Neurontin at one week: MEH!

[Carolina]

Wow Sjogren's Angels, so much information.

As far as I know QD there isn't ANYTHING to do about my neuropathies, Peripheral (Profound in my legs and feet) autonomic (not so bad in my bladder, heart, bowel, I would say moderate at best, but I have a tilt table test in late Fall most likely), and small fiber (which is all that face, lip, tongue, hands, and arms tingling, prickling, pain, and sometimes itching and burning).

Neuropathy of either Peripheral or small fiber is neuroapthy that you can feel starting...the burning, tingling, feeling of needles stuck you your finger tips, face burning, lips and tongue....those you can feel.  As far as I know QD, there is no treatment to stop or reverse the progress.

I've studied and researched, and remember my husband is an Immunologist, Medical School teaching and SERIOUS research.  He knows what's going on. And it can't be stopped if it is my immune system attacking me. 

Plaquenil, Methotrexate, Prednisone in large doses, those will slow it down, perhaps.  I don't know.  But they exact a fairly high price.

So hiding the symptoms, while the disease progresses?  That's OK by me, since I'm already 72.  For the rest of you, we each pick what we can, and choose for ourselves.

My face is still tingling and burning...so I am not taking enough neurontin yet, but I just upped the dosage today.

The side effects that MichBlueEagle, described so accurately seem to have receded at last, after just one week.  But stay tuned.

Mich, the hot and cold feet can be both Periopheral neuropathy and Raynaud's Syndrome.  I have both.  Are your toes blue or purple or do they turn white when exposed  to hot water?

My feet are usually ice cold (and the rest of me is hot hot hot and my head it sweating) and then in the middle of the night they turn bright pink and are hot hot hot.

This is just the neuropathy.  My PN in my legs is profound with two of the three major nerves completely 'gone', unresponsive.

I have NO problems with my spine;, except severe degenerate disc disease in my cervical spine.  Places with both 'dead' nerves and muscle'  But not bad enough yet for surgery, and I hope NEVER will I need surgery on my spine.

Hang in there Mich.....and I'm glad you're here.  Here there are many with experience and while each of us is very different, we do have some things in common.  And we understand what is happening.

How scary, and painful, and weird the whole experience is.  And how few doctors understand anything, and almost no one in our public or private lives has a clue what we are experiencing .

Sometimes we feel like we are going off the rails...we are truly hypochondriacs, exaggerating every little thing.  and other times we feel as if everything is happening to us.

Mostly we have to live with a great deal of uncertainty.  These disorders that involve our Immune systems are difficult, each of us is different, and we need support and sharing.

Hugs,  Elaine