Fatigue and Hot Flashes

[Guest guest]

Hi Everyone,

I haven't posted in a long time. I hope everyone is doing well. I

was wondering if anyone struggles with incredible fatigue? I am on

Dexedrine to help with it - which is initially does in the morning

but I just feel like I can't function.

The other question I have is - does anyone struggle with always

being HOT or having HoT Flashes? I asked my Ob/Gyn if I was perhaps

perimenoupausal and he said no. I have struggled with this for the

last couple of years and I am 35. Just wondering if it something

w/MS or MS meds - I am on Betaseron, Dexedrine, Darvocet, Neurontin

and a couple of other things. Unfortunately- the meds have

increased again lately. Sorry, I just need to check in with people

who understand what I am talking about.

I also have lost complete feeling in my finger tips and toes. Last

summer I lost feeling in my face and tongue. It got a little better

but now it feels like when you go to the dentist for work and your

face is numb. Anyone else have this too?

THanks a bunch for any feed back,

[Guest guest]

Hi , the 'face deal'--numbness, etc, sounds to me like what i have--trigeminal neuralgia--there is what they refer to as "MS related TN"--and i do also, have the hot sensations--having it now as a matter of fact. I am 47, so it could be perimenopausal for me. The neurontin will help with the TN. Provigil i would think would be better than dexedrine---ask your neuro.. good to see you here. blessings,love, light, laughter, kate

Attachment: vcard [not shown]

[Guest guest]

! Hi! How are you (other than these things lol)?? How is your son doing? I have trouble with fatigue, but right now it doens't sound like it compares to the fatigue you're experiencing. Is this a constant thing for you, or does it come and go? Months/days/weeks on and off? Is it worse when it's hot? Mine is. Did the doc say why he feels you're not perimenopausal? You're at a good age for it. I know I began noticing "signs" by the time I was 35 (I'm 36 now). Hugs, Challis Deao wrote: Hi Everyone,I haven't posted in a long time. I hope everyone is doing well. I was wondering if anyone struggles with incredible fatigue? I am on Dexedrine to help with it - which is initially does in the morning but I just feel like I can't function.The other question I have is - does anyone struggle with always being HOT or having HoT Flashes? I asked my Ob/Gyn if I was perhaps perimenoupausal and he said no. I have struggled with this for the last couple of years and I am 35. Just wondering if it something w/MS or MS meds - I am on Betaseron, Dexedrine, Darvocet, Neurontin and a couple of other things. Unfortunately- the meds have increased again lately. Sorry, I just need to check in with people who understand what I am talking about.I

also have lost complete feeling in my finger tips and toes. Last summer I lost feeling in my face and tongue. It got a little better but now it feels like when you go to the dentist for work and your face is numb. Anyone else have this too?THanks a bunch for any feed back,

All-new Yahoo! Mail - Fire up a more powerful email and get things done faster.

[Guest guest]

I am having a really bad time with the fatigue right now. So, are you affected all the time or does it just come at times during the day? When it hits it is so overwhelming and it's impossible for me to stay awake. I don't take anything for it because my fatigue comes in spells and doesn't affect me year around.

Hot flashes? Yes. But then I am 55 and the right age for it I guess. When I get hot it feels like I'm going to ignite!

I do have facial numbness including my entire head and neck at times but it isn't complete numbing like the dentist. I also have Trigeminal Neuralgia. Do you have pain in your jaw or ear area? How much Neurontin are you taking? Maybe you aren't taking enough.

