Re: medications for MSA

[Guest guest]

Dizzy-Dance. My husband also has pain in his legs. Dr has him on Zanaflex

20mg

a day. This is a muscle relaxant. Seems to help the pain. Dr. says it is

from Spastic

muscles.

[Guest guest]

Thanks for the reply . I have tried Zanaflex with no relief,

but recently my Dr. has me taking Flexeril during the day too. It may

be helping me, as I was thinking it was my adding Vit E and B-6 to my

list per day.

Hugs,

Valarie

[Guest guest]

Greetings Valarie!

First a question ... do you have an official diagnosis, or are you searching

for one. The reason I ask is that how you work with your doctor differs,

based on that answer.

If you have a semi-official diagnosis, then most doctors understand the

neuropathic pain is a common problem. In that case, you need to focus on

managing the symptom.

If you do not have a diagnosis, then you need to remind your doctor that

regardless of the eventual diagnosis, you need to manage the symptom.

In either event you need to describe the symptom and wonder if anything can

be done to help alleviate the pain.

But yes, there are several medications that might help. But it depends on

the specific symptom. If the pain is associated with abnormally tight

muscles (often with cramping) then a muscle relaxant is in order. I use

Zanaflex to help with this problem. If the pain is connected with

neuropathy (tingling and burning sensations), then Neurontin is often used.

I use this. But sometimes, it is necessary to use a prescription pain

reliever. I use Ultram. Though I may need to switch this medication, due

to changes in my prescription coverage.

However, I repeat and emphasize it is important to stress the symptom that

needs to be managed. Doctors are generally very good at matching symptoms

to medications. And they may uncover something quite different, for which

the medications listed above are useless.

Regards,

=jbf=

B. Fisher

[Guest guest]

Valarie,

Be sure you talk to your doctor about adding vitamin supplements to your

diet. While I'm sure there is no harm in adding 400 IU of vitamin E there

could be some problems with medicine interaction and the vitamin B6. Always

run it past your doctor.

Take care, Bill Werre

=========================

dizzydancer52 wrote:

> Thanks for the reply . I have tried Zanaflex with no relief,

> but recently my Dr. has me taking Flexeril during the day too. It may

> be helping me, as I was thinking it was my adding Vit E and B-6 to my

> list per day.

> Hugs,

> Valarie

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

[Guest guest]

Greetings to you too ,

I have been given a diagnosis by 3 neuros of dystonia in my left

hand. This 3rd neuro has said there IS more going on with me and is

wanting me to go to another neurologist. I have taken Sinemet, it

made me horribly jumpy and majorly increased my pain, then Baclofen,

Neurontin, gave me nightmares, Zanaflex did nothing, Keppra helped my

sleep and was not as good as Flexeril for me. Nothing has helped my 2

burning legs pain. I've also taken Artane, totally destroyed my

memory. Then I've taken Zonegran and others I can't remember, on my

tenth med right now. I do take a small amount of Klonopin at this

time. I am going crazy living with this leg pain, I have now had for

8 years. I would love to get the right diagnosis and onto a med that

will help me, I realize without the right diagnosis I will not get

the right med. I was just wondering what other meds have been used

for MSA as so many of my symptoms fit into this. I wish they didn't

believe me!! I do have hope hearing the different meds I've heard on

here may eventually give me relief. I do take ultram but doesn't cut

the pain, may take just the edge off only. In the past I think I have

not been LOUD enough telling the Dr.'s about my severe leg pain and I

know it IS my fault. I NEED some kind of relief soon! I NEED a real

diagnosis soon too. I do believe my latest neuro will get me going in

the right direction as he wants me to go onward to another neuro.

I've had the tilt table test which showed the autonmic problems, on

the parasympathetic nervous system side, that I had told the Dr.

previously. It did not show a problem with my heart which the neuro

was glad. Now they'd like to do a spinal tap which I am afraid of.

I've had 4 MRI's to rule out MS and 2 EMG's. Thanks so much for

taking the time to email a response to me, I DO appreciate it VERY

much!!! I guess I was hoping there were more meds out there I had not

had before. Again thanks .

