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My story, Hoping for answers... Please help.

Posted In: Medical Stories 7 Replies
  • Posted By: ktpenn
  • June 21, 2009
  • 00:22 PM

I am at my witts-end and am hopeful someone will provide me w/ the feedback that will help me find answers. Here's my story. I am a 27year old female, who was actively going to the gym, working as an RN, and no significant medical problems, with the exception of high cholesterol.
About 1 month ago, I woke up w/ feelings of heavy/weak limbs, tingling to the right side of my body, and diarrhea (unsure if related). I was experiencing chronic urticaria intermittently, which began about six months ago, but now occuring daily. As days progressed, my body became unusually and extremely fatigued. I started getting sharp pains in my neck shooting down my back that has gradually become a consistant overall (especially lower) back pain. I have had low-grade fevers almost daily over the past month. I get numbness/tingling sensations sporadically throughout the day. I do have decent days and "flare-up" days where I can barely feel strong enough to walk because my body is stiff, heavy, and tight. Recently, I have been experiencing indigestion (unsual for me), blurred vision, and sudden nausea. As time goes on I feel the symptoms progressively get worse. These are the treatments I have already received: MRI of brain (normal, no leasions); MRI of cervical spine (4mm hemangeoma, insignificant). Battery of labwork, including Lyme, which was negative (although I don't trust general Lyme testing, w/ an increase in false negatives, and believe that area needs to be investigated further). My labwork was WNL, w/ the exception of a POSITIVE ANA 1:160, Nucleolous Pattern. I have an appt w/ a Rheumatologist this week, assuming to rule out autoimmunde d/o's. I have already been to a neurologist, who did nerve condution testing and basically ruled out a "neurological problem" and said the Rheumotologist can take it from here. I did take a course of Predisone that was very helpful w/ the symptoms but I dont want to mask the symptoms, I want to know why they are there! I don't think I can manage feeling this way much longer, and I would truly appreciate any feedback. Thank you so much.

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7 Replies:

  • You said you had high cholesterol. Are you on any cholesterol lowering meds? The side effects of some of those medicines can be horrendous. Joyce 12
    Joyce 12 3 Replies Flag this Response
  • Thank you Joyce for responding. I was taken off of my cholesterol medication when the symptoms first began because that was our first thought. Symptoms have not subsided since.
    ktpenn 6 Replies Flag this Response
  • My daughter is 25 with similiar symptons. She has been diagnosed with RA at the age of 20. She has been out of work for 5 months now. She has muscle pain all over, shooting pains in her arms and legs, diffuculty walking, etc. She has had all the tests that you have had and they all came out fine. The doctor did a spinal tap recently and we are waiting for the results. They are checking for MS and Transverse Mylitis. Her primary also suggested that she could have Fybromialga. It is very difficult to deal with and you are not alone. Hopefully there will be some answers and help soon.
    Anonymous 42789 Replies Flag this Response
  • Thank you for the support. I am getting a full Lyme Disease work-up as well from a Lyme Literate Doctor. He is also testing me for several viruses, my hormones, adrenal function, etc. I recently began developing facial twitches and my body is deteriorating more and more everyday. Good luck to your daughter .. I feel the frustration.
    ktpenn 6 Replies Flag this Response
  • I think you are on the right track going to the Rheumatologist.As I'm sure you know, that nucleolar pattern of your ANA titer is commonly seen in scleroderma. Are you sure you are experiencing urticaria, or could it be sclero? I've recently been diagnosed with a host of auto-immune issues (SLE, Sjorgen's, Reynaud's and even Fibro). I can really relate to many of your symptoms. After 20+ years of not knowing what was wrong or how to treat it (being told it was all in my head), finding a good Rheumie has been the best thing ever! Unfortunately with auto-immune, sometimes treatment of the symptoms (i.e. steroids) is the best you get. I've been placed on Plaquenil in the hopes of some prevention of symptoms. I don't know the drugs out there for Scleroderma, but I'm sure they have something-- if that's what this is. Good luck to you, I hope you find the answers.
    Harmonium 322 Replies Flag this Response
  • I am not saying you have a problem with your b-12,but please check out the b-12 thread and start at the last page and read backwards a little bit.I have taken the supplements along with a couple other vitamins mentioned on that thread and they have helped my wife and i to live alot more comfortable,please check it out,there are alot of other people on there with the same things you are going through.Hope you feel better soon.
    shortstack 22 Replies Flag this Response
  • Thank you harmonium and shortstack for replying.My B12 was checked and WNL. But I went to a DO, who is checking out more in depth levels of my vitamin levels. I am sure the urticaria is pure hives and not sclero, but I am still awaiting several results. This whole process has been awful, and it's so hard not to throw in the towel. Thank you for the support.
    ktpenn 6 Replies Flag this Response
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