"flare?"
 

Hi, as many of you know I'm a long-time forum member, but, doing well, have been here less often of late. (Though I am happy to say lizajane.org is doing well!).

I've been strugglng with sinus infection which was successfully treated for February through May, and then returned in June. With it I've developed new neuropathy symptoms. My skin, everywhere, gets pricks and an itchiness, and there are patches which are chronically worse than other places. This is not one of those symmetrical things that I used to have. I never had small fiber involvement before, not like this.

I saw my neuro yesterday, and found that I had lost my ankle jerks, my knee jerks were down, and I've lost my arm reflexes. All of this fits what I'm experiencing.

So, even though I was improving over 8 years, there's a setback here. I'm trying to get an appt with Dr Latov, to see if he thinks IVIG can help. But that might not be so easy.

Oy.

summer
 

Liza Jane,
This is Summer and some folks are on sabbatical, vacation, sick, going thru medical tests etc. Don't worry about no one answering if that happens. You have given so much to this group, we'll all be here for you. I'm anxious for you to go back to Mayo in the neuro dept. Is that possible?

Billye

Liza Jane -

I'm a new poster at this site....as my neuropathy just began 3 months ago. I'm sorry you are experiencing this setback and hope you get through it soon. I must say that the information you provide is wonderful and I use each post to help with "treating" my symptons, understanding what the docs say, what questions to ask...

Thanks to all of you who take the time to answer our questions and share your trials and tribulations!!

Leslie

Hi Liza, could it possibly have anything to do with the medication you took for the sinus problem ?

Brian :)

meds and infection
 

LJ,

Just as Brian said - was thinking same thing... weren't you on several different types of anti-biotics at the same time? along with having the infection - for months?

My PN went from tolerable to severe in 6 months during which time I was on oral vancomycin and flagyl together and very sick with C-difficile.... the docs werent sure that it was the meds, or the infection, or the combo of both the finished off the nerves....

Did you get tested for any auto-immune markers? Hopefully it will let up... if auto-immune the IVIG would be worth a try....

Hang in there...

Lizajane,
Very sorry you've had a setback.
You've given so much to all of us, you don't deserve it.
Hope things resolve real soon.

I am so sorry. I can relate to flare ups and I don't get them especially when I don't do anything different. I wish this was like a normal thing where it gets better and then gone not the ups and downs and all arounds.I wish I had more to offer just you are in my thoughts and I hope you find something and someone to help you

Get well soon!!!!!

Thank you all. News
 

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.

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.