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any idea?

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Tinala1111
Tinala1111

Help me with this mess of a body!Posted about 18 hours agook, background first.  Diagnosed 3 years go with rheumatoid, high RA factor, high ANA, etc..  next came Sjoerdens syndrome and now Behcets Disease.

Been on a few different meds with no luck yet at controlling symptoms.  Recent blood work showed these levels....

MPV- 6.0

MCH- 26.3

RDW- 17.5

Basophils- 0.4

Monocytes- 7.4

Neutrophils- 44.8

Lymphocytes- 45.4

Esinophils- 2.0

the MPV, MCH and RDW have been off for a few months.  I have no idea about these others.  However, doc ordered a PET scan for next week as he said with the chemotherapy and biological drugs I have been on that the risk for lymphoma and other cancer is very high, which I knew going into this fight.  Now, I am usually not one to worry and fret over test results but this has got me really worried now.  A lot of the symptoms I am experiencing are also due to the autoimmune disorders I have but they could be explained also by cancer of some sort.  Weakness, fatigue, neurological problems, shortness of breath, joint and muscle pain, unexplained bruises, easy bleeding,constant infections, etc..  I have not lost any weight though.  Just want to get some advice and ideas, thanks. Report this

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1 like, 6 replies

6 Replies

  • margaret22116
    margaret22116 Tinala1111

    Posted

    Hi. I had all of these symptoms and I too have Behcet's. I have been diagnosed now for around 13 years. I think at points during that time I felt maybe there was something else going on but there wasn"t.

    I got compkete remission from all of my symptoms by using a combination of interferon alpha and mycoohenolate. You don't mention which you have tried.

    If your meds aren't working you may need a change. When my symptoms went they all went. These drugs are not without their own pitfalls. I have had to stop taking interferon recently because of problems I have encountered which may or may not be related.

    I understand what you are saying about how bad you feel. I've been there. Where are you treated for your Bdhcet 's??

  • ihavenonickname
    ihavenonickname Tinala1111

    Posted

    Hugs! Rheumatoid is a damnable disease. And all of the other secondary issues can drive a sane person mad.

    I have fought juvenile rheumatoid arthritis since I was 11, 54 years ago.

    I have had cancer twice, and I am clean.

    When cancer is caught early, it is not so bass. But I agree, the word is frightening.

    I have been on DMRDs & Biologics since 1999...Enbrel, injections, Hummira injections, Rituximab infusions for almost 6 years., and stuff that I am not thinking of right now.

    Nothing you listed above is different from what I am experiencing right now.

    Did I mention that I also have Myasthenia Gravis, Mitral Valve Prolapse, Rhumatoid Lungs, no thyroid, Crohn's Colitis, Sjogren's Syndome, Raynaud's Syndrome, high cholestrol, a myriad of artificial joints,

    My point is that you are not alone.

    Here you will meet many incredible, inspiring people who will be the shoulder when you need to lean, the arms when you need a hug, the safe place when you need to cry out in frustration.

    The PET scan is for your protection.

    Do not allow this damnable disease to beat you!!!!

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