Re: Brain issues

[Guest guest]

Hi,

I can't believe what I just read. I get slightly dizzy from time to time. No

one could figure it out. On top of that I had mitral valve prolapse which was

successfully repaired 10 years ago. Last year my Aorta valve started

leaking. When that happened I started to think that there might be a link with

CMT.

But I never pursued it figuring What can they do about it? If anyone knows

if there is something they can do I will pursue it.

Ben

[Guest guest]

: I've suffered from that very same thing for as long as I can remember.

The VA sent me an automatic blood pressure/pulse device and has asked me to take

my stats x3 daily. By coincidence and just before reading your post, I had an

" episode " as you describe. I immediately took my BP and pulse - it was 102/80

and pulse 56. Just an hour previous it was 118/62 and pulse 62. After

discussing this issue with ALL my docs in the past several months (and mentioned

to doctors over the years), the consensus is that my blood pressure " takes a

dump " thus causing the light headiness/dizzy feeling. And, as you stated in

your description of your events, one needs not be doing anything in particular

for this to occur. Doppler testing is scheduled for me on the 12th of October

to better understand if vascular issues are present that might be the cause and

substance of these events. With the new issue of heart problems just diagnosed,

it is of some concern.

After much discussion with my neurologist, both PCPs, and others in the mix of

my medical care, they all feel it's reasonable to assume there is, more likely

than not, CMT/HNPP underlying cause and effect regarding this anomaly. Bottom

line - ask your physician to work you up for cardio issues and/or vascular

issues. It's well known that CMT, by it's nature and progression, does effect

the supply of nutrients to the muscle - both peripheral and proximal - that can

in turn affect the function of those muscles. By reducing the function of

muscle activity, OTHER issues rear their ugly heads and make it very confusing

to the medical professionals as to what is really happening to us. Remember,

arteries and vessels function with the assistance of small, necessary muscle

tissue to insure the adequate flow of blood throughout our system. When the

nerve no longer is able to " feed " these muscles, these muscles weaken and no

longer function at their assigned capacities.

Think of your body as a machine that is comprised of an electrical system,

hydraulic system, ropes and pulleys, and a frame to hold every thing together.

When one of the systems begins to fail or weakens, it has a direct effect on all

the others. For the life of me I still can't decide which is my battery!

I once saw " specialists " at UCLA Medical Center in Los Angeles back in the '70's

and presented what I described to them as " gray outs " . Not really passing out

but coming really close was the impression I tried to convey to them. After

x-rays of my head, carotid artery Doppler studies, EEG study, and general

physical, they came to the conclusion that I was having petty mall (sp) seizures

and prescribed dilantin. Of course that medicine did absolutely nothing to

alleviate my symptoms and I discontinued taking the med after about a month.

Being young, dumb, and stupid in those days, (now-old, dumb, and stupid) I moved

on and " just lived with it " . It was just another bump in the road of this

disease I'd experienced not knowing then that I had CMT/HNPP. And, as the

expression goes, I just sucked it up and kept on going.

I truly do understand what you are experiencing albeit I don't know the

definitive answer to cause. I can only go by my experience and knowledge I've

gained through research and conversation and testing with my medical care

professionals. I sincerely hope this gives you some hope and direction and I

wish you all the best in your search for an accurate diagnosis.

rQn I

[Guest guest]

I have had the same thing all my life. When I told someone I was always told

it was normal or from being red headed or later smoking. I just thought it was

normal, I wish I could give " normal " to a few mockers.

michael blanek

[Guest guest]

Hi Ron,

Thanks for your reply. Im so sorry about your problems. It's very

interesting though and I will make an appointment with my doc and see

what he/she thinks. I say he/she because I have only recently moved

to this area and haven't as yet registered with a doctor.

But I will get it investigated. I am sure my father had dizzy spells,

but cant be certain.

Many thanks again.

[Guest guest]

,

My folks were all from up in Birmingham. If you have anyone named in your

lineage they could well be the source of the CMT.

By the way I used to have those things happen, when I was a lad in school I

could lay my head on the desk, shut my eyes and really " go places " .

I do not yet have a firm DX, but it is thought to be either Type 1B, HNPP, or

one of the Type 2's. I also have pyrimidal signs.

Hang in there,

Jim Nash in Ohio