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Thread: still no answers

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    Default still no answers

    my doctors are now at the point where they wont order any further testing and they have completely ruled out lupus as a diagnosis. since getting ill in November with aches and pains, fatigue and a transient facial rash i've had several FBC's all normal with no inflammation markers, 3 ANA's all negative & visited a rheumatologist privately who performed ENA panel-negative, 2 C3 and C4 checks (C4 borderline once then returned to well within range), CK enczyme-normal. The rheumatologist said he can say 'with complete confidence' that i don't have anything autoimmune however this has left me in a terrible situation.

    I believe my body reacted to the root canal treatment and the materials used as i became ill immediately afterwards, with further reading i discovered there's a condition called 'multiple chemical sensitivity' which i believe i may have acquired as a result of a trauma prior to the root canal treatment. I got the teeth removed 2 months ago however i've received no improvements in my health despite taking nutritional supplements, eating healthily and exercising when i can. The facial rash i had along with the fatigue and joint/muscle pains made me certain it was Lupus however i experience other symptoms which don't seem to be so common.

    Dizzy spells, all over muscle twitches, eye floaters, pain in ears, ringing/noises in ears, hand tremor, tingling, sneezing, sinus pressure, chest wall pain, nerve pain in head (neuralgia)

    i'm just wondering if anyone with lupus experiences these symptoms? the pains in my muscle and joints also literally hit for a second then could move somewhere else in the body, they don't last for more than a second in any particular part and are never accompanied by any warmth or swelling.

    i'm stuck with a Post-Viral Fatigue diagnosis at the minute which really isn't accurate and i'm just so fed up with life to the point i've felt suicidal recently.

    my symptoms also crossover a lot with Lyme however i really can't see any way i could have Lyme and if i even mention that to my doctor they will treat me like more of a lunatic than they already do.

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    (((hugs)))
    When you're stressed, You eat Ice cream, Cake, Chocolate & Sweets. Why? Because stressed spelled backwards is DESSERTS.

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    I was having a reaction to a medication. The doctor took me off of it a year ago. It often takes quite a while for the body to recover. Give it some time. I'm still trying to recover the strength in my legs a year later, slowly but surely I am getting there.

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    thanks for replying. i just don't understand what lupus pain is like and what else could cause such a similar blotchy facial rash. my pain literally moves around the joints and muscles in my body and doesn't stay in one place for more than a second or 2, it's the same with the twitching. my fatigue is awful and staying awake 12 hours is a constant battle every day. i don't get why all the tests are negative

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    I do not know what the cause of your pain or your symptoms could be. However, Lupus pain does not come and go in seconds and move around the body. As Lupus is a chronic disease, our pain generally lasts for days and weeks and if pain appears somewhere else in our body, it does so while the first pain continues.
    I wish that we had answers for you. I'm sorry that we cannot be more helpful. I do hope that you find a doctor who is willing to give you some answers and some treatmemt.

    Peace and Blessings
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    I see migrating joint pain as a symptom but I don't really understand what it means. With my extreme fatigue and joint/muscle pains as well as the face rash I really thought it was lupus. The rash hasn't appeared for a while now but I have no idea what to do. Does all over muscle twitching tend to be a lupus symptom? I,ll wake up with pain that jumps from a finger to a knee then my chest then my elbow in a matter of seconds then a few minutes later it's gone completely and will appear somewhere else. I don't see what else it can be bar lupus and neither do the doctors unfortunately

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    You may have overlapping issues occurring. Has your doctor mentioned the possibility of arthritis as being the cause of your migratory joint pain? Your other symptoms could be due to an underlying auto-immune disorder, but as so many conditions have the same symptoms, we cannot speculate as to what your underlying condition might be. What you describe sounds a bit like Polyarticular joint pain (pain in more than four joints). It would seem prudent for your doctors keep the diagnostic process open. When trying to diagnose, the following conditions can cause Polyarticular joint pain:

