Specific Dignosis AND Coping With Symptoms

[Guest guest]

Hello List! I hope that someone will comment on this stuff, but I

have been suprized that so little has been said about this so far.

It seems to me that BOTH a specific (and correct) diagnosis AND

general advice about coping with symptoms are needed.

For a disease such as MSA, the insidious onset of symptoms that could

be due to many common things (including normal aging) is distressing,

and making a correct diagnosis could provide a lot of peace of mind

as well as protect you from unnecessary, dangerous, costly, time-

consuming tests and trials of drugs. Or delay of treatment for a

curable cause such as Chiari Malformation. I found it quite

discouraging that the first major paper (the July 2002 article in the

Journal of Neurology from the Japanese group, about MRI) to appear

since the `consensus statement' on diagnostic criteria for

MSA appeared five years ago increased the number of kinds of MSA from

two to three! Can't any of the expert doctors say anything

helpful (even informally) about symptoms and types of MSA? And what

about psychological symptoms as well as physical symptoms – doesn't

the brain do both? The " neuropsychology " link on the PSPinformation

site sounded awfully familiar to me, and the proportion of MSA-

sufferers on antidepressant pills seems remarkably high to me.

And the things that we deal with in everyday life should be designed

in such a way that they are easy to use for everyone, not just those

of us with a disability. (What ever happened to the old concept of

" universal design " ? Is cost being such a tyrant that even so

inexpensive a thing is ruled out?) But it does make a difference if

your limitation is lack of strength, or lack of tolerance for all

types of physical activity, or lousy coordination, or whatever.

General accounts about swallowing or bowels are helpful, but more

specific accounts in addition about that problem in MSA would be even

more helpful.

But all quibbles aside, this list and Pam Bower's efforts (and

Werre and 'Charmayne' and Fisher and…) have been so

helpfulto me, that I just want to take the opportunity to express my

appreciation. And to say that I'm not being cute about my

identity; it just took a bit of effort to get into Yahoo and once it

worked I wasn't inclined to mess with it. Is that apathy?

Depression?

- Menard

[Guest guest]

Hi ,

I'm not really sure who you are directing your comments to. I don't think

anyone on this forum would disagree that a correct and timely diagnosis is

what the medical profession should be working towards. If someone has

something treatable like a vitamin B-12 deficiency for instance, then

hopefully that would be one of the first things a doctor would test for when

someone presents with neurological symptoms.

As far as the consensus statement on MSA, you are quite correct. Last time

around the experts agreed that there were really only 2 separate types:

1. MSA-C -> cerebellar type, also called sporadic Olivopontocerebellar

atrophy (OPCA) 20% of MSA cases

2. MSA-P -> parkinson type, also called Striatonigral Degeneration (SND) -

80% of MSA cases

In addition, they decided that autonomic and/or urinary symptoms were

included under both MSA-C and MSA-P so the term Shy-Drager Syndrome(SDS)

also called MSA-A -> autonomic type) was decided to be dropped. This page

does a really good job of summarizing the TWO different types:

http://www.cmdg.org/Movement_/Parkinsons_Plus/MSA/msa.htm

Prior to that, the previous consensus statement talked about 3 types:

OPCA (MSA-C)

SND (MSA-P)

SDS (MSA-A)

Many doctors still talk about the three types -> OPCA, SND and SDS, that's

just because they haven't read or are slow to adopt the new consensus

statement guidelines. I'm not sure which Japanese paper you are referring

to or if any of the Japanese group were on the MSA consensus committee. If

they weren't then that explains their use of the older terminology.

I know at the patient conferences that Don Summers and his group organize,

discussions of symptoms and how to cope with them is always a major part of

the weekend. You must remember however that there is a huge overlap of

symptoms between other disorders like PSP, CBGD, LBD, ALS, PAF, POTS,

Parkinson's, Alzheimer's, MS, Hereditary ataxia... the list could go on and

on. The experts still tell us that for many of these disorders the only way

to know for sure what the person had is to wait until autopsy. So then with

misdiagnosed people in the mix of living patients you can certainly see

where there would be a wide range of symptoms. In addition to that, even

when two people are known to have had MSA for certain, their symptoms while

living would not have been exactly the same or progressed at the same rate.

Exactly which parts of the brain die and at what rate is not constant in MSA

from person to person.

I don't know if this helped but it's my 2 cents for the day.

Take care,

Pam

[Guest guest]

Greetings !

Let me provide some of my experience. It might help clarify why a clear

diagnosis is not always possible.

Several years ago, I started to develop a slight tremor. This after LOTS of

problems with sleep. Had the sleep studies done, showing my BiPAP was

properly adjusted. Started getting dizzy. Had some problems with really

ODD edema. My eyes and face and other places would swell. I now think I

was allergic to a new detergent my wife was using. My wife no longer uses

it. But at the time, all of the symptoms were strange, I was having more

and more problems with vision, etc.

I decided it was time to see a neurologist. The first one ordered lots of

tests. (MRIs, blood tests, blood sugar tests, etc. Most through my

Internist. Continuity is good). She decided it was just Anxiety / Stress.