I'm glad you wrote, . I've been wondering about you.

hugs)))

Sharon (MSersLife Group Owner/Creator)

It's not easy taking my problems one at a time when they refuse to get in line. ~Ashleigh Brilliant

Fatigue and Hot Flashes

Hi Everyone,I haven't posted in a long time. I hope everyone is doing well. I was wondering if anyone struggles with incredible fatigue? I am on Dexedrine to help with it - which is initially does in the morning but I just feel like I can't function.The other question I have is - does anyone struggle with always being HOT or having HoT Flashes? I asked my Ob/Gyn if I was perhaps perimenoupausal and he said no. I have struggled with this for the last couple of years and I am 35. Just wondering if it something w/MS or MS meds - I am on Betaseron, Dexedrine, Darvocet, Neurontin and a couple of other things. Unfortunately- the meds have increased again lately. Sorry, I just need to check in with people who understand what I am talking about.I also have lost complete feeling in my finger tips and toes. Last summer I lost feeling in my face and tongue. It got a little better but now it feels like when you go to the

dentist for work and your face is numb. Anyone else have this too?THanks a bunch for any feed back,

[Guest guest]

Hi Challis,

It's so nice that you remembered my son. Boy, did that get

interesting. I think it was last October when I starting talking to

the group about his health issues. Then by December we were

finishing some testing. Well, to make a long story short. His

pediatrician got tired of waiting around for our ped.neuro to get

back with results and she had me take him to Loma University

Hospital to be admitted. Within 24 hours he was diagnosed with a

muscle disease. They don't know which one specifically yet. But

they are sure it's not MS. He was hospitalized three times since

Jan. They also did a muscle biopsy and nerve biopsy during the

second time in the hospital. They did an EMG on him with the

electric shocks and then one with a needle that is put into the

muscle. That's how they determined he needed the biopsy.

They sent everything to the MAYO clinic. Results showed muscle

breakdown and patchy denervation. He's on neurontin, carnitine

(they found a carnitine deficiency with him) and topamax. This year

has been really, really interesting. I must say though- they had

answers faster for him than I have ever had with my MS.

About my fatigue - it's pretty constant. There's only a couple

hours out of the day that I am not about to fall asleep. Then of

course I have trouble sleeping. I just want to feel normal. I have

three children and feel that most days I am just hanging on. I feel

horrible to be down too much. You know?

Thanks again for asking about our son! That really touched me.

Feels good to chat with all of you again!

> Hi Everyone,

> I haven't posted in a long time. I hope everyone is doing well. I

> was wondering if anyone struggles with incredible fatigue? I am on

> Dexedrine to help with it - which is initially does in the morning

> but I just feel like I can't function.

> The other question I have is - does anyone struggle with always

> being HOT or having HoT Flashes? I asked my Ob/Gyn if I was

perhaps

> perimenoupausal and he said no. I have struggled with this for the

> last couple of years and I am 35. Just wondering if it something

> w/MS or MS meds - I am on Betaseron, Dexedrine, Darvocet,

Neurontin

> and a couple of other things. Unfortunately- the meds have

> increased again lately. Sorry, I just need to check in with people

> who understand what I am talking about.

> I also have lost complete feeling in my finger tips and toes. Last

> summer I lost feeling in my face and tongue. It got a little

better

> but now it feels like when you go to the dentist for work and your

> face is numb. Anyone else have this too?

>

> THanks a bunch for any feed back,

>

>

>

>

>

>

>

> ---------------------------------

> All-new Yahoo! Mail - Fire up a more powerful email and get

things done faster.

>

[Guest guest]

Hi Sharon,

Thanks for the word of encouragement. I can't believe that I

haven't posted in months and so many of you remember me. You are

all really, really wonderful! Blessings to all of you.

Does the neurontin help with the numbness? I know I am on a pretty

low dose especially compared to my son. I am taking 300mg a day and

he's taking 3300mg. a day.

I just got back into my jammies (it's 2pm here) because my legs are

weak and shaky. My fingertips have gone numb. With my face - my

ears and jaw don't hurt. But my lips, cheeks, and tongue are numb.

I have also gotten lately what feels like a sore throat but when I

go to the doctor it's fine looking but I can't touch my throat. So

my general physician thinks its a nerve problem related to my MS.

You know I've had MS for 15 years it has gotten worse over the past

year and I just feel like I need help figuring out how to deal with

this again.

Thanks for the reply it meant a lot to me! It's good to be back :0)

>

> I am having a really bad time with the fatigue right now. So, are

you affected all the time or does it just come at times during the

day? When it hits it is so overwhelming and it's impossible for me

to stay awake. I don't take anything for it because my fatigue

comes in spells and doesn't affect me year around.

