Introduction/doctors

[Guest guest]

Hi,

I am new to , but not to CMT. I have had the dx for 12 years.

Have been getting disability since 97.

I do have a question though.... How do you all deal with stupid

doctors?

Due to insurance and where I live I have few choices as to who my

doctor can be.

I moved back to the area I grew up in and doctor retention seems to

not be great.

The first doctor I was able to go to never saw me, I was seen by the

PA. I have nothing against PA's but this one didn't have a clue. He

gave me several thyroid tests due to the fatigue and refused to

beleive I was in pain. Kept checking pressure point for Fibro.

Finally gave me a script for TOpomax (neuroleptic) which after three

doses caused high pressure in my eyes and I lost my eyesight for 2

weeks. After repeated calls to him and even a visit he still wanted

me to take the med. So, I went to the ER. The doc there stated it was

dose related and didn't go away until you stopped the med. I now have

to go to an eye doctor every 6 month to check the pressure in my eyes

because the pressure is still to high. The doc at that office left

and didn't even bother to tell her patients that the new doc wouldn't

take certain insurances.

So, several months without a doc. My current doc (seen her twice) on

first learning I had CMT, told me she had had a couple patients with

it in the past.

After talking to me for 15 minutes, and watching me walk three steps

determined I was depressed. So, gave me amitriptyline.. I thought

okay, I have used this in the past.. It did help with the nerve pain

and depression..try it.( I have little nerve pain, more muscle and

joint pain)

I took it for 2 months ( anti-depressants take at least 21 days to

work) and it made me a zoombie, I could barely move off the couch..

felt more depressed and hurt horribly. Went back to her. Told her and

she says, give it more time, you need to volunteer and go back to

work your depressed. ( I educated people for years on compliance with

medication, and medication education in the mental health field.. was

a nurse knew that med wasn't working for me.)

I am a girl scout leader, volunteer for our community group and PTO

, have 4 children and a father I help care

for.. what more does she want me to do.

I simply told her I wasn't depressed enough to cause my severe

fatigue or pain and but would take the medication for depression. She

wanted to know what I wanted her to do... I replied help me lessen

the fatigue and pain.. Well, she has decided to send me to a

neurologist.

She stated I do not have a neurological problem and until I went to

the neuro she would only perscribe the anti-depressant. Nothing for

pain not even an NSAID.

Now I am being reveiwed by SSA and I have a doctor that says I don't

have CMT.......Ugh!!!

Anyone know of a CMT doc in Northcentral Pa... not even a CMT doc

just one that knows something???

The doctors I have had in the past 12 years just get worse.

I have had 6... The first dx'ed me and then moved. The second thought

I should take valium and the I moved. The 3rd was pretty good and he

left as well. The 4th I had the longest and he was okay, dealt with

my problems but tended to give to many meds and thought every problem

I had was CMT ( took a year to DX IBS) and you heard about the last 2.

Any suggestions on making your doc hear you better.. Gosh, I really

shouldn't have a problem since I was a nurse and talked to them as a

job.. Maybe that's it... I expect to much from them??

But really all I want is to feel semi normal... I know they can't

cure me or even make evrything thing disappear. I would love just an

hour without fatigue or something hurting... I don't think that is to

much to ask..Is it??

Sorry, what a moaning first post!!! But, I am at my ropes end with

this. 3 years of bad doctors is hard to swallow and when you have to

start over it's not easy...

Jan