Re: Bladder research in CMT

[Guest guest]

Hi Gretchen,

Thank you for the abstract - I happen to know one of the authors, Dr

Dubourg. It deals with something different: my bladder problems (as

well as those of my eyes) are linked with a pyramidal syndrome. Doctors are

still unable to find my CMT type.

Roman

[Guest guest]

Wow Gretchen,

This is so interesting to me. I have had a constant bladder problem

off and on for the past six months. It started with a problem with

constant frequency and pain in my urethra. I had some urine test

which showed that there was a slight bit of blood but the neurologist

assured me that it was just an infection and had nothing to do with

CMT. This is the same neurologist that told me he didn't know much

about CMT and had tried a number of different neurological meds that

i had bad side affects with. I STILL HAVE THE BLADDER PROBLEM OFF AND

ON AND THOUGHT IT WAS JUST THAT MY BLADDER WAS BECOMING WEAK.

I now take some supplements and they are helping. Finally here in Pittsburgh we

have a Dr. who specializes in CMT. I have an appointment with him on the 14th of

this month.

I would like any feed back on how to explain the pain people

experience. I have a hard time describing it. I call them episodes. I

will get a cramp in my hands and legs. Legs are the most painful.

First my foot goes into a spasm, then my calf cramps so intensely. I

get this weird sensation(painful) up the front of my legs like i am

going to become paralyzed. It can last for 15 minutes and sometimes

all night long. I get up, walk it off, lay back down and bam it's

there again. Does anyone else experience this kind of pain. Burning,

cramping paralyzing pain.

I would appreciate any feed back on what to tell the doctor. I'm

afraid he is just going to try to put me on some other neurological

medicine. So far the neurologist had me take a genetic test. The

Athena blood test. It cost $4,000 and he said he didn't find out

which type of CMT I have. Go figure???? I really don't have much

faith in the medical profession right now and don't want to go into

this appointment with a negative attitude.

Any suggestions would be greatly appreciated.

Peace and Love,

Briget

[Guest guest]

Briget,

I too recently had blood in my urine for just a few days that could not be

attributed to anything. And I too have had some disappointing medical advice.

What I am doing is gathering all the information I can find from the

Charcot-Marie-Tooth organization (website), and from the website. Before

visiting a new doctor (a neurologist, rather than my general practitioner), I am

highlighting any pertinent information which relates to experiences I am having.

I am also making notes to help me to remember everything that I want to discuss

with the doctor.

In the past I have minimized symptoms, partially because I didn't understand

them or attribute them to CMT. I also find that my own embarrassment over being

" broken " keeps me from being totally honest. I find myself minimizing my

symptoms as I want to " appear " whole. This has cost me effective medical care

and it is currently costing me SSDI benefit approval (I'm on the 3rd round now

with legal representation).

In the past three months, I have seen my general practitioner, a urologist, a

rhematologist and now I have an appointment with a neurologist. I was diagnosed

12 years ago (at age 49) and my symptoms have developed so slowly that I just

lived with them. From the fatigue I was assuming that I was just being lazy.

It may just have been a blessing that I was turned down for disability initially

as I have become far more rigorous about finding out about the disease and all

the issues that I have that are more than likely attributable to either CMT

and/or fibromyalgia.

I hope that my sharing my errors and omissions will encourage you to do your

research and prepare before discussing your symptoms, possible causes and

solutions with your neurologist.

[Guest guest]

,

Thank you for sharing with me. I too have been to the urologist, my

PCP and two neurologist. I found some very interesting things on the

web site Gretchen replied to Roman. There is a lot there which I have

printed and highlighted to bring to my appointment with me. I am

going to see the specialist with my homework done and my arms full of

information. I just hope he isn't one of those doctors who dismisses

you right away. I have dealt with three of them in Ohio with my

father. They have never heard of CMT and simply dismissed me me

without even reading the information I brought.They just flat out

told me " he doesn't have this, it's from his back problems " . I asked

one Dr. " if you never heard of it then how do you know he doesn't

have it? he did't appreciate that at all. It gets so frustrating.

The more research you do the easier it is for them to be able to help

you if they are responsive to your information.

Did they find any strange proteins in your blood. Just curious

because that is what started my whole diagnosis. I had some bad

proteins in my blood. I have had so many blood test I'm surprised I

can still function!

I'll let you know what happens. Thanks again for sharing. I understand how you

feel about being broken. I am an Art Handler

which means I install entire exhibitions for a museum here in

Pittsburgh. I'm 54 and the work is very, very physical. I'm afraid I

am going to have to turn in my gloves and try and find a job that is

less strenuous. I love my work. But I look at it this way. They

thought I had MS or Lupus. I was happy to get the CMT diagnosis

compared to the other two. At least CMT is slow progressing and isn't

fatal. I consider myself grateful I have is and not something worse.

You are whole, we just have to make minor adjustments to our

lifestyles which we do with age anyway.

Have a great day,

Briget