You have CMT ohhh sorry we can't help you........Hot Potato.........

[Guest guest]

I seem to be getting no where with doctors. 

I decided after 10 years to see if there is anything anyone can offer me to make

my life a little easier and more stable since my condition has gotten

exponentially worse.  I took intermediate leave from work to explore those

options.  I am only 33 and I work full time and have a child I need to care

for. 

I started naturally at my primary doctors who referred me first to a Neurologist

one who was listed in the CMTA site.  The Neurologist took the time to evaluate

me and wanted me to do genetic testing " for the good of science " .  I asked what

that will do and he said just for research. 

He said I should take it easy and find ways of making things easier for me.  I

told him I worked a lot and support my daughter and he said " Ohhh I thought

maybe you were living in a group home " .  I was a bit taken back about his bed

side manor but I was able to overlook that because I was only interested in what

can be done to help me physically.  So after proding a while he referred me to a

Physiatrist.

I went to the Physiatrist who focused on my AFOs which I had the same ones for

10 years.  It made sense to me to have a new pair made so I went along with his

recommendation and went to the place they referred to me.

I went to the Orthotic Specialist who molded me and made a recommendation on

what would give me better support.  I was hopeful that something good would come

of it.  I anxiously awaited the braces to be made and when they were done they

were so poorly made I couldn't even stand with them without falling over.  They

determined the braces were not fitted well for me and made a whole new pair.

The 2nd pair had the same issue, one foot was poined up and the other down to

the right.  They melted them down and hiked them up but were unable to make ones

that fit.   I brought them to the original Physiatrist who referred me and he

took them and literally threw them in the garbage.  They tried a few more times

but was not able to make ones that were as good as the ones I had.  I tried to

go to a new place and my insurance turned it down cause the other place made

ones for me. 

I went back to the Physiatrist who referred me to another Neurologist who sent

me to a second Physiatrist who referred me to PT and OPT and Pain Management.

I went to the Pain Management Specialist first.  The doctor said he has to do

research on the " internet " about my condition.  Months went by and heard nothing

so I called and the doctor said he found nothing yet and is still researching

it.  Next I went to OPT who said since I was falling I really need the PT.  I

went to PT and they said they do not know if they could help since they do not

know enough about CMT. 

I asked about using adaptive devices such as canes, forearm crutches, etc.  The

PT sent me back the OPT who sent me back to the PT. 

Neither knew who could recommend those and I could try going into a surgical

store and ask them.  When I went to one naturally they wanted a script and would

not work with me otherwise.  He said I can go to my primary doctor who can write

me a script for one.  The pain management specialist called me back and said I

should also work with my primary doctor to see if he could manage my pain. 

So I started out with my primary doctor and ended there.  No one will guide me

in a clear direction and it seems when I say " CMT " it becomes a hot potato and

feels they are not the ones to treat me.

Can anyone advise me what to do?  All the places I went too were well known

reputable hospitals and I don't expect a cure but I was hopeful I would have

gotten somewhere besides the run around and ending up in a viscious circle.

Andy