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Thread: What do you have?

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    tgal's Avatar
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    Default What do you have?

    Someone brought this up a while back and it was a great idea but (of course) I forgot about it.

    So many people that post here feel alone when they are diagnosed with, are suspected to have or think they might have. Some even ask "Does anyone here have ________ or am I the only one". This is why I am making this thread (and thanking whoever it was that suggested it).

    WHAT DO YOU HAVE- If you feel like it share with others what you have been diagnosed with or what they (or you) are thinking that you have. Maybe this will be a way to hook the new people up with people that share their disease(s).
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Well, for those who don't already know, I have Systemic Lupus, Secondary Progressive Multiple Sclerosis, and Trigeminal Neuralgia. Hey, if you're gonna have multiple autoimmune disorders, you might as well do it right and have the worst of the worst, right? I often wonder what could possibly be next for me-spontaneous human combustion maybe?

    Of the three, Trigeminal Neuralgia is by far the worst to deal with. Even though the flares are of a relatively short duration, the pain is indescribable. It's completely debilitating. SLE and MS don't really cause me any sort of fear anymore, but the prospect of another TN flare has literally caused me to have nightmares in the days following even a minor flare. I wouldn't wish it upon my worst enemy.

    Rob

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    As for me, I have yelled " ME" to often, when they gave out AI diseases.
    I have Systemic Lupus, RA, Fibro, Sjoegrens and possible Raynauds.
    Between muscle pain from Lupus, muscle pain from Fibro and joint pain from Lupus and RA, I am in constant pain, most of the time, I feel like somebody has used me as a punching bag.
    With a flare, there is also, major brain fog, fever, nausea, dizzyness and more pain. Ugh I am such a mess.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    Well here is what they tell me i have. Systemic Lupus, Inflammatory Polyarthiritis, Hashimoto Thyroid, Fibro and now maybe Sjoegrens. At this point i'm not really sure.LOL

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    I have lupus and polomyositis rheynauds myligia migraines asthma osteoarthritis barrotts esophegas and i am glad to have found this site. Bonita

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    Well as alot of the member's know i have Raynauds/systemic Lupus/ SLE/ sjogren's disease and more.

    When i was told i had raynauds that was'nt to bad i thought i can cope with this with creams and refering being cold well i've been like that all my life and my hubby agreed to heating when i needed it more so i manage with it quite well to say it affects the skin bad.
    When i was told what i had otherwise, when i got home i actually said to my hubby i only need diagnosis of cancer which follows through my dads line and they've hit the nail well because raynauds is one thing but the rest a total nightmare to wake up to, cramped up in pain, spasms where you need rubbing to ease it, joints swollen with pure pain and i look at myself now 42 going on 90 and 3yrs back i hardly had any affects, it creeps up on you that quick overnight, i feel now like a bombs been dropped on me.

    Then when you do mention it to someone else and you get the answer (oh you do look well) it makes me want to say have it, as i've never wished illness on my worst enemy

    MARI EXCELLENT THREAD
    Last edited by Peridot20_Gem; 04-13-2011 at 07:43 AM.

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    I guess I could answer this myself since I started it.

    It seems that once I started getting diagnosed (finally) the ball kept rolling!

    I have now been diagnosed SLE and Discoid Lupus, Trigeminal Neuralgia (I agree with Rob. This is the one that I am in greatest fear of. Duration is not the longest but the pain puts me on the floor), Raynaud's, Vasculitis, Fibro, IBS, Migraines, High Blood Pressure, High Cholesterol and my Factor VIII and Factor IX are very high which means that my blood tends to clot too quickly (there is a question if it is from Antiphospholipid Antibody Syndrome but we have enough going on so that is on hold).

    Other than the TN pain and for those that have MS, having one AI is not much different than having 10. AI diseases tend to overlap and most of the time they can't tell where one disease ends and another begin. I say this because as your list grows your panic often grows. Try not to worry. It's going to be OK
    Last edited by tgal; 04-14-2011 at 06:06 AM. Reason: Because all the fine folk decided to add ALL health problems not just AI *LOL*
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    I have SLE, Raynauds, myositis, vasculitis, and possible Sjogrens. Biggest problem lately has been the vasculitis and myositis. Overall Raynauds is usually my biggest issue though with all the ulcers I get on my fingers. I have alot of joint pain in my hands and knees. Muscle weakness in my arms especially. Brain fog has been a big problem lately. The reason I say possible Sjogrens is because even though I have dry mouth and eyes and positive anti-RO antibodies which is apparently a sign of it my doc only says to "watch" for it.
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, InterstitialLung Disease, GERD, Myositis, Vasculitis, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 10mg Norvasc, Nitroglycerin Patch, 20mg Prilosec, 10mg Flexeril, 4mg Medrol, 81mg Asprin.

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    *THUMBS UP* for starting this. I think you are talking about this thread that I started.

    Official DX'd: IBS, Diabetes, Sarcoidosis,
    Possible DX's Noted In Chart: Psoriatic Arthritis, MCTD
    Been Tested for: Celiac, Gluten, Lyme's, Lupus, MS, Who-Know's-What-Else.
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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    I have M.E ,sjogrens,Fibromyalgia,asthma,lockjaw at times (hey maybe getting 3 teeth to put in yaaaaay not a bridge-molars)depression n anxiety,insomnia,ibs,acid reflus and a huge question over the lupus hahahaha...dont ask hahahaha oh n migraines yaaaaaaaaaaaaaaay such a catch lol.xx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

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