Get well soon!!!!!

I saw Dr Latov today, and many small things that have been niggling at me were explained to me. I no longer have a length-dependent axonal neuropathy. I have cerebellar involvement of some sort (I can't bear the word degeneration), as well as ganglionic involvement. I forgot how he decided the latter; something about the distribution of the neuropathy, which is now spotty, left worse than right.

The cerebellar findings were because I am clumsy in doing tests of the cerebellum, fall with the Romberg, and can't dor rapid movements with my fingers, hands or feet (tapping).

He tried to give a positive spin: since it's waxed and waned over time, and not just continually deteriorated, it's probably autoimmune, which implies IVIG might help. He just doesn't think Oxford will approve it, unless I'm in a hospital.

He's called Athena and they're to send a nurse to draw bloods for specialized tests for this--dna tests; and ordered a general panel of immune tests which I haven't had for a few years.

On the sinus front: I've been feeling somewhat better, but then it was clear I was absorbing the nasal steroid, and my adrenals shut off, so I'm off them now and waiting for my adrenals to return.

On the back front: I had a week respite from pain with the steroid fiasco. (That was a calculated risk; my doctor gave me the nasal steroid, but had me get my adrenals tested within one week.)

Things that cause cerebellar and peripheral and nerve cell issues: vitamin deficiencies, food allergies, mercury, and, I can't remember others.

That's the update: discouraging.

Hi Liza Jane. I believe this is my first time responding to one of your posts. Just want to say thanks for all the info you've suplied in your stickies. They've been immensely helpful.

In regards to IVIG and insurance in your post, I've just gone through the same process with Dr. King Engel in LA. There are multiple hoops to jump through. The blood work was over fifty lines on my insurance form ($10,000+ too), and, at least for me, they require a lumbar puncture and a muscle biopsy, and then any coverage is not a problem.

But be careful. For me, after getting the LP, my nerve pain has increased, coupled with a constant dizziness and muscle spasms and numbness on my right side. My neuropathy started as a result of a surgery, so after the LP I passed on getting the muscle biopsy. If you can avoid both of these tests and get IVIg infusions (if you indeed have immune markers from your blood work), that would be the way to go.

Good luck.

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.