>

> Hot flashes? Yes. But then I am 55 and the right age for it I

guess. When I get hot it feels like I'm going to ignite!

>

> I do have facial numbness including my entire head and neck at

times but it isn't complete numbing like the dentist. I also have

Trigeminal Neuralgia. Do you have pain in your jaw or ear area?

How much Neurontin are you taking? Maybe you aren't taking enough.

>

> I'm glad you wrote, . I've been wondering about you.

>

> hugs)))

>

>

> Sharon (MSersLife Group Owner/Creator)

> It's not easy taking my problems one at a time when they refuse to

get in line. ~Ashleigh Brilliant

>

>

>

> Fatigue and Hot Flashes

>

> Hi Everyone,

> I haven't posted in a long time. I hope everyone is doing well. I

> was wondering if anyone struggles with incredible fatigue? I am on

> Dexedrine to help with it - which is initially does in the morning

> but I just feel like I can't function.

> The other question I have is - does anyone struggle with always

> being HOT or having HoT Flashes? I asked my Ob/Gyn if I was

perhaps

> perimenoupausal and he said no. I have struggled with this for the

> last couple of years and I am 35. Just wondering if it something

> w/MS or MS meds - I am on Betaseron, Dexedrine, Darvocet,

Neurontin

> and a couple of other things. Unfortunately- the meds have

> increased again lately. Sorry, I just need to check in with people

> who understand what I am talking about.

> I also have lost complete feeling in my finger tips and toes. Last

> summer I lost feeling in my face and tongue. It got a little

better

> but now it feels like when you go to the dentist for work and your

> face is numb. Anyone else have this too?

>

> THanks a bunch for any feed back,

>

>

[Guest guest]

Hi . Welcome back! I remember you too, and your son. I'm sorry he has to go through this, but glad you are getting answers. I often slip into "lurk mode". I "de-lurk" from time to time. LOL.

I am also on 300 mg. Neurontin. I just started a few weeks ago. I'm not sure if it's helping or not.

Hope you stick around! Take care, Trista

[Guest guest]

My Dear ,

Look at what all has happened in your life the last 18 months. I think it is very understandable that your health in general would be worse.

I too have missed you and wondered how you were doing. You have been in my special needs prayer list, as well as in the general list. The first list is the one that gets prayers at different times of the day.

Love to you.

HAPPINESS and BUTTERFLIES

Lynn Fatigue and Hot Flashes> > > > Hi Everyone,> > I haven't posted in a long time. I hope everyone is doing > well. I > > was wondering if anyone struggles with incredible fatigue? I > am on > > Dexedrine to help with it - which is initially does in the > morning > > but I just feel like I can't function.> > The other question I have is - does anyone struggle with > always > > being HOT or having HoT Flashes? I asked my Ob/Gyn if I was > perhaps > > perimenoupausal and he said no. I have struggled with this for > the > > last couple of years and I am 35. Just wondering if it > something > > w/MS or MS meds - I am on Betaseron, Dexedrine, Darvocet, > Neurontin > > and a couple of other things. Unfortunately- the meds have > > increased again lately. Sorry, I just need to check in with > people > > who understand what I am talking about.> > I also have lost complete feeling in my finger tips and toes. > Last > > summer I lost feeling in my face and tongue. It got a little > better > > but now it feels like when you go to the dentist for work and > your > > face is numb. Anyone else have this too?> > > > THanks a bunch for any feed back,> > > >> > > > > > May you always find

HAPPINESS and BUTTERFLIES

Lynn

[Guest guest]

Dear :

I have thought about your son so often and wondered what ever happened with him. I'm sorry but I wasn't putting two and two together with your name and the boy I've wondered about. Isn't your son around 8? Have they ruled out Muscular Dystrophy? I have three nephews with adult onset MD. How is he doing now that he's on the medication? Are there further tests to be done?

hugs))

