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Inclusion-body Myositis How many are over looked

Posted , 4 users are following.

Guest
Guest

I started falling down, about 5-6 years ogo.

I rec,ed physo, I had spine op,as they thought it was trapped nerves,

I continued to fall down,

I went to age related clinics,I had mri scan, they said I had osteoarthritis.

They said there was nothig else they could do.

I looked on the internet about 10 months ago & Found I B M,this matched my symptoms.

My g p had no idea,but refured me to a neuroligist.

He confurmed I had I B M..

I had a biopsi december 2006.

They have now offered me treatment, {IVIG}but there is no evidence that it works.

If I had not found this myself, I would never had known,they would have just put it down to ageing.

So how many ,people are suffering ,unaware ,what is wrong with them.?

Or is that the plan ,ie, better they dont know ,as there is no treatment.

If so they will never get enough evedence to find a cure. :?:

2 likes, 4 replies

4 Replies

  • Sidney_Kac
    Sidney_Kac

    Posted

    Until May 1, I played a full round of golf every day[since I lost my wife 8 years ago] But on May 1 as I entered the club house I found myself lying flat on the floor. I found out that I had a broken rib and assumed that I had tripped over something, but a few days later I had the same experience. After two further falls, the last being on the platform of the Underground I saw a consultant Neurologist in Harley street. 3 consultants later, I was told by Dr.Lunn, in the National Hospital in Queens Square ,that he suspected I.B.M. The last fall I had was yesterday in a Post Ofice.I have had numerous tests including M.R.I.scan and E.C.G andI am going to have a Biopsy next Thursday but from my symptoms and what I have read I have no doubt that I have I.B.M. I should mention that I am 82 years old.

    I would gratefully appreciate it if any\"experienced\" sufferer could give me any advice on coping.[/quote][/i]

  • Guest
    Guest

    Posted

    Dear Sydney and Edgar,

    I'm sorry to hear of your IBM. Your stories make me sad, but hopeful. I know you are strong because you are here researching and reaching out. You're both fighters and that will serve you well.

    I am 46, married and have a 4 yr old son. We are US citizens, but live in Japan for my husbands work (corporate attorney). We love it here.

    I recently returned from Mayo Clinic in the US where they told me they believe I have IBM. The EMG (my 4th) showed muscle disease progression and with my symptoms, they are saying IBM. I go in August for another muscle biopsy back at Mayo (1st one 2 yrs ago was inconclusive/negative). I'm shocked and scared to get such a tentative diagnosis, especially with no proven treatment in sight. But, I will continue to gain strength for people like you who help me feel not so alone.

    All the best to you and you will be in my prayers for remission of your IBM. Take good care, gentlemen.

    Sunshine

  • jeanp
    jeanp Guest

    Posted

    Hello Guest,

    Just found this post while trying to research CFS and associated ailments. I had never heard of IBM. Think you must be right, many people may have this awful disease without it being diagnosed, or worse, being wrongly diagnosed and treated in an inappropriate way. Your reply to Sydney and Edgar was strong and brave; I wish you the remission of your symptoms which you wished for them. You too are a fighter, and I wish you well.

    Jean

  • dee53012
    dee53012 Guest

    Posted

    Same with Celiac disease, it is the most common autoimmune disease, but they only test fot RA and Lupus.  What the heck!

    I have Polymyositis (PM), is it similar to IBM?  I can't find anyone who has it.  they say iy is rare, I just think most docs a crappy diagnosers. 

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