Hugs,

Valarie

[Guest guest]

Greetings to you too ,

I have been given a diagnosis by 3 neuros of dystonia in my left

hand. This 3rd neuro has said there IS more going on with me and is

wanting me to go to another neurologist. I have taken Sinemet, it

made me horribly jumpy and majorly increased my pain, then Baclofen,

Neurontin, gave me nightmares, Zanaflex did nothing, Keppra helped my

sleep and was not as good as Flexeril for me. Nothing has helped my 2

burning legs pain. I've also taken Artane, totally destroyed my

memory. Then I've taken Zonegran and others I can't remember, on my

tenth med right now. I do take a small amount of Klonopin at this

time. I am going crazy living with this leg pain, I have now had for

8 years. I would love to get the right diagnosis and onto a med that

will help me, I realize without the right diagnosis I will not get

the right med. I was just wondering what other meds have been used

for MSA as so many of my symptoms fit into this. I wish they didn't

believe me!! I do have hope hearing the different meds I've heard on

here may eventually give me relief. I do take ultram but doesn't cut

the pain, may take just the edge off only. In the past I think I have

not been LOUD enough telling the Dr.'s about my severe leg pain and I

know it IS my fault. I NEED some kind of relief soon! I NEED a real

diagnosis soon too. I do believe my latest neuro will get me going in

the right direction as he wants me to go onward to another neuro.

I've had the tilt table test which showed the autonmic problems, on

the parasympathetic nervous system side, that I had told the Dr.

previously. It did not show a problem with my heart which the neuro

was glad. Now they'd like to do a spinal tap which I am afraid of.

I've had 4 MRI's to rule out MS and 2 EMG's. Thanks so much for

taking the time to email a response to me, I DO appreciate it VERY

much!!! I guess I was hoping there were more meds out there I had not

had before. Again thanks .

Hugs,

Valarie

[Guest guest]

Greetings to you too ,

I have been given a diagnosis by 3 neuros of dystonia in my left

hand. This 3rd neuro has said there IS more going on with me and is

wanting me to go to another neurologist. I have taken Sinemet, it

made me horribly jumpy and majorly increased my pain, then Baclofen,

Neurontin, gave me nightmares, Zanaflex did nothing, Keppra helped my

sleep and was not as good as Flexeril for me. Nothing has helped my 2

burning legs pain. I've also taken Artane, totally destroyed my

memory. Then I've taken Zonegran and others I can't remember, on my

tenth med right now. I do take a small amount of Klonopin at this

time. I am going crazy living with this leg pain, I have now had for

8 years. I would love to get the right diagnosis and onto a med that

will help me, I realize without the right diagnosis I will not get

the right med. I was just wondering what other meds have been used

for MSA as so many of my symptoms fit into this. I wish they didn't

believe me!! I do have hope hearing the different meds I've heard on

here may eventually give me relief. I do take ultram but doesn't cut

the pain, may take just the edge off only. In the past I think I have

not been LOUD enough telling the Dr.'s about my severe leg pain and I

know it IS my fault. I NEED some kind of relief soon! I NEED a real

diagnosis soon too. I do believe my latest neuro will get me going in

the right direction as he wants me to go onward to another neuro.

I've had the tilt table test which showed the autonmic problems, on

the parasympathetic nervous system side, that I had told the Dr.

previously. It did not show a problem with my heart which the neuro

was glad. Now they'd like to do a spinal tap which I am afraid of.

I've had 4 MRI's to rule out MS and 2 EMG's. Thanks so much for

taking the time to email a response to me, I DO appreciate it VERY

much!!! I guess I was hoping there were more meds out there I had not

had before. Again thanks .

Hugs,

Valarie

[Guest guest]

Bill,

You are right I should have spoke with my Dr. before adding the

vitamins. I see him this Thursday and they always go over all meds

and all vitamins. That was stupid on my part.

Hugs,

Valarie

[Guest guest]

Greetings again, Valarie!

Hmm.. Sounds as if you have tried lots of medications. I am very fortunate

that I experience minimal side effects from most meds.

Believe me, I *DO* understand about an inconclusive diagnosis. My

neurologist is only willing to say that I appear to have " primary cerebellar

degeneration " . Duh! But in all fairness to him, if none of the tests show

anything else, we can speculate and note that I probably have Sporadic OPCA,

which means I probably have MSA. But it's just that at this point --

speculation.

