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Thread: Complicated: No diagnosis

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    Default Complicated: No diagnosis

    Hi everyone, I have not posted since May. At that time, there was the possibility of a diagnosis of a 'drug allergy'. I am here to let you know I've been in the hospital, I have had multiple blood draws, and eight skin biopsies and the doctors do not know what is wrong with me.
    The main problem at first, was the 'rash' systemic all over my body, I also developed it over my eyes and upper cheeks. I have lesions down my throat, on my esophogus and in my voice box. I've been on 4 rounds of prednisone, when I go off prednisone, the rash comes back with a vengence and my eyes swell and my throat feels like it is closing.
    The first biopsies(came back as eczema non-specific) were not good because I was on prednisone, so I stayed off prednisone for 7 days(I was so sick) they took 3 skin biopsies. The two on my arm showed, psoriasis, and the one on my leg had 3 different pathologist opinions, one said the biopsy showed lupus, one other possibility was paraneoplastic dermatosis.
    To say I am frustrated is such an understatement.
    Six months of feeling so sick. I now have 7 doctors trying to help me. They are frustrated too. My derm dr has invited me to "Grand Rounds" at Mass General Hosp, in Boston, where there will be 30 to 50 doctors to discuss 'me'. Of course I will go, there is no question.
    Just to refresh your memory, I have been diagnosised with MS for 19 years, I have had positive ANA at 1:40 negative at 1:160, ANA HEP2 pattern is speckled, CRP High Sens is 3.3,C Reactive protien is 3.2, the daDNA ab was negative at 1:10.
    I have developed swollen lymph glands on my neck as of 2 days ago, I am taking Ibprophen and I think went down a little but still visible.
    If anyone has imput I would appreciate it. I am feeling down and confused. Catrinky :(

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    Hi Cat,
    I am sorry to hear that all of this is happening with you. Have they checked you for Sjogrens Syndrome. I am wondering, because of the speckled pattern ANA. Have they run a SSA and SSB test on you to see if they are positive. I believe that you can get some rashes with Sjogrens as well as with Lupus. I hope that they can figure out what is happening with you. Please keep us posted ok. We all care very much for you and hope that you get some help.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

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    Hi Catrinky;
    It has been a while since we heard from you and I, too, am so sorry to hear that you are going through so much. I have a question, if your symptoms subsided while on Prednisone, why does you doctor not keep you on a low dosage (with perhaps another immunosuppressant) in order to keep your symptoms manageable? You mentioned that each time you stopped the Prednisone, your symptoms re-appeared. I can understand the need to stop the Prednisone for the biopsy, but why were you not put back on the drug after the biopsy?
    I agree with Kathy about the possibility of Sjorgen's and rashes (if they are not due to Lupus). Please keep us posted and let us know how you are, what your doctors have prescribed and how how things go at "Grand Rounds".

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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    Hugs Cat,

    Hope they get you sorted out soon. Sorry to hear you've had such a rough go of it. Keeping you in my thoughts and prayers.

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    Catrinky -
    So sorry to hear of your health problems...I agree with Saysusie about the prednisone...could you go back on it?
    Also, I live in Boston as well, and you know that Mass General is one of the best hospitals in the world...and are responsible for many of the prgress made in lupus. Maybe that Grand Rounds is exactly what you need!! The best of the best residents all pondering over you!!
    In the meantime, howeer, I would try to get your symptoms treated ASAP
    Good luck and let us know how you make out...
    Lauri
    For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

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    Thank you so much for your responses, your concern is very uplifting to me.
    On May 7th the SSA(RO) cut off : 0.404 and the SSB(La) cut off was 0.789, which they interpreted as negative.Basically alot of the blood test come back negative, except the ANA. Unfortunately, I don't have all my print outs of my blood test, I have asked for them. Since May 7th I have had multiple blood draws.
    I just stopped prednisone yesterday, that was the 4th round. I think the derm dr wants to find out a diagnosis, and the prednisone is masking alot of the test. Trust me I'd rather be on prednisone, I am so uncomfortable after stopping, by the 7th day I can't even open my eyes, ( I can get into see the dr anytime when the flare comes back). I will ask the dr about Sjogren's syndrome. I am not afraid to tell her that I look to the internet for support, I mentioned 'connective tissue disease' at my last appt. and she said no..(don't ask me right now what her answer was) I did have my daughter taking notes for me. I have cognitive problems with MS....so this can be very difficult for me. Again, thank you I appreciate you input and look forward to communicating with you, hopefully with a diagnosis. xoxo :?

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    Dealing with all of this on top of MS - you are truly inspirational...Hang in there..the answers are out there, and soon you will be back on your meds..
    You are in my thoughts and prayers tonight..
    lauri
    For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

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