Hi teetee7, thank you for your kind post.

I find that whatever kind or amount of 'condition' we have is very difficult for us, and a bit scary. Particularly if the cause cannot be found, or if found cannot be treated.

People expect conditions to be diagnosed and treated and cured. People aren't equipped to handle chronic conditions. This is why forums like this one are vital to our health and sanity.

I am part of a group that supports those with Primary Antibody Deficiencies, and another group that supports people with Immune Disorders that attack their organs and systems, like Sjogren's, Lupus, Hashimoto's, Rheumatoid Arthritis, and any of the over 100 autoimmune conditions.

And YES, locusts is the sound in my right ear, both ears were plagued with 'locusts' at the start. Fortunately I'm able to 'tune it out' most of the time.

I have a 'sound machine' next to my side of the bed, which plays a soft constant sound which helps for some reason.

Cymbalta was my magic drug. My son is a psychiatrist and recommended Cymbalta which I started it in 2010, and with Aleve and Cymbalta I had almost zero pain.

Unfortunately in 2006 I begin to have serious problems: Myoclonus (which is shaking in some part of the body) and Syncope, which is sudden collapse to the floor/ground. No dizziness, no warning, I always fell on my right side. I could be holding on to my walker, and would just let go and collapse. This went on for a year and a half. I had to stop driving, because I didn't know when I might fall, if I were on my own.

I had to buy a medical alert bracelet to wear if my husband was out of the house, in case I fell while he was away.

It turned out that Cymbalta was the cause. And SSRIs in general, since I tried Prozac as an alternative and the problem returned. Wellbutrin doesn't seem to cause the problems, but now I know that anything can happen any time.

Fortunately I was never hurt badly when I fell, which was about twice a month. The Myoclonus episodes of strong shaking on my left side, usually my arm, but some times more extensive, did not hurt, and had no warning. These happened sometimes three or four times a day.

I developed gastric irritation from Aleve and had to give up all NSAIDS. Fortunately I have a Pain Specialist at Duke, and he has helped me find alternatives to Cymbalta and Aleve.

I also take a maintenance dose of a corticosteroid, Medrol (methylprednisolone) which allows me to tolerate IVIG every four weeks. I have a delayed reaction of Inflammation. Inflammation causes pain, fatigue and depression, and for me, also itching, until I started the Gabapentin. I take only 2 mg of Medrol every other day, and have for over 5 years.

If I have an inflammatory flare, related to the attack on my body by my Immune System, I take a larger dose of Medrol for a few days, to interrupt the flare of inflammation. Rather like a Prednisone Taper, if you've ever had one. But I just take it on my own, with extra Medrol I have on hand.

Do you know why you have PN and SFN? I had EVERY SINGLE test, 3 MRIs and 2 CT scans in one day, blood tests, genetic tests, spinal tap. And I've had them all several times. My neurologist went to extraordinary lengths to find some cause that might be addressed.

In the time I was having these tests, I was found to have a Primary Antibody Deficiency (IgG and IgM) and spent a great deal of time with my Duke Immunologist, who also does research and teaches in the medical school. She believes that my Immune System, which can't protect me adequately ALSO attacks my organs/systems, probably with Cytokines (not autoantibodies, which is the usual case).

Once I started IVIG, I stopped being sick all the time. In the five and a half years I've had IVIG, I've really only had at most two minor infections, which is amazing. But I never had the terrible illnesses some have, and I never had pneumonia and wasn't ever hospitalized with my infections.

My husband, by weird coincidence, is a research immunologist, who did Organ Transplant research and taught at Boston University Medical School. So he understands my conditions, and also knows that there is no cure and no treatment currently available. Just management of symptoms.

I can't wait to read the post here at the Mayo. I'm sure I will learn a lot. Thanks for your kind post, teetee.

Regards, ElaineD