Now, I could go onto some of the other tests, but I am not sure that it

would show all that much at this time. Even if it does show autonomic

problems .. what difference does it make, other than to be certain I manage

the symptoms! And we are doing that now. Fortunately, I have cerebellar

problems predominately. So, autonomic problems are not as severe right now.

Besides, it costs money that I don't like to spend, when the answer is so

inconclusive.

So, yes. I do understand.

As to the pain, PLEASE be certain you let your doctor know that the pain is

quite severe and that Ultram is not doing the job. Unfortunately, I am now

finding the same thing to be the case. As you note, it just takes the edge

off the pain. Not fun. This has been a new and unpleasant turn of events

for me.

As is your case, I will see my neurologist fairly soon, and will discuss

this at that time. As I noted in another email, my insurance company

changed their prescription drug coverage. This gives me a starting point (a

good excuse) to discuss this with my neurologist. I am not sure what I

need. That's on the doctor's end. I know that I have a need. It is upto

me to make certain that need is understood.

While a spinal tap is not a picnic, I understand that it is much better than

many other procedures. So, hopefully you will have a good experience with

it. Sometimes, the spinal tap can be used to help uncover antibodies for

various neurons .. which would make your case an autoimmune problem, such as

MS. There are other autoimmune problems, such as lupus, which can cause

some of these problems. But mostly, most doctors want to rule out options

to make certain they don't overlook a possible therapy.

The good news is that you found a neurologist that is listening and

recognizes he/she doesn't have all the answers. That is something I try to

find. My neurologist recognized he did not understand the problems I was

having with my eyes. He sent me to a neuro-ophthamologist, who did LOTS of

testing to eliminate other things, then performed some simple tests which

showed clear problems with the cerebellum. THAT was the most important

referral I've ever had. It confirmed beyond a shadow of a doubt that it is

real ... as much as I don't want it to be.

So, hopefully between your new neurologist and this group you will be able

to learn to live with and manage your condition .. regardless of the final

diagnosis.

Regards,

=jbf=

B. Fisher

[Guest guest]

Greetings again, Valarie!

Hmm.. Sounds as if you have tried lots of medications. I am very fortunate

that I experience minimal side effects from most meds.

Believe me, I *DO* understand about an inconclusive diagnosis. My

neurologist is only willing to say that I appear to have " primary cerebellar

degeneration " . Duh! But in all fairness to him, if none of the tests show

anything else, we can speculate and note that I probably have Sporadic OPCA,

which means I probably have MSA. But it's just that at this point --

speculation.

Now, I could go onto some of the other tests, but I am not sure that it

would show all that much at this time. Even if it does show autonomic

problems .. what difference does it make, other than to be certain I manage

the symptoms! And we are doing that now. Fortunately, I have cerebellar

problems predominately. So, autonomic problems are not as severe right now.

Besides, it costs money that I don't like to spend, when the answer is so

inconclusive.

So, yes. I do understand.

As to the pain, PLEASE be certain you let your doctor know that the pain is

quite severe and that Ultram is not doing the job. Unfortunately, I am now

finding the same thing to be the case. As you note, it just takes the edge

off the pain. Not fun. This has been a new and unpleasant turn of events

for me.

As is your case, I will see my neurologist fairly soon, and will discuss

this at that time. As I noted in another email, my insurance company

changed their prescription drug coverage. This gives me a starting point (a

good excuse) to discuss this with my neurologist. I am not sure what I

need. That's on the doctor's end. I know that I have a need. It is upto

me to make certain that need is understood.

While a spinal tap is not a picnic, I understand that it is much better than

many other procedures. So, hopefully you will have a good experience with

it. Sometimes, the spinal tap can be used to help uncover antibodies for

various neurons .. which would make your case an autoimmune problem, such as

MS. There are other autoimmune problems, such as lupus, which can cause

some of these problems. But mostly, most doctors want to rule out options

to make certain they don't overlook a possible therapy.

The good news is that you found a neurologist that is listening and

recognizes he/she doesn't have all the answers. That is something I try to

find. My neurologist recognized he did not understand the problems I was

having with my eyes. He sent me to a neuro-ophthamologist, who did LOTS of

testing to eliminate other things, then performed some simple tests which

showed clear problems with the cerebellum. THAT was the most important

referral I've ever had. It confirmed beyond a shadow of a doubt that it is

real ... as much as I don't want it to be.