Sharon

Sharon (MSersLife Group Owner/Creator)

It's not easy taking my problems one at a time when they refuse to get in line. ~Ashleigh Brilliant

Re: Fatigue and Hot Flashes

Hi Challis,It's so nice that you remembered my son. Boy, did that get interesting. I think it was last October when I starting talking to the group about his health issues. Then by December we were finishing some testing. Well, to make a long story short. His pediatrician got tired of waiting around for our ped.neuro to get back with results and she had me take him to Loma University Hospital to be admitted. Within 24 hours he was diagnosed with a muscle disease. They don't know which one specifically yet. But they are sure it's not MS. He was hospitalized three times since Jan. They also did a muscle biopsy and nerve biopsy during the second time in the hospital. They did an EMG on him with the electric shocks and then one with a needle that is put into the muscle. That's how they determined he needed the biopsy. They sent everything to the MAYO clinic. Results showed muscle breakdown and patchy

denervation. He's on neurontin, carnitine (they found a carnitine deficiency with him) and topamax. This year has been really, really interesting. I must say though- they had answers faster for him than I have ever had with my MS. About my fatigue - it's pretty constant. There's only a couple hours out of the day that I am not about to fall asleep. Then of course I have trouble sleeping. I just want to feel normal. I have three children and feel that most days I am just hanging on. I feel horrible to be down too much. You know?Thanks again for asking about our son! That really touched me. Feels good to chat with all of you again!> Hi Everyone,> I haven't posted in a long time. I hope everyone is doing well. I > was wondering if anyone struggles with incredible fatigue? I am on > Dexedrine to help with it - which is initially does in the morning > but I just feel like I can't function.> The other question I have is - does anyone struggle with always > being HOT or having HoT Flashes? I asked my Ob/Gyn

if I was perhaps > perimenoupausal and he said no. I have struggled with this for the > last couple of years and I am 35. Just wondering if it something > w/MS or MS meds - I am on Betaseron, Dexedrine, Darvocet, Neurontin > and a couple of other things. Unfortunately- the meds have > increased again lately. Sorry, I just need to check in with people > who understand what I am talking about.> I also have lost complete feeling in my finger tips and toes. Last > summer I lost feeling in my face and tongue. It got a little better > but now it feels like when you go to the dentist for work and your > face is numb. Anyone else have this too?> > THanks a bunch for any feed back,> > > > > > > > ------------ --------- --------- ---> All-new Yahoo! Mail - Fire up a more powerful email and get things done

faster.>

[Guest guest]

Wow, y'all have been through a lot getting your son's dx. I'm so glad to know the answers did come. Are they still testing to find which disease it is, specifically? Must you wait for those answers before you have a good idea of "prognosis", or do you already know? I do understand how you must feel to be so affected by the fatigue. It's a terrible way to try to spend a day and with children it's even worse, I suppose. I know I don't feel like much of an on-hand Mom when the fatigue hits me hard. I'd love for an afternoon nap, on those rare days I might get it lol, to actually help. It really doens't though with the MS fatigue, does it? It would be nice to wake in the morning feeling awake and not feel as if you've not slept in five days within a couple hours. HUGS, Challis Deao

wrote: Hi Challis,It's so nice that you remembered my son. Boy, did that get interesting. I think it was last October when I starting talking to the group about his health issues. Then by December we were finishing some testing. Well, to make a long story short. His pediatrician got tired of waiting around for our ped.neuro to get back with results and she had me take him to Loma University Hospital to be admitted. Within 24 hours he was diagnosed with a muscle disease. They

don't know which one specifically yet. But they are sure it's not MS. He was hospitalized three times since Jan. They also did a muscle biopsy and nerve biopsy during the second time in the hospital. They did an EMG on him with the electric shocks and then one with a needle that is put into the muscle. That's how they determined he needed the biopsy. They sent everything to the MAYO clinic. Results showed muscle breakdown and patchy denervation. He's on neurontin, carnitine (they found a carnitine deficiency with him) and topamax. This year has been really, really interesting. I must say though- they had answers faster for him than I have ever had with my MS. About my fatigue - it's pretty constant. There's only a couple hours out of the day that I am not about to fall asleep. Then of course I have trouble sleeping. I just want to feel normal. I have three children and feel that most days I am just hanging on.

