with frequent urination and difficulty voiding, burning, etc). He says he wants me to get tests for a neurogenic bladder- has anyone gone through those tests? He's sending me to someone that specializes in those types of things and says I do need to get these tests ASAP so I can do all I can to avoid having to be cathaterized later on. He also mentioned that with my symptoms and what the exam showed with my lower extremeties with reflexes, weakness, numbness, etc that he just wants to rule out MS or other demylination disorders- especially a possible lesion on my cervical spine cuz the lower extremity symptoms including the bladder is what he sees in MS patients with cervical lesions. So I'm getting an MRI of my cervical spine and he also is ordering a lumbar MRI cuz of my lumbar lordosis and extreme lower back pain and stiffness and sciatic pain. I've been trying to get a dr to do a lumbar MRI for a long time and he didnt even hesit! ate. He also wants to do a Nerve conduction test and a more thorough o ne than the ones I've had before. He also gave me my scripts for my seizure meds and said that the dr that wanted to do the vagus nerve stimulator wasnt thinking about my whole situation at all. He also seemed offended that so many drs said it might be all in my head because it was obvious that this was something physical that was affecting multiple systems. He said that my pulmonologist seemed to be working with me with the lung issues well but that if they got worse that something probably would need to be done to help, also he said he would help me find a good local GI dr for my dysmotility and I think that he knows a good bit about dysautonomia (hes actually calls himself a neuro-vascular dr so he might be good for the SLEs and dysautonomia probs but he also knows alot about neuromuscular issues). He talked about doing other tests but he said I've got enough set up for now. I see him in 2 wks for the NCT. He also agreed that I need to be on CoQ10 now and then soon add in! the Carnitor. Also staying on the riboflavin. He didnt seem to make a big deal about me being on heavy duty narcotics but I think he might help me with a pain pump once that needs to be placed (dilaudid is really not helping my dysmotility out at all). Anyways, I just wanted to share all this with you all. I am so happy to find this guy and he will work with my geneticist in DC and everyone else. He said that once I get my tests back from Dr. Shoffner that we will do more then too- he was willing to do other tests for mito if they needed to be done but I told him I wanted to wait and see what all Dr. Shoffner did and what comes up. Anyways, I'm gonna try and make the chat tonite- I woke up alittle after 530 tonite so I will probably be up till 11 or 12. I'm still sleeping alot, usually around 16 hrs a day. I had to see a SS disability dr last week but they sent me to a rheumatologist- ugh, he said that my disability is mainly neurological and thats who I need to see but sa! id he would still help with me getting it since it seemed that I was t otally disabled though he said with my age he couldnt say it was a permanent disability. oh well, will let you know if anything changes with that. So crazy around the holidays- been so busy. My trip last week was to VA beach to see the boardwalk lit up and all but I was in bed most the trip- glad my parents had a good time though. Well, I'm thinking about you all over the holidays- keeping everyone in my prayers and even though I dont answer posts right now, I try to keep up with them mainly. Might try and answer a few over the next few days. Hope to see some of yall in chat. Thanks for letting me share this news, I'm just so happy and people back here (other than my mom) dont really understand. I just feel like I'm so close to a diagnosis that I (and my mom) have been searching for most my life now and I feel this group has helped me get so close to it. Thanks again and happy holidays!take care,Adrienne Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment.Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack.

[Guest guest]

Adrienne,

I am so glad you found a neurologist who is so good and is so close by. This must be an early holiday present for you! I am wishing you the best. Please know that you are always in my thoughts and prayers.

Smiles,

a

Hey guys,Thought I'd give another little update. I found a wonderful and knowledgable neurologist in my own town finally! He is fairly new to the area and only has appts on Wednesdays and Saturdays here then the rest of the week he works closer to DC (I'm in a suburb about 20-25 miles outside of DC). He did his schooling in France mainly and is extremely knowledable not only in mito but in many other things. The only 2 downsides my mom and I found (since my mom comes with me in all my appts) was that his accent is pretty thick so hard to understand and in the beginning of the appt he seemed frustrated that I dont have a diagnosis yet and seemed to feel we should of looked into mito a long time ago. But as he looked over my records, heard my story and saw all the misdiagnosises I've gone through he seemed more understanding. He really wants me to get a diagnosis now and wants to start to help me see other drs for my other needs. He wants me to see a urologist right now for my bladder probs (I feel like I have a constant UTI with frequent urination and difficulty voiding, burning, etc). He says he wants me to get tests for a neurogenic bladder- has anyone gone through those tests? He's sending me to someone that specializes in those types of things and says I do need to get these tests ASAP so I can do all I can to avoid having to be cathaterized later on. He also mentioned that with my symptoms and what the exam showed with my lower extremeties with reflexes, weakness, numbness, etc that he just wants to rule out MS or other demylination disorders- especially a possible lesion on my cervical spine cuz the lower extremity symptoms including the bladder is what he sees in MS patients with cervical lesions. So I'm getting an MRI of my cervical spine and he also is ordering a lumbar MRI cuz of my lumbar lordosis and extreme lower back pain and stiffness and sciatic pain. I've been trying to get a dr to do a lumbar MRI for a long time and he didnt even hesitate. He also wants to do a Nerve conduction test and a more thorough one than the ones I've had before. He also gave me my scripts for my seizure meds and said that the dr that wanted to do the vagus nerve stimulator wasnt thinking about my whole situation at all. He also seemed offended that so many drs said it might be all in my head because it was obvious that this was something physical that was affecting multiple systems. He said that my pulmonologist seemed to be working with me with the lung issues well but that if they got worse that something probably would need to be done to help, also he said he would help me find a good local GI dr for my dysmotility and I think that he knows a good bit about dysautonomia (hes actually calls himself a neuro-vascular dr so he might be good for the SLEs and dysautonomia probs but he also knows alot about neuromuscular issues). He talked about doing other tests but he said I've got enough set up for now. I see him in 2 wks for the NCT. He also agreed that I need to be on CoQ10 now and then soon add in the Carnitor. Also staying on the riboflavin. He didnt seem to make a big deal about me being on heavy duty narcotics but I think he might help me with a pain pump once that needs to be placed (dilaudid is really not helping my dysmotility out at all). Anyways, I just wanted to share all this with you all. I am so happy to find this guy and he will work with my geneticist in DC and everyone else. He said that once I get my tests back from Dr. Shoffner that we will do more then too- he was willing to do other tests for mito if they needed to be done but I told him I wanted to wait and see what all Dr. Shoffner did and what comes up. Anyways, I'm gonna try and make the chat tonite- I woke up alittle after 530 tonite so I will probably be up till 11 or 12. I'm still sleeping alot, usually around 16 hrs a day. I had to see a SS disability dr last week but they sent me to a rheumatologist- ugh, he said that my disability is mainly neurological and thats who I need to see but said he would still help with me getting it since it seemed that I was totally disabled though he said with my age he couldnt say it was a permanent disability. oh well, will let you know if anything changes with that. So crazy around the holidays- been so busy. My trip last week was to VA beach to see the boardwalk lit up and all but I was in bed most the trip- glad my parents had a good time though. Well, I'm thinking about you all over the holidays- keeping everyone in my prayers and even though I dont answer posts right now, I try to keep up with them mainly. Might try and answer a few over the next few days. Hope to see some of yall in chat. Thanks for letting me share this news, I'm just so happy and people back here (other than my mom) dont really understand. I just feel like I'm so close to a diagnosis that I (and my mom) have been searching for most my life now and I feel this group has helped me get so close to it. Thanks again and happy holidays!take care,Adrienne