Re: New Doctor nightmare story

[Guest guest]

In a message dated 29/10/00 04:32:07 p.m. Pacific Standard Time,

pipesrd@... writes:

<< He

also wants me to get a nerve conduction study to find out where the

numbness is coming from, CMT or Diabetes. Never heard of such a

thing.

Thanks for listening!

Dawn >>

Let him get another ginny pig. If he thinks CMT doesn't cause pain or

tremors. I would hate to see how this guy does an Nerve conduction test. OUCH

[Guest guest]

In a message dated 10/29/2000 6:32:13 PM Central Standard Time,

pipesrd@... writes:

> Has anyone else been exposed to such stupidity in the neurology

> field. I feel like I am in the twilight zone with no way out. He

> also wants me to get a nerve conduction study to find out where the

> numbness is coming from, CMT or Diabetes. Never heard of such a

> thing.

>

> Thanks for listening!

> Dawn

>

Get a new doctor pronto! CMT is painful to quite a number of us. C

[Guest guest]

Hi Dawn and all,

I also had severe tremors, which is now under control with 400 milligrams of

propranolol per day. I have seen many different neurologists, some have said

the same thing to me, that CMT does not cause tremors. I was so frustrated

until finally, eight years ago, a neurologist who is now the only one I see,

told me that I have Roussy-Levy type CMT which does cause tremoring. I knew

that I was not crazy after all! Though I still get tremors, they are not as

severe as they used to be...I have tremors of my hands and head. When I am

stressed they become much worse. I also have had the electrical sparks type

of pain, but only in severely cold temperatures, it seems. I have not had

that pain for about two years now...for some unexplained reason it just

stopped. But when the pain in my legs and feet subsided, the CMT progressed

so rapidly in the next year or so. I use a wheelchair now when I go out...in

my experience there was a trade off, I suppose...when the pain had subsided,

I could not walk as I used to. Maybe it is true about the electrical sparks

type of pain being caused by nerves dying off...it makes sense to me.

Kathy in Brooklyn

[Guest guest]

-----Original Message-----

From: C1520@... <C1520@...>

egroups <egroups>

Date: Sunday, October 29, 2000 10:01 PM

Subject: Re: [] New Doctor nightmare story

>In a message dated 10/29/2000 6:32:13 PM Central Standard Time,

>pipesrd@... writes:

>

>

>> Has anyone else been exposed to such stupidity in the neurology

>> field. I feel like I am in the twilight zone with no way out. He

>> also wants me to get a nerve conduction study to find out where the

>> numbness is coming from, CMT or Diabetes. Never heard of such a

>> thing.

>>

>> Thanks for listening!

>> Dawn

>>

>

>Get a new doctor pronto! CMT is painful to quite a number of us. C

>

>

>>>My neuro said the same thing and I printed the study on CMT and pain and

sent it to him! The next visit he was better informed about CMT!! ~>Becky

M.

[Guest guest]

In a message dated 10/29/2000 11:19:01 PM Eastern Standard Time,

C1520@... writes:

<< Has anyone else been exposed to such stupidity in the neurology

> field. I feel like I am in the twilight zone with no way out. He

> also wants me to get a nerve conduction study to find out where the

> numbness is coming from, CMT or Diabetes. Never heard of such a

> thing.

>

> Thanks for listening!

> Dawn

>

Get a new doctor pronto! CMT is painful to quite a number of us. C

-------------------------- eGroups Sponsor -------------------------~-~>

>>

I was told basically the same thing once. I've had tremors since grade

school. Finally when I went to MDA, doctor told me it is ROUSSY LEVY, CMT

with tremors.

[Guest guest]

Maybe it is true about the electrical sparks

type of pain being caused by nerves dying off...it makes sense to me.

Kathy in Brooklyn

I agree, everytime I have an electrical jolt, in a short time, I end up

being numb in that area. The electrical jolt appears to me to be an

overload, like what happens when you have a real fine wire and you apply too

much electrical current to it, gets real hot and then breaks down.

Jim E

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[Guest guest]

I don't remember where (I think in the CMT facts series from the

CMTA), but I did read once that about 40% of people

with CMT have tremor. It's kind of hard to have confidence in

doctors who seem to know less than we do.