Thank you, Thank you!

[Guest guest]

Oh this is a tremendous help! At least it's a start. Even if he

can't see me, maybe they can recommend someone that can.

What a relief. A starting point!

With regard to the EMG testing, I spoke with the Neuro (who did the

test) and said, " Just because it's negative, doesn't rule out Mito

does it? " . " No " he said, " it doesn't, but at this point, I can't

recommend the biopsy. If your EMG showed evidence of Mito disease,

then I could. "

I suspect it's an insurance thing. Gotta have 'this' before they

will authorize 'that'.

Stiff Persons Syndrome: I had the blood test done. And yes, I looked

it up. I fit 'some' of it, I just don't have the startle thing. I

cramp and spasm badly, but mostly at night. A backfiring car does

not 'make' me spasm, nor do any other loud noises. However, one

article I read said that in the early stages, the startle thing is

not present--only in the later stages. It'll be interesting to see

what the results are.

Again, my heartfelt thanks to all of you who took the time to reply

to my post. What a wonderful group of people.

~Kathy~

[Guest guest]

Kathy,

It is said time and time again that the patients with this disease have more to

offer than doctors who are oblivious to the many issues it can cause and the

requirements to diagnose and treat it. Stay close and you will learn much from

this group but what will surprise you most is that it won't be long before

someone new will join and post a question. Low and behold - you will have the

answer and feel comfortable enough to send it. We help each other and are one

big family.

Start to build your own file. Print out everything that applies to you and

about Mito and keep copies of as many of your medical reports you can get your

hands on in that file. Most of us have a binder that we carry to appointments

which is continually added upon as we have more and more tests. Mine is

zippered. This builds our case and we find that the doctors actually appreciate

it. We are our own advocates.

I'm glad you're here, enjoying the list and posting. No thanks are necessary -

list rule.

Alice

Oh this is a tremendous help! At least it's a start. Even if he

can't see me, maybe they can recommend someone that can.

What a relief. A starting point!

With regard to the EMG testing, I spoke with the Neuro (who did the

test) and said, " Just because it's negative, doesn't rule out Mito

does it? " . " No " he said, " it doesn't, but at this point, I can't

recommend the biopsy. If your EMG showed evidence of Mito disease,

then I could. "

I suspect it's an insurance thing. Gotta have 'this' before they

will authorize 'that'.

Stiff Persons Syndrome: I had the blood test done. And yes, I looked

it up. I fit 'some' of it, I just don't have the startle thing. I

cramp and spasm badly, but mostly at night. A backfiring car does

not 'make' me spasm, nor do any other loud noises. However, one

article I read said that in the early stages, the startle thing is

not present--only in the later stages. It'll be interesting to see

what the results are.

Again, my heartfelt thanks to all of you who took the time to reply

to my post. What a wonderful group of people.

~Kathy~