I feel horrible to be down too much. You know?Thanks again for asking about our son! That really touched me. Feels good to chat with all of you again!> Hi Everyone,> I haven't posted in a long time. I hope everyone is doing well. I > was wondering if anyone struggles with incredible fatigue? I am on > Dexedrine to help with it - which is initially does in the morning > but I just feel like I can't function.> The other question I have is - does anyone struggle with always > being HOT or having HoT Flashes? I asked my Ob/Gyn if I was perhaps > perimenoupausal and he said no. I have struggled with this for the > last couple of years and I am 35. Just wondering if it something > w/MS or MS meds - I am on Betaseron, Dexedrine, Darvocet, Neurontin > and a couple of other things. Unfortunately- the meds have > increased again lately. Sorry, I just need to check in with people > who understand what I am talking about.> I also have lost complete feeling in my finger tips and toes. Last > summer I lost feeling in

my face and tongue. It got a little better > but now it feels like when you go to the dentist for work and your > face is numb. Anyone else have this too?> > THanks a bunch for any feed back,> > > > > > > > ---------------------------------> All-new Yahoo! Mail - Fire up a more powerful email and get things done faster.>

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

[Guest guest]

Wow, y'all have been through a lot getting your son's dx. I'm so glad to know the answers did come. Are they still testing to find which disease it is, specifically? Must you wait for those answers before you have a good idea of "prognosis", or do you already know? I do understand how you must feel to be so affected by the fatigue. It's a terrible way to try to spend a day and with children it's even worse, I suppose. I know I don't feel like much of an on-hand Mom when the fatigue hits me hard. I'd love for an afternoon nap, on those rare days I might get it lol, to actually help. It really doens't though with the MS fatigue, does it? It would be nice to wake in the morning feeling awake and not feel as if you've not slept in five days within a couple hours. HUGS, Challis Deao

wrote: Hi Challis,It's so nice that you remembered my son. Boy, did that get interesting. I think it was last October when I starting talking to the group about his health issues. Then by December we were finishing some testing. Well, to make a long story short. His pediatrician got tired of waiting around for our ped.neuro to get back with results and she had me take him to Loma University Hospital to be admitted. Within 24 hours he was diagnosed with a muscle disease. They

don't know which one specifically yet. But they are sure it's not MS. He was hospitalized three times since Jan. They also did a muscle biopsy and nerve biopsy during the second time in the hospital. They did an EMG on him with the electric shocks and then one with a needle that is put into the muscle. That's how they determined he needed the biopsy. They sent everything to the MAYO clinic. Results showed muscle breakdown and patchy denervation. He's on neurontin, carnitine (they found a carnitine deficiency with him) and topamax. This year has been really, really interesting. I must say though- they had answers faster for him than I have ever had with my MS. About my fatigue - it's pretty constant. There's only a couple hours out of the day that I am not about to fall asleep. Then of course I have trouble sleeping. I just want to feel normal. I have three children and feel that most days I am just hanging on.

I feel horrible to be down too much. You know?Thanks again for asking about our son! That really touched me. Feels good to chat with all of you again!> Hi Everyone,> I haven't posted in a long time. I hope everyone is doing well. I > was wondering if anyone struggles with incredible fatigue? I am on > Dexedrine to help with it - which is initially does in the morning > but I just feel like I can't function.> The other question I have is - does anyone struggle with always > being HOT or having HoT Flashes? I asked my Ob/Gyn if I was perhaps > perimenoupausal and he said no. I have struggled with this for the > last couple of years and I am 35. Just wondering if it something > w/MS or MS meds - I am on Betaseron, Dexedrine, Darvocet, Neurontin > and a couple of other things. Unfortunately- the meds have > increased again lately. Sorry, I just need to check in with people > who understand what I am talking about.> I also have lost complete feeling in my finger tips and toes. Last > summer I lost feeling in

my face and tongue. It got a little better > but now it feels like when you go to the dentist for work and your > face is numb. Anyone else have this too?> > THanks a bunch for any feed back,> > > > > > > > ---------------------------------> All-new Yahoo! Mail - Fire up a more powerful email and get things done faster.>

