P.O. E.M.S. Syndrome

I understand where you’re coming from Ric. My husband was misdiagnosed for almost three years and was left with permanent atrophy and lost of function of his hand and foot due to misdiagnosis. When a person reads the forum, it seems to be not uncommon. I have to wonder why the neuro’s don’t go through a check list of things to rule out, and if they do that why does it take years. There seem to be so few conditions to rule out i.e. ALS, CIDP/GBS, polymyositis, vasculitis, myasthenia gravis, POEMS. Yet I have met more than a few people at the hospital having IVIG that have gone a similar route as you–and wind up taking info. into their neurologist saying “can you check this out?” and then they find that is the disease. I find it very scary that this is happening. I’m sure that your question about guilt will rock the boat. I always feel that I am disliked by my husband’s neurologist because I voiced something similar a couple of years ago. But so be it–they need to stand accountable. Good luck Ric, and I am so sorry for your bad news.
Laurel

Ric, I was doing some reading on the internet about POEMS and this came up –maybe that therapy is worth looking into.
Laurel

Valcade Therapy for POEMS Syndrome

I have had POEMS for four years. I was diagnosed four years ago with symptoms of nsevere peripheral neuropathy in my feet and hands, fatigue, a lot of numbness and edema in my legs. I had even had diabetes.

At first, I had tried chemo therapy, but it didn’t work at all. At that time, I was desperate to know what POEMS syndrome is and how to find a cure for poems syndrome.

Fortunately I had a chance to contect with a man whose wife had poems syndrome. He said that his wife had had two options in hospital. One was stem cell transplant and the other was Velcade(bortezomib). She had decided to take valcade therapy. After she had two cycles of valcade, she felt her symptoms got better.

I was encouraged by the news. So I consulted with my doctor and he agreeded me to have Velcade therapy.

Most doctors think that velcade can’t be a good therapy for poems syndrome. Because velcade has side effect of peripheral neuropathy. Poems patients already have that symptoms. So they think velcade make peripheral neuropath worse.

My doctor and I were also worried about that. But we decided to have five cycles of Velcade therapy and I have dramatically recovered from all symptoms. Before I had the therapy, I couldn’t run, jump. Walking was not easy for me too. But now I can run, jumb. I can climb a mountain. For last three years I have never taken any pain meds like neurontin.

Now I think Valcade is as good as stem cell transplant.

Dieno,

I’m truly sorry to hear your dx. I’m praying the information given isn’t correct and that the life expectancy is much longer than what you’ve written. I had no idea how often people were misdiagnosed until I joined this forum.

I hope to read a more favorable outcome.

Btw….screw these diseases and their residuals!! 😡