What a hoot! I knew that was bogus! Why? My company pays me to help calm

customers that are facing business make/break problems. For example, some

of these customers are banks that want to avoid the penalties for failing to

do a funds transfer for $5,000,000,000 or more. Just a fine of 1% would be

VERY noticable. I stay calm, and really am calm. My wife sometimes worries

I am not enjoying myself. I just don't get very excited one way or the

other. (Unless of course I am fighting with my own computer. The air

sometimes turns quite blue! :-)

No, anxiety was not the answer. She refused to listen.

I decided it was time for another opinion. I solicited input from others in

my area. I found a practise and a doctor that I liked. He decided to check

for some of the common hereditary SpinoCerebellar Ataxias (SCAs). Nope.

Another full set of MRIs. This time even with some 'dyes' to try to reveal

any scarring. Wanted to eliminate MS. Nope. Everything normal. Even

repeated some of the blood work. BUT (and this is one reason I really like

my neurologist), he simply asked for copies of reports for my Internist to

avoid repeat tests.

All of it came back normal. But it was clear that my symptoms were

increasing and were very consistent. He was convinced it was not anxiety.

The symptoms were too diverse. And even if I wanted to, some of them would

not result from anxiety. Like my eye problems.

Remember, I am legally blind in my right (dominant) eye. So some eye

problems are pretty normal. BUT he kept noticing unusual behavior of my

eyes. So, off I went to a neuro-ophthlomologist. That was the best money I

ever spent. LOTS of tests on my eyes. Some I never even thought about.

(Remember, I've had serious vision problems all my life. I've gone through

a lot of visual tests). It was fun. Until I went on the last stop of the

day. The consult with the neuro-ophthlamologist. He went through the

normal tests, assured himself no one missed anything obvious, and then

specifically tested my cerebellar control of my eyes. WOW! Even I could

tell something was not right.

So, I got a diagnosis right there and then. Cerebellar degeneration. My

neurologist had discussed this as a possibility. This just made it

definite. It's little things we don't think about that this exam found. I

can not keep my eyes still when I look up or left. It's REALLY bad. But

then I don't look that way. Just because it doesn't work.

So, I went back to my neurologist to review the situation. I also

researched possibities. I continued to have *really* strange symptoms. My

kids started to complain that iris in one eye would be wide open with the

iris in the other closed. Or they would both remain very closed down after

walking in from outside. And stay that way for more than 30 minutes. Or it

was the sweating on one side only. Or not at all. Lots of odd things. It

got me looking into options.

Here's the reason I did all that background:

When I discussed this with my neurologist, he noted that yes, I seem to have

Sporadic OPCA. Yes, I most likely have some autonomic problems. But those

were not consistent. Not yet. He noted I might have Shy-Drager. But

frankly, it was too early to tell. The symptoms would need to become more

pronounced. He warned me they would in time. But until then, some of the

clinical features were not as pronounced as he would like to even say

Possible MSA, though he admits it's the most likely diagnosis.

But it might just as well be just plain Sporadic OPCA. (Not as likely). It

might be an odd infection. The list is much longer than any of us wants to

admit. Could it be Chiari? We talked about it. (He is very patient and

helpful). But my symptoms do not seem to be consistent with Chiari. Could

I insist on the surgery anyway? Probably. But why? If it won't fix

anything, why spend the time and money. When my car breaks, I take it to my

mechanic. If he tells me it is the starter, I don't ask him to change a

seat inside the car, unless it really needs it. It is a waste of money that

I need to devote to my family. Could I eliminate Chiari with detailed

exams? Sure, but an indebted doctor is just as likely to push for unneeded

surgery.

So, I try to be an intelligent, descriminating healthcare consumer. And

that sometimes means saying " No! " , if I think the approach won't work.

Sometimes I come back and say " Let's try it " . But I always try to avoid

tests and surgeries and medications unless I feel it is necessary. Some

doctors will be honest and say " It's not warranted " . Too many won't.

What to do until this progresses? Well, there are, at this point, no

differential tests. The only thing that I can do is to insist that my

doctor aggressively manage my symptoms. Not sleeping well? Let's see if

any medication might help. Problems with concentration? Wellbutrin does

help. Problems with cramping and stiffness? Try Zanaflex? Don't forget

walking and stretching and range of movement. Talk with a physical

therapist to get advice on balance and that physical activity. Problems

with tingling? Try Neurontin. Having problmes with concentration? Don't

increase Neurontin. That would only make it worse.

It is a balancing act. A hard one. But one I *must* manage and guide.

It's *my* butt on the line. And the welfare of my family.

Sure a definite diagnosis would be nice. Until then I just explain I

definitely have Sporadic OPCA and possibly MSA. But mostly I tell 'em that

it's just a brain I borrowed from Abby someone. I think it was Abby Normal.

(If you can't guess, I LOVE the movie Young enstein. :^) If they

really are concerned I explain the details. I am upfront and honest. I try

to accept and try to help others do the same.

Sorry to make a short answer long! But I too wish for more clarity. But I

am getting used to the idea the symptoms are most important. For example,

my neurologist informed me that when I am ready to go onto LTD he could

easily get approval for it. I just happen to enjoy my job and since I work

from home, it's not a problem now.

Anyway, it's my two cents based on my own views and experiences. Hope it

helps.

Regards,

=jbf=

B. Fisher