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

[Guest guest]

Hi Challis, Oh how I forgot how good it is to talk with others that know EXACTLY what I am going through. Yes, it is a bummer how no matter how much rest or laying low you do that the fatigue never seems to be eleviated. What do you do to fight the fatigue? Smiles and Hugs to you,Smyelin groovy wrote: Wow, y'all have been through a lot getting your son's dx. I'm so glad to know the answers

did come. Are they still testing to find which disease it is, specifically? Must you wait for those answers before you have a good idea of "prognosis", or do you already know? I do understand how you must feel to be so affected by the fatigue. It's a terrible way to try to spend a day and with children it's even worse, I suppose. I know I don't feel like much of an on-hand Mom when the fatigue hits me hard. I'd love for an afternoon nap, on those rare days I might get it lol, to actually help. It really doens't though with the MS fatigue, does it? It would be nice to wake in the morning feeling awake and not feel as if you've not slept in five days within a couple hours. HUGS, Challis Deao <f8thfulmom> wrote: Hi Challis,It's so nice that you remembered my son. Boy, did that get interesting. I think it was last October when I starting talking to the group about his health issues. Then by December we were finishing some testing. Well, to make a long story short. His pediatrician got tired of waiting around for our ped.neuro to get back with results and she had me take him to Loma University Hospital to be admitted. Within 24 hours he was diagnosed with a muscle disease. They don't know which one specifically yet. But they are sure it's not MS. He was hospitalized three times since Jan. They also did a muscle biopsy and nerve biopsy during the second time in the hospital. They did an EMG on him with the electric shocks and then one with a needle that is put into the muscle. That's how they determined he needed the biopsy. They sent everything to the MAYO

clinic. Results showed muscle breakdown and patchy denervation. He's on neurontin, carnitine (they found a carnitine deficiency with him) and topamax. This year has been really, really interesting. I must say though- they had answers faster for him than I have ever had with my MS. About my fatigue - it's pretty constant. There's only a couple hours out of the day that I am not about to fall asleep. Then of course I have trouble sleeping. I just want to feel normal. I have three children and feel that most days I am just hanging on. I feel horrible to be down too much. You know?Thanks again for asking about our son! That really touched me. Feels good to chat with all of you again!> Hi Everyone,> I haven't posted in a long time. I hope everyone is doing well. I > was wondering if anyone struggles with incredible fatigue? I am on > Dexedrine to help with it - which is initially does in the morning > but I just feel like I can't function.> The other question I have is - does anyone struggle with always > being HOT or having HoT

Flashes? I asked my Ob/Gyn if I was perhaps > perimenoupausal and he said no. I have struggled with this for the > last couple of years and I am 35. Just wondering if it something > w/MS or MS meds - I am on Betaseron, Dexedrine, Darvocet, Neurontin > and a couple of other things. Unfortunately- the meds have > increased again lately. Sorry, I just need to check in with people > who understand what I am talking about.> I also have lost complete feeling in my finger tips and toes. Last > summer I lost feeling in my face and tongue. It got a little better > but now it feels like when you go to the dentist for work and your > face is numb. Anyone else have this too?> > THanks a bunch for any feed back,> > > > > > > > ---------------------------------> All-new Yahoo! Mail - Fire up a more powerful

email and get things done faster.> How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

All-new Yahoo! Mail - Fire up a more powerful email and get things done faster.

