P.O. E.M.S. Syndrome
AnonymousNovember 19, 2010 at 6:49 am
Questions I am asking neuroloigist today:
life expectancy is 8 years. Is that from first signs and misdiagnosis or from now? I mean I know the answer and how my body is reacting, so long run I have 18 months short term 1 year.
Are we starting radiation and when? If I do not do radiation will it shorten my life expectancy or will allow doing radiation give me a higher quality of life with it or without it?
What are the chances of a STC? Or at this point because I was dx wrong is it too late?
Oh yeah last one; do you as a medical professional feel guilty at all because you did not dx me properly; and now my wife and children have been short changed in what we could have done if we knew earlier-or do you not give a damn because oh well mistakes happen?
To all of you my friends on this forum: do not stop trying to find answers. Do not let the medical world push you aside. In the most elogant words of Mr. Soapy. SCREW C.I.D.P. More than that screw mis-dx
AnonymousNovember 19, 2010 at 12:04 pm
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.
AnonymousNovember 19, 2010 at 12:53 pm
Ric, I was doing some reading on the internet about POEMS and this came up –maybe that therapy is worth looking into.
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.
AnonymousNovember 19, 2010 at 4:50 pm
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!! 😡
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