Hi Liza Jane:

It's been a while. I am sorry to read what you are going through. I do hope you get it sorted out and you get some positive answers. You've helped us all so much.

Dshue:

You had an LP and your nerve pain got worse?? And you got muscle spasms.
I didn't know you could get such side effects from an LP. I once read that after it, you aren't supposed to raise your head for a few hours.

But an increase in nerve pain?? That's a new one. Did it finally subside??

Thanks much, Melody

P.S. My husband Alan has been getting IVIG for over a year. He said this the other day: "I hope they never stop giving me the IVIG, my body is sooo much better since I'm on this".

Amazing how it helps some people isn't it??

Mel

Melody --

For most people a tap is not a problem. But if you are unfortunate enough to get a leak afterward, then the trouble begins. It's a nightmare, actually. My first blood patch didn't really do the trick, so now I'm just in leakage limbo I guess.

If you're curious about the problems that arise from an LP, check out the CSF leak board at Brain Talk. It's pretty good stuff.

-- Dennis

NOW I remember reading about bloody patches and leaks.

Thanks for reminding me.

Melody

I'm not worried about a spinal tap. I had a big one with my myelogram this winter. But they didn't send the right tests.

I don't know that one will help me at this point; I just have to wait for a whole new set of bloodwork.And I did find one autoimmune cerebellar/neuropathy, and it has an antibody.
If I'm lucky, I'll have it.

How odd to hope for an abnormal test!

Thanks you folk.

If Glenntaj is around: Dr Chin, your fave, is doing new EMG/NCS on me.

Just checking in and hope the new emg/nc gives you some answers and that you get the rest of the tests you need. So frustrating to have to wait and almost beg for some tests. Many thoughts your way. Feel better

Hey Liza Jane--
 

--you'll have fun with Dr. Chin. Say hi to him for me. :p

Crappy that you're going through this now. Is that antibody you found a Purkinje Cell antibody or related?

I know that the anti-GAD antibody can be implicated here, but you know whenever I hear cerebellar ataxia with your history, I start wondering about thryroid function and/or the anti-gliadin IgG/IgA antibody binding to cerebellar Purkinje cells as a manifestaton of gluten sensitivity . . .and given Dr. Chin's expertise in gluten neuropathy, you couldn't be in better hands.