[diagnonsense]

Clear.
No protein.

So now I need a nerve biopsy to check if the demyelination is perhaps CMT, or if its actually CIDP, or if its vascular.

She is taking it from the sural nerve, which is one that I have no response from on the EMG.
I already have a lot of numbness, and if it helps with the diagnosis, then I will do it.

2 nerves for sure had conduction blocks. (both sensory)
I don't know the rest of the findings, other than she said I did have slowing.

I asked her to mail me the results.

[lynxgal]

Good news that the fluid is clear! When are you having the biopsy done?

I may be having one as well.

[Kitt]

lynxgal, you still haven't gotten your DNA results? I'd think twice about a nerve biopsy. There is a skin biopsy that can be done.

[diagnonsense]

Kitt- Would the skin biopsy be able to differentiate between CIDP and CMT?

[Kitt]

I don't know without doing some research. I do know that a nerve biopsy can cause permanent damage because a section of the nerve is cut out. It also can cause long term pain or permanent pain. At the least, it could be permanently numb. echoes long ago also said this.

A friend of mine's daughter had one. Her Mom told her not to do it but she did. She has regretted it ever since. She knew that she had CMT but a doctor talked her into the nerve biopsy. A skin biopsy is much less invasive if something like that is needed. Even Dr. Shy from Wayne State University told us that the nerve biopsy is not needed and that the skin biopsy was much better. He is an expert on CMT and also into research on CMT.

Sorry I can't really answer your question. Perhaps I will run across something. DNA blood testing is still a good way to go. Yes, expensive but http://www.athenadiagnostics.com has a plan to help with the cost.

[lynxgal]

Hi Kitt...still waiting on b & e results...sept or oct when i will get them back they say.

Yes I have been weighing the pros and cons. Have not made a decision as yet. I am thinking long and hard about it. I have not discussed the skin biopsy yet with my Doc.

[diagnonsense]

WOW lynxgal!!
That is a LOOOOOOONG wait!


I really think I will have the nerve biopsy because they are still trying to decide in my case if its CIDP.

Which, the nerve biopsy could show that I have a hereditary condition, but my mother refuses to have an EMG, and no one else has anything other than MS, which I do not have.

Good luck in your decision Lynxgal.
If they really think you have CMT it may be best to do the skin biopsy.
If they don't know .. think about the nerve biopsy, even though there are lots of complications.

Also, have you had a spinal tap?

[Kitt]

Originally Posted by diagnonsense

Kitt- Would the skin biopsy be able to differentiate between CIDP and CMT?

I did find this on CIDP. It is closely related to Guillian-Barre syndrome which is an autoimmune disease. You probably know this already.

http://en.wikipedia.org/wiki/Chronic...polyneuropathy

[Fran E]

Hi - I was in the same boat. I had a spinal that was non diagnostic, and then had a muscle biopsy that showed demyelination but also non diagnostic. One neurologist said I should have the nerve biopsy, the other said no - for the reason that there can be permanent damage etc. I hummed and hawed for a long time but as things continued to deteriorate (albeit slowly) and I was getting no closer to a diagnosis I decided to have one. Here is what you need to know. The procedure HURTS! They do not numb the nerve - they numb the skin so you don't feel them cutting into you but then they have the nerve all exposed - it looks like a string of spaghetti - and they cut it. The doc accidentally touched it with his scissors before cutting it and I almost jumped thru the roof so I had to brace myself when he cut it - and it was incredibly painful. But - it only lasts for a second. And of course you feel nothing when they sew you back up. The other thing you need to know is that the recuperation period is 6 weeks - so off your feet or limping for much of that time. As for permanent damage - mine is permanently numb and if you touch the area around it it is like hitting your funny bone - kind of tickly painful - but certainly tolerable. Unfortunately for me the result was - again- non diagnostic. More demyelination and inflammation but that is all they could say. So that part sucks but I don't regret getting it done as otherwise I would always wonder.
By the way - that was a year and a half ago and I still have no diagnosis so i am getting reconciled to this perhaps forever being the case....
Hope this helps

[diagnonsense]

Thanks to Fran I've decided that I am not going through with the nerve biopsy unless I get general anesthesia!!!!

And if my insurance won't give me general.. then I won't go through with it.

I'm done with painful procedures.

I'm pretty sure I actually have CIDP, or one of the varients called MADSAM.
Its a primarily sensory variation.

I was certain I had CMT until stupid me figured out what a conduction block was. *DoDO*

NE way.. since CMT a person need not have a conduction block and I have more than 1.
(even with clear spinal fluid)
And since CIDP persons can have clear spinal fluid, it just makes diagnosing harder.. I'm going to have to go with that one.

How do I get the diagnosis without the nerve biopsy?
Cause I do need treatment.

Blach, I really hate all this diagnosis crapola.