    Viral infection: human parvovirus (especially B19), enterovirus, adenovirus, Epstein-Barr, coxsackievirus (A9, B2, B3, B4, B6), cytomegalovirus, rubella, mumps, hepatitis B, varicella-zoster virus (human herpes virus 3), human immunodeficiency virus
    Indirect bacterial infection (reactive arthritis): Neisseria gonorrhoeae (gonorrhea), bacterial endocarditis, Campylobacter species, Chlamydia species, Salmonella species, Shigella species, Yersinia species, Tropheryma whippelii (Whipple's disease), group A streptococci (rheumatic fever)
    Direct bacterial infection: N. gonorrhoeae, Staphylococcus aureus, gram-negative bacilli, bacterial endocarditis
    Other infections: Borrelia burgdorferi (Lyme disease), Mycobacterium tuberculosis (tuberculosis), fungi
    Crystal-induced synovitis: gout, pseudogout (calcium pyrophosphate deposition disease), hydroxyapatite
    Systemic rheumatic disease: rheumatoid arthritis, systemic lupus erythematosus, polymyositis/dermatomyositis, juvenile rheumatoid arthriis, scleroderma,Sjögren's syndrome, Behçet's syndrome, polymyalgia rheumatica
    Systemic vasculitis disease: Schönlein-Henoch purpura, hypersensitivity vasculitis, polyarteritis nodosa, Wegener's granulomatosis, giant cell arteritis
    Spondyloarthropathies: ankylosing spondylitis, psoriatic arthritis, inflammatory bowel disease, reactive arthritis (Reiter's syndrome)
    Endocrine disorders: hyperparathyroidism, hyperthyroidism, hypothyroidism
    Malignancy: metastatic cancer, multiple myeloma
    Others: osteoarthritis, hypermobility syndromes, sarcoidosis, fibromyalgia, osteomalacia, Sweet's syndrome, serum sickness.

    As you can see, the list of possibilities is almost overwhelming. I do hope that you find some answers. I wish you the bet.

    Peace and Blessings
    Namaste
    Saysusie

    Look For The Good and Praise It!

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    As far as your question to migrating joint pain.

    I could have sore knees for a week- like someone drove over them. Two. Maybe a month.
    Then my knees will feel mostly fine but my hands will feel like they've been hit by mallets for 3 days.
    Then my elbows.

    Sort of moves around and gets better one place but worse somewhere else

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    thanks for the reply. my pain isn't like that but some nights it just jumps about all over my body. lupus seems to be the only thing that fits the description along with the fatigue and facial rash. however some other symptoms seem different to what would be expected with SLE particularly the all over twitching and a host of other symptoms including a sensation of cold raindrops hitting part of my body. unless it's Lupus that's affected my CNS which could be a possibility. i really don't know anymore. i have attached a link to the photo of my facial rash, i'm wondering if it looks like what would be expected with a lupus malar rash?http://i61.tinypic.com/2wrhs1u.jpg

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    The migrating joint pain (I think)could be different for everyone. I just shared my experience and I havent been diagnosed yet either (first rheumy appt is in a few days)

    The cold rainspots I get too. Since I was a teen Ive had tingles on my scalp. When my symptoms flared several months ago, I started getting tingles & cold wet feeling on specific places on my arms & right cheek. Its called Peripheral neuropathy and growing up I was used to it so I never complained much about it. I will say that I recently was given cymbalta for joint pain (it did not help for the joint pain at all) however, the peripheral neuropathy has completely dissipated in the last 3 weeks. No more tingles, no more cold feelings. It should help with nerve zaps too, although Ive never had that.

    Your facial rash IMO could be malar (its sparing the nasal labial folds) but could be due to rosacea or something else too.

    The problem all of us undiagnosed face is that lupus, lyme, MS, porphyria, misc viral infections and maybe 100+ other sicknesses all have vague symptoms that overlap. We end up in this confused boat, being bounced from Dr. to Dr some who brush us off, some whos good intentions could be wrong because the symptoms of all these illnesses are vague.

    If you're not happy with the post viral diagnosis or feel like you're being brushed off then seek a 2nd or 3rd opinion. You NEED to be an advocate for your OWN health.

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