Spinal tap results =
 

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.

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

I may be having one as well.

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

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

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.

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?

nerve biopsy
 

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

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.

Thank you greatly Kitt.

The only problem with getting treatment is that it isn't FDA approved. (IVIG)
So you need a diagnosis, which is where the nerve biopsy would step in.

And I'm leaning towards not getting it done.

Come to Canada
 

Hi - Fran here again - I get IVIG here in Canada even though I don't have a diagnosis. I go once a month for a full day (6 hours). I am not sure it helps as I continue to deteriorate slowly but I like to think things would be worse if I didn't get it!!! The cost is astronomical so I am very lucky to not have to pay or worry about insurance etc. I know this doesn't help you however.....

I have a pretty good insurance, but its through the state, and they would probably need a reason for it.

But I found out on the CIDP forums that they changed the diagnostic criteria for CIDP.
So, I need to figure out what it is now and if I can be diagnosed based on what I already have?

I tried searching it on google, but came up empty handed.

I called my neuro's office today to tell them I didn't want the nerve biopsy and ask what my other options were, and they said I may not need it anyway. *shrugs*

So I don't know what was evident on my EMG.

I requested the dictation, but it wasn't available.. they said to call again tomorrow.

WOW! finally caught up on all the posts here! LOL

Fran *waving* another Canadian here :) thanks for the inside info on the biopsy. I'm really on the fence about this *sigh*. I still have to go back and look at the links that Kitt provided.

Diag....no I have not had a spinal. I can't seem to get anywhere here with my docs. *sigh* again.

Kitt...yes it is a really long time. I was told our lab is the slowest in the country luck me!

Can't wait to hear/read what your report says Diag. will be watchin for it.

diagnosese
 

hi, i have heriditary pn determined by my sural nerve biopsy and all other tests negative as far as cause.... the nerve biopsy shows severe damage - before they did the sural nerve though they did all the dna testing available (plus all your standard tests that showed no nerve conduction, etc) but auto-immune, spinal, sjogrens etc all ok... my doc treated me with high dose weekly ivig saying i had cidp based on i dont know what - but it did not help - now they are sure its a form of heridiatary there is no genetic test yet for HSANII....

i dont know how the skin biopsy feels or if it shows as much as the sural nerve, but my recovery from the sural nerve was only a day or so, even with 12 stiches in my leg.... it is numb 10 years later, but was before, so no biggie... they used some kind of anesthsia that didnt work when they cut the nerve itself, yes, that hurt like heck, but the doc said that shouldnt have happened.... and was over in a second.....

hope you can get some resolve - at least then they can give prognosis and you know what you are dealing with!

No - HSANII (with motor involement too):(