The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Doubts about diagnosis, and afraid of medication.

Discussion in 'General Treatment' started by Kathy, Apr 8, 2012.

  1. Kathy

    Kathy

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    Hi everybody, Im a newbie in that this stuff. Since this last year i began with all the known and horrible stuff headaches(i had constant headaches all last year) lymph nodes, and in the last days, very tired, also nose itching, and bleeding

    I went with lots of doctors since that time. Including neuro and rino, and everybody just said chronic sinusitis.

    But this year in January i began with joint and muscle pain, also stomach pain, and fever. Later, i began to feel muscle twitch, and the sensaion of needles in my arms legs and even face.

    After meany doctors, i went to the reumo, that after showing my last tests for the other doctors, he said i had a vasculitis, and he sent more tests. test went positive.. But with an antibody that i read that could be unespecific. My ESR is 25!! and i have enough cholesterol to fry a cow....

    Well, this is may situation, i hadn't seen to reumo again.. (holidays) but i ill see him tomorrow. Im afraid of this, because the medication for vasculitis is very agressive, they will give cytoxtan, infliximab or Rituximab and tons of steroids... If this is another thing, i. e. some virus like i believe i have... this things could kill me right?

    I'm a little concerned, but what else can i do? the pain is every day worse, i cant think i another thing and i very depressed right now...

    Somebody could give a little advice? Somebody in a situation similiar?


    Regards


    Kathy
     
  2. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    Hi.. Im curious about what test the doctor did which made him come up with the vasculitis?
    With some of the historic ME outbreaks in the past, vasculitis was noted as being one of the symptoms.

    There is very little in the way of drugs which may help ME/CFS but Rituximab is one of the hopefuls for this illness http://www.medscape.com/viewarticle/752067 . You may find this new diagnoses to be a great advantage even if you do have ME/CFS. I'd personally love to be able to try that med.
     
  3. Kathy

    Kathy

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    I have exactly now, 1 week with treatment, just a little low dose of steroids.... Is good to have just low doses, but... I cant feel any improvement..... It's really vasculitis?
    Is too early? I feel very bad.... :(
     
  4. nanonug

    nanonug Senior Member

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    Would you clarify what you mean by "stomach pain"? Is it exactly in the stomach or does it also extend to the rest of your abdomen? Is it before or after you eat? Does it affect your bowel movements in any way? Are your stools well formed or loose? Are they brown in color, pale or yellow-greenish? Does you sinusitis by any chance get worse after you eat? Do you experience tachycardia? What is your resting blood pressure?
     

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