came back from Cleveland confused!!!

[Guest guest]

I have been gone for a month, one because I had 2 appts in Cleveland a month

apart and I needed a break. This thing has been a bit stressful on my marriage.

I saw a neuro there and he ordered a bunch of tests and I felt finally!!!!

someone is doing something here. I went back a month later, he didn't even wait

for the results before dropping me. He told me he couldn't help me. Aren't these

guys supposed to be the

problem solvers?

Basically he said that the EMG didn't match the nerve biopsy,it wasn't bad

enough. I don't really understand the problem, if the biopsy said one thing,

what difference does it make if the EMG isn't bad enough?? He said that there is

no doubt its abnormal. Peroneal nerves on both sides aren't working properly but

he expected different results. He wasn't the one who gave me my 3rd and most

painful EMG, I wish he had, maybe he would have found something different. I

honestly don't know. What was funny though is that he

put in his report that I DO have CMT type 2 subtype C??? there are so many types

now. My swallow study proved that I am delayed when I swallow. I had switched to

bubbly drinks so that I can feel them go

down, its something I already knew but I now have proof.

I also had a pulmo study done. They were going to do a methocholate (sp?)

challenge but stopped it because i was less than 60% of my original spirometry.

I did much worse laying down, this again was not a surprise to me.

I have been hospitalized 4 times just this year for " asthma attacks " that last

me months and usually a week in the hospital. I don't bother telling them about

the neuromuscular connection because then they don't treat me at all. I prefer

them call it what they

want so that I can at least get treatment and breathe again. So far they haven't

linked my lungs to my decreased muscle mass.

I am going to my local neuro next week who heads this chapter of the MDA, I am

hoping he has more positive news. I honestly don't know where to go from here,

it gets frustrating.

The only people who seem to be helping are my pain management specialists. I was

put on Fentanyl to try to wean me off of the 40 mgs of Percocet I have been

taking a day to try to get through it on my feet. I don't know if the fentanyl

is helping yet,I have to

go up slowly in dosage.

For those that don't remember me I am 35, mom of 2 boys 12 and 7. I am a SAHM

because no one will hire someone who is in the hospital every other month and I

homeschool both boys. I am so incredibly tried but I know I still need to figure

this out, it's so difficult

when the Drs dont want to look into anything. they just want to drug you and

make you go away. any advice welcome! thanks for listening!!!

Lenore in TN