So, hopefully between your new neurologist and this group you will be able

to learn to live with and manage your condition .. regardless of the final

diagnosis.

Regards,

=jbf=

B. Fisher

[Guest guest]

, thanks so much for the email,

I understand that there is no definite test for MSA which makes

it all so hard to figure out. All I have definitely heard from all 3

neuros is dystonia which through my research is on the MSA list as

well as autonmic problems. You all have been SO great here for me you

just don't know!!! I am like you I hate to keep having tests and

tests and shows nothing really pertinent. I saw my opthamoligist

years ago and he could see the nystagmus and he told me I need to go

to a neuro. My PCP didn't listen to me at all probably because of my

HMO, needless to say I have a new PCP and not on an HMO. I am also on

SSD. I still work 2 days a week for distraction as Aletta said, and

it does help. Also my Rx plan with Target is GREAT, so that too gives

me momentum to stay. Plus I get positive strokes at work, I am one of

the switchboard operators and they call me " Queen of the operators "

for the way I can handle calls to help the people on the floor. I

feel alot of my problems are NOT screaming enough about my condition,

BUT last visit to neuro he said, " how are you today'? when he came

in, " I said fine " , then started crying and said, " NO, I am not fine I

am in MUCH pain " . He sat down and went through ALL my charts and test

and really listened and looked deeply. It was this time he said

something else IS going on with me and he wishes to send me to

someone else. I am not at the place to do something to myself and if

I should ever get there I would go for help!! My greatest joys right

now are, a beautiful 2 yo grandaughter and a 4 mo old grandson by my

daughter, and they only live 1 mile from me and I know not everyone

is that lucky. They bring me great joy and happiness. I can't carry

them as I have fallen 19 times now but she is starting to understand

that. I am fortunate to have found a neuro that is willing to send me

on if he cannot figure it out as he is the 3rd one to tell me they

are baffled but 2nd one didn't want to let me go but I went!! My

biggest hopes were that there are still meds I've never tried that

might be able to help me. So please remember me in your prayers!

Sweet Anne also told me to keep pushing and I will, but the problem

with that is my family and friends don't believe how much pain I've

been in when I keep going, but I refuse to quit. I am 52 and like I

said I've have pain for 8 yrs. I am VERY anxious to get some

relief!!! I need all of you guys on here, it helps so much to be able

to talk with other with similiar problems. I don't care what my

diagnosis is, just get me some relief from the pain. Sorry this

is a long one again but, many thanks to you!!

Hugs, Valarie

[Guest guest]

Greetings Valarie!

My apologies for my delay in returning your email. As this thing has

progressed, I've discovered (as Heinlein likes to quote) " TANSTAFL - There

Ain't No Such Thing As a Free Lunch! " Bummer. But I am now paying for the

Christmas holiday.

How am I paying. Well, I feel generally unwell, headaches, and LOTS of

neuropathic pain. Lots of muscle fascilations and cramping. I have

increased my medication to help get me over this, but " Bummer! "

Oh well. Yes, I understand about pain. It is invisible. But it is

devastating. I wish you well in your search. You may also want to consider

several different treatment options to help deal with neuropathic pain.

Some may make no difference. But you might find one that will help.

First, you might want to consider accupuncture. There is enough evidence to

show that it does help. It's no cure, but if it can help you manage the

pain, so much the better.

Second, you might want to try biofeedback to help control how you handle

pain. Again, we are talking about pain management.

Third, you may want to try hypnosis (check with your insurance company

first). The intent is to help your brain deal with pain ... rather than

letting it rule your life.

Fourth, prayer and meditation can offer some relief.

Fifth, using a pet or stuffed animal to provide a way to pet another can be

very helpful in managing pain. It doesn't remove the pain, just helps

refocus you .. and there is some endorphin release with petting an animal.

My dog almost always knows when I am in lots of pain. He comes and wants to

be petted more on my bad days than on other days.

Sixth, you may need to see a specialist to help with pain management.

Though most doctors and patients know about medication, there are plenty of

other options.

Finally, you need to recognize pain impacts you as very few other things

can. It is real challenge to not let change you as a person. It does

change me. I get very short tempered. I find I do not want to go out into

the world. It leads to depression.

Oh well. I'll tackle as much as I can in emails and such before I give out

for the day.

Best wishes on your efforts.

Regards,

=jbf=

B. Fisher