Welcome aboard our myositis train.We all have a stamped ticket.We don't know where we're headed but at least we're on here together.No need to suffer alone anymore just log on here.We will lend an ear and maybe a little help along the way.

I've had poly for 15 years but not neuropathy that I know of.Mary on here has it and takes neurontin for it.I think it has helped her worse symptoms somewhat.She can fill you in more.

I fell constantly and finally settled for the safety of a wheelchair while I had a few brain cells left.I pushed my wheelchair around the house for a lon time.It was more stable than a walker and was great for loading up laundry.

Let know some of your managing skills and how you cope.

As I welcomed you to our site, we are pleased that you told us about your illness.

I have IBM so can't offer you any help with your disease, but Dr. Aziz Shaibani, director of Nerve & Muscle Clinic of Texas at the Houston medical school, and I are co-authoring "Coping with Neuropathy." It will be having real-life stories about how Neuropathy and it's accompanying diseases from the patients. The book will be quite similar to the "Coping with a Myositis Disease" book that is available following the links on the HOME board.

I wasn't aware that Neuropathy is usually always associated with other diseases. Several of the stories which have come in from the patients say that the drug "Neutron" (I hope this is spelled right) has been a God-send for their Neuropathy. You might suggest it to your doctor to see if it helps you.

I learned that Neuropathy is involved in diabetes, AIDS, all kinds of muscle disorders and other medical problems I never thought about any association with Neuropathy. I thought it sort of stood alone.

But the sooner you seek treatment, the better you will be. Of the real life stories of those using Neutron (sp?) tell of being able to walk only a few feet, then up to 10 min, slowing increasing to an hour, while regaining their balancing act.

I didn't intend to mean that ALL Myositis patients have a tendency to get Neuropathy. Studies have shown that 10-15% of IBM'ers have a form of Neuropathy. The studies of PM and Neuropathy are less than those percentages.

In the forthcoming book, I've receoved, w/n the past two weeks, two stories about Neuropathy & IBM and two stories about Neuropathy & PM - so the book with have at least two sections: Neuropathy and all the related diseases, then Neuropathy with Myositis diseases.

If you and husband are interested in submitting your Neuropathy & IBM story for the book, go to HOME and click "Contact Us - me)" and I will send you the data form to follow. (Or simply email me from my posting.)

I have five autoimmune diseases and one of them is diabetes mellitus with a controlled blood sugar, but if you have diabetes, the other damaging factors continue even if your sugar is controlled. I have had DM two years. The first, untreated year I had only skin problems on top of those of Sjogren's. In one year I've come to a point that most people here describe as taking 25-30 years to reach. I had systemic Sjogren's with mixed underlying connective tissue disease (or autoimmune disease if you will) for 10-1/2 years prior to that. Lupus (which is almost always positive when DM is diagnosed) and Graves' disease of the thyroid are the other two autoimmune diseases with the most severe factors now being the DM and life-threatening drug reactions.

As I say, when I read some of the other stories I get very confused about my condition as opposed to everyone else, and I still feel set apart somehow.

I love everyone here, and as some know, I was really sick last week with that stomach virus; on Friday, I will be honest, I did not think I would make it through the day, and my husband worked 18 hours that day.

Yes, I have severely burning, painful feet and the extreme weakness (but no foot-drop), tingling which progresses to a point of "no feeling at all", but I still think that this is all related to the DM. The "no feeling" extends up to my hips and is also present in my arms and hands, all the places where the severe muscle wasting is. My doctor indicated last week that we can't go down or up on the MTX and Pred. I can still drive but don't drive long distances because of pain and weakness. I just get very confused and like Edith, feel very alone, but it is with all the differences I read.

This morning I sent a post to Karen in reply but it was not posted, so I am glad I came to the board. I "reposted" it from here.

I replied to you when you were so sick.I can't really respond to post on neuropathy because I don't have it,that I know of but I knew Mary does and I asked her about neurontin.I thought everyone could learn from her experience.

I know you were really ill last week and I'm so happy you're doing better.I didn't know you were so ill until you were on the mend.You have more than your share of health problems.You always cheer us up on here with your poems and beautiful cards.

Are you getting your strength back from being so sick? It took me quite awhile after the flu.Kelly was asking how your husband was doing after his car accident.You may have missed his post.