Re: Balance and Can't Get Support (Literally)

[Guest guest]

Hi Mark,

My situation is very frustrating.  I took an intermittent leave from work so I

can go to all these specialist and I have gone to so many because after they

evaluate me they refer me to a different speciality.

The order was something like this:

Primary doctor->Neurologist->Physiatrist->Aquatic Therapy->Pain

Management->Neurologist #2->Occupational Therapist->Physical Therapy-Physiatrist

#2->Pain Management #2->Orthotic place (botched 3 pairs in a row)->Primary

doctor.

I must be doing something wrong because I made a full circle and noone treated

me.  The 1st pain management who saw me said he never treated a CMTer and would

do research on the internet, I figured he forgot about me then after 4 months he

called and said he can't seem to find anything good for me but he is still

working on it. Both neurologist said they only refer them after the evaluation

and give instructions to the Physiatrist who said to get new AFO's who batched

them 3 times and the end result was I was better off using my old ones. 

Aquatic therapy was the only really positive thing but the insurance only

covered a few visits and I have to pay out of pocket for the maintenance

program. The list goes on.  Most have said I need to be realistic in my

expectations for treatment.  No one wants to prescribe me a cane or anything

else because of liabilty, they are afraid since they are not a specialist in CMT

and they prescribe me one and I hurt fall with it they may be liable and don't

want to be sued.  I think maybe they are worried because I am an administrator

in the courts....

I actually just emailed MDA and hopeful but reluctant they can point me in the

right direction.  Unfortunately though I see the local office by me was one of

the hospitals I went who told me they were not equiped to help me with my

condition so we shall see.

Andy

[Guest guest]

Andy,

Years ago I went through the frustration of being passed around from Dr. to Dr.

and none of them offered anything but a referral to the next Dr.  For years when

I was having trouble and my husband would tell me I should go see the Dr. I told

him unless I am bleeding profusely or unconcious there is no reason to go to a

Dr. 

 

I recently had 2 bad falls within weeks of each other and went to the Dr.

because I was seriously injured although nothing was broken.  It did start some

referrals again but I found a neurologist that took interest and I was feeling

really lucky, then he referred me to a podiatrist that refered me to a ortho and

the cycle started again with no one offering me anything. 

 

It seems the Dr. just don't know what to do with us.  I bought my own canes and

plan to just take charge of my own health.  Belonging to this group and doing my

research has made me much more aware of what CMT is and what can be done than

any Dr. I have ever seen.  So it just doesn't make any sense to go to any Dr.

regarding CMT issues.

Cyndi