[Guest guest]

Hi , I don't know if I do anything for the fatigue. Or, if I do something, if it actually makes a difference. lol I do try to get a good night's sleep, though it isn't so easy most times. lol Not becauce I think a good night's sleep with cure wretched fatigue, but it certainly helps in general. The normal fatigue of lack of sleep only seems to make the other fatigue worse. Compunding two in one making it feel like ten? I try to move about when I feel it starting, but it doesn't do anything. I try to keep up with certain supplements daily, but they don't particularly help. There are days when Maya goes for her nap, and I'm able to go with her, that I have gone and slept for a bit. One day I slept for three hours and I just don't do that! I felt awesome that

evening! It doens't usually happen that way. I drink coffee, but it doesn't help "that" fatigue. I do try to manage things around it, for any little bit that'll help. About this time of day (around Noon) I slow down pretty good. Here lately, it's been by 9 or 10 in the morning. And then once I eat lunch, forget it, I'm done for. lol Do you do anything for yours that seems to help at all? Challis Deao wrote: Hi Challis, Oh how I forgot how good it is to talk with others that know EXACTLY what I am going through. Yes, it is a bummer how no matter how much rest or laying low you do that the fatigue never seems to be eleviated. What do you do to fight the fatigue? Smiles and Hugs to you,Smyelin groovy <smyelingroovy> wrote: Wow, y'all have been through a lot getting your son's dx. I'm so glad to know the answers did come. Are they still testing to find which disease it is, specifically? Must you wait for those answers before you have a good idea of "prognosis", or do you

already know? I do understand how you must feel to be so affected by the fatigue. It's a terrible way to try to spend a day and with children it's even worse, I suppose. I know I don't feel like much of an on-hand Mom when the fatigue hits me hard. I'd love for an afternoon nap, on those rare days I might get it lol, to actually help. It really doens't though with the MS fatigue, does it? It would be nice to wake in the morning feeling awake and not feel as if you've not slept in five days within a couple hours. HUGS, Challis Deao <f8thfulmom> wrote: Hi Challis,It's so nice that you remembered my son. Boy, did that get interesting. I think it was last

October when I starting talking to the group about his health issues. Then by December we were finishing some testing. Well, to make a long story short. His pediatrician got tired of waiting around for our ped.neuro to get back with results and she had me take him to Loma University Hospital to be admitted. Within 24 hours he was diagnosed with a muscle disease. They don't know which one specifically yet. But they are sure it's not MS. He was hospitalized three times since Jan. They also did a muscle biopsy and nerve biopsy during the second time in the hospital. They did an EMG on him with the electric shocks and then one with a needle that is put into the muscle. That's how they determined he needed the biopsy. They sent everything to the MAYO clinic. Results showed muscle breakdown and patchy denervation. He's on neurontin, carnitine (they found a carnitine deficiency with him) and topamax. This year

has been really, really interesting. I must say though- they had answers faster for him than I have ever had with my MS. About my fatigue - it's pretty constant. There's only a couple hours out of the day that I am not about to fall asleep. Then of course I have trouble sleeping. I just want to feel normal. I have three children and feel that most days I am just hanging on. I feel horrible to be down too much. You know?Thanks again for asking about our son! That really touched me. Feels good to chat with all of you again!> Hi Everyone,> I haven't posted in a long time. I hope everyone is doing well. I > was wondering if anyone struggles with incredible fatigue? I am on > Dexedrine to help with it - which is initially does in the morning > but I just feel like I can't function.> The other question I have is - does anyone struggle with always > being HOT or having HoT Flashes? I asked my Ob/Gyn if I was perhaps > perimenoupausal and he said no. I have struggled with this for the > last couple of years and I am 35. Just

wondering if it something > w/MS or MS meds - I am on Betaseron, Dexedrine, Darvocet, Neurontin > and a couple of other things. Unfortunately- the meds have > increased again lately. Sorry, I just need to check in with people > who understand what I am talking about.> I also have lost complete feeling in my finger tips and toes. Last > summer I lost feeling in my face and tongue. It got a little better > but now it feels like when you go to the dentist for work and your > face is numb. Anyone else have this too?> > THanks a bunch for any feed back,> > > > > > > > ---------------------------------> All-new Yahoo! Mail - Fire up a more powerful email and get things done faster.> How low will we go? Check out Yahoo!

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