Definitions of the Week and an opionion

[Guest guest]

Don't mean to vent my frustration here but where else can I? How many of us

have been told that we have a mental problem instead of a

physical/medical/neurological problem first or somewhere along this

journey?.... How long did you have to live with that tag before a dx of MSA,

OPCA, etc. was reached?

Those previous diagnostic opinions don't leave our medical records and may

bias someone into coming to the conclusion of the person having a

Somatoform disorder (Somatoform disorders: A group of psychiatric disorders

characterized by physical symptoms that suggest but are not fully explained

by a physical disorder and that cause significant distress or interfere with

social, occupational, or other functioning).

or Somatization disorder(A chronic, severe psychiatric disorder

characterized by many recurring clinically significant physical complaints

(including pain and GI, sexual, and neurologic symptoms) that cannot be

explained fully by a physical disorder).

Or Malengering (Definition: The deliberate exaggeration of psychological

and/or physical cmplaints for purposes of tangible gain ie: attention)

or Hypochondriasis (Definition: When a patient remains preoccupied with the

fear that they have a serious medical illness despite the fact that medical

evaluation has ruled out such an illness. Although the belief is not of

delusional intensity, attempts at reassurance fail to convense the person

otherwise). instead of MSA?

These are only some of the battles that we face in trying to find an answer

to our physical problems. Doctors ARE trained to identify those disorders.

Our PD+ symptoms don't fit the " textbook " from medical school from which our

doctors were taught. That is why we seek out " Movement disorder

specialists. " Sometimes, even that isn't enough. I have had at least 3

neuro's tell me, " In my entire years of practice, you are the first person

that I have ever met with this disease. " How can you get funding or

attention when you have to first explain and provide proof written on their

level...scholarly journals.... to get them to learn how to treat you in the

first place? To get them to believe that you REALLY do have something wrong

with you?

I take my hat off to the centers of excellence that deal with this disease

and the doctors who have gone past the learning of their medical education

to learn how to help those of us with OPCA, MSA, etc. and to research

actively for finding a cause and then a cure. I for one do not wish this

disease on anyone...even the famous.... it hurts too bad to want anyone else

to have to experience it.

Don't get me wrong... I do understand your point.... but what a shame that

we would even have to think of such a thing. I don't have any answers, just

putting my two cents worth of frustration in.

Hugs,

Deborah

Jim,

You know, I have been having the same thoughts. ALS gets much more

attention, and I just read that about 30,000 in the US have ALS -- the

estimate for MSA is 25,000 to 100,000. At the Boston conference we learned

that 20% of patients with Parkinsonism (not Parkinson's disease) actually

have MSA, although many are misdiagnosed as having Parkinson's disease or

are still seeking diagnosis.

I have two thoughts on this dilemma. First, kids born with rare disorders

are much more sympathetic than adults who develop disorders later in life.

This is especially true of kids who look normal, like the bubble-boy kid.

Second, no one famous has had MSA. Look at the attention Dudley

brought to PSP, J. Fox to Parkinson's and Lou Gerhig to ALS. I

certainly don't wish this disease on anyone, but if someone famous happens

to get it would be a boon to name recognition and probably to research.

Carol & Rob

Lexington, MA

Stem Cell research

I keep hearing that MSA is so rare, as a reason for the lack of research,

funds, etc. But surely the " bubble boy disease " is more rare than MSA!

Anyway it looks like someone somewhere is making progress with stem cells.

This article was in our newspaper yesterday.

Jim

------------------------------------------------------------------------

Posted on Fri, Jun. 28, 2002

New gene restores immune system

By PAUL RECER

The Associated Press

WASHINGTON - A single injection of genetically modified stem cells

is all it took to cure two children of a complex form of an inherited immune

system disorder often referred to as the " bubble boy disease, " researchers

report.

An experimental technique that altered genes in bone marrow stem

cells restored the immune systems of the children, researchers from Italy

and Israel reported in the journal Science. The children were born with what

experts said was the most complex form of severe combined immunodeficiency

disorder, or SCID.

" Both children have been cured, but ... both will be closely

followed to see how it develops in the future, " said Grazia Roncarolo

of the San Raffaele Telethon Institute for Gene Therapy in Milan, Italy.

The children, who were 7 months and 2 1/2 years old when the

therapy began, were released with healthy, functioning immune systems 15

months to 24 months ago, Roncarolo said.

Their form of SCID was caused by a gene flaw that blocks production

of an enzyme called ADA, essential to the body's production of

disease-fighting immune cells.

The treatment consisted of removing stem cells from the bone marrow

of each patient, inserting a normal gene for ADA into the stem cells and

injecting the new cells into the patients. A chemotherapy drug was used to

encourage the migration of the modified cells back to the bone marrow.

The children's bone marrow soon began producing normal

disease-fighting blood cells. Within months, their immune systems overcame

common childhood infections that had not responded to treatment.

French researchers an-nounced in April that they had corrected

genetic flaws in the immune systems of five boys who had X-linked SCID, the

most common form of the immune system disorder.

ONLINE: Science: www.sciencemag.org

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[Guest guest]

Dear Deborah:

I have read your note several times and I think I must say one thing.

You are right; doctors do tend to say that anything they don't understand

must be psychological, and that is unfair. However, as a retired

psychotherapist, I need to put in my two cents. One of the most helpful

things for both Ken and me over the years was to play a self-hypnotic tape

for relieving stress and anxiety as well as pain when we went to bed. He

always said he never heard the end of it, but he knew it was the reason he

always slept so well. I have seen Hypnotherapists (better than I was) help

people have surgery without anesthetics and without bleeding. I do not fully

understand how this can be, but I have seen it. The first Neurologist we went

to had a Psychologist, an Acupuncturist, and a Biofeedback specialist to help

her in her office. She used acupuncture herself when she sprained her ankle.

She is the one who helped us get Selegiline from Europe before it was

available here, and she was a superb diagnostician, but she recognized that

there is a place in medicine for treatments other than just physical. We

never would have left her if she were still in this area. So, although I do

not think it is fair of doctors to call what they do not understand mental, I

think there is a big place for psychological help in the medical field,

especially the Neurological field since both Psychology and Neurology deal

with the brain.

I pray that you and will find the Serenity you are looking for

and that your love for each other will guide you.

Hugs, Barbara