Re: Tests to help MSA diagnosis - Bill Pilgrim

[Guest guest]

Hi Bill,

I would think that most of these tests could only be ordered by a

neurologist, preferably a movement disorder specialist. Are you able to get

a referral from your GP to see a neurologist?

Regards,

Pam

Re: a bit confused

> > >

> > >

> > > If they were testing for possible MSA, Shy Drager, etc., what type of

> test

> > > would they do? Is a EEG, MRI, better or is a PET, what is the

> difference?

> > > Thanks! Shirley cg to Ralph

> > >

> > >

> > > " I believe that friends are quiet angels who lift us to our feet when

> our

> > > wings have trouble remembering how to fly "

> > >

> > >

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

> > > unsubscribe by sending a blank email to

> > >

> > > shydrager-unsubscribe

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Hi Bill,

I happened across some info on Chronic Fatigue Syndrome and Fibromyalgia

awhile ago and it did mention there can be autonomic dysfunction associated

with these conditions. I will dig it up again. I wonder if you've looked

into these disorders as well: Chronic Inflammatory Demyelinating

Polyneuropathy (CIDP) and Guillain-Barre Syndrome (GBS). I believe there is

pain and fatigue involved with these ones as well.

There are some MSA patients who report pain yes... some report muscle

cramping pain, others have headache and neck pain, others have neuropathy

pain. I'm sure those with pain symptoms will chime in and give more

details.

MSA often starts out with autonomic dysfunction only (especially orthostatic

hypotension - which means low blood pressure when standing) but then the

disease seems to progress to affect other areas of the brain and impair

movement, speech & swallowing abilities. PAF or pure autonomic failure

doesn't usually involve these other movement problems that can afflict MSA

patients but for some people PAF may be their initial diagnosis and later as

more symptoms develop it becomes apparent that they actually are more likely

to have MSA. The only certain way to diagnosis MSA at this time is with

autopsy unfortunately so doctors have to try to put together all the pieces

of the puzzle by observing various symptoms in order to diagnose Possible or

Probable MSA while a person is living.

There is another related disorder called POTS (Postural Orthostatic

Tachycardia Syndrome) that has autonomic problems as well. People with

Parkinson's disease can also have some autonomic dysfunction. Other

disorders that are commonly mistaken for MSA are Progressive Supranuclear

Palsy(PSP), Diffuse Lewy Body Dementia (DLBD)and Corticobasal Ganglionic

Degeneration(CBGD).

Hope this is a start for you in understanding these disorders. Perhaps it

will give you more ideas to ask your doctors about next time you see them.

Pam

Re: Tests to help MSA diagnosis - Bill Pilgrim

> Hello Pam.

> Thanks once again for the reply. I will give it a try and

> see what I can do. Once a person is diagnosed as having CFS or FMS they

ae

> considered as not being the whole dollar, so it will not hurt any more to

> try. It is surprising to me that the symptoms I read about in your site

are

> so similar to my own and possibly many other sufferers diagnosed as CFS

FMS.

> Do your group of people have a lot of pain? I am really confused about

the

> whole thing. Your people talk about PAF and MSA then about Parkinsons and

> some sort of scale. Is Parkinsons a form of MSA? Are there different

types

> of MSA, or is MSA a group of problems, with Parkinsons being one of them?

> I have read some of your emails and it would seem that the

> people with MSA become unable to help them selves after a few years. I've

> had my problems for quite a few years and am still fairly mobile. Unless

I

> told them, nobody I meet casually would know I have any problems. Most of

> my associates keep saying how well I look, even though I am very

overweight

> at 110kg, mainly due to my breathlesness, which comes and goes (but never

> compleatly).

> Even though I am fairly critical of the Medical

Profession,

> my GP is at least able to be talked to and I will take some of the

> information I have gleaned and have a talk to him in two weeks when I see

> him again, for all the injections I am getting.

>

> Regards Bill P.

[Guest guest]

Thanks .

I appreciate your response. I get Pain, Breathing problems

and onset of breathlessnes for no apparent reason, Intermittant problems

swallowing, Severe Fatigue, Brain Fog with severe headaches if I push it too

far, Some Mood swings, Mal-absorption problems, (Currently getting, Iron,

B12, Sustanon, and a couple of other injections on a regular basis), Cramps,

Spasms on trying to move in the morning, Circulation problems, Orthostatic

Hypotension, Lost the use of a few nerves here and there, and if I could

remember probably a few others.

I am not claiming anything in particular (and don't want to

really. Probably the devil you know rather than the one you don't), but am

just looking as up to dat, there is no knowledge of my problem and no

treatment that makes any difference other than pain medication, I'd rather

be without, but can't tolerate not taking. I Know that many problems can

only be diagnosed by exclusion at this stage.

I guess the main reason is that Medical Science is not very

accurate in some areas yet, and it is a bit lonely and a bit frightening and

a lot frustrating sitting and seeing your life go by, when you have waited

for so many years to be able to relax and get a few pleasures out of life.

I guess I am not alone there.

Regards from Bill P.

RE: Tests to help MSA diagnosis - Bill Pilgrim

> Greeting Bill!

>

> And yes, Pam, I will chime in .. off key, as usual!

>

> > There are some MSA patients who report pain yes...

> > some report muscle cramping pain, others have headache

> > and neck pain, others have neuropathy pain.

>

> I have problems with the cramping and neuropathy. Most patients with MSA

do

> not have problems with this. As I understand it, the peripheral

neuropathy

> is most commonly associated with MSA-C (Sporadic OPCA.. or degeneration of

> the cerebellum .. but not related to any family history).

>

> The cramping pain is a common problem among patients struggling with MSA.

>

> The only 'fix' for these is to manage symptoms. Neurontin helps manage

the

> tingling / neuropathic pain. Zanaflex helps me manage the muscle

cramping.

>

> But it is important to remember that pain is not a defining symptom of

MSA.

> So, if you have pain, it does not mean you have MSA. It also does not

rule

> it out.

>

> At least that is how I understand it.

>

>

> Regards,

> =jbf=

>

> B. Fisher

>

>

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