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lyme, lupus, ms???

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    lyme, lupus, ms???

    This week, I go for my first neurologist appt. and am petrified. Although I have been having symptoms for 25 years, I will only give some background on the last 7.

    2005 - face goes numb, primarily on left side for 6 months. ENT says nothing wrong with me.

    2006 - dx with lyme disease and treated.

    2007 - no vision in left eye. It was a Sunday. ER said detached retina and scheduled me for surgery the same night. The eye surgeon was unhappy about being called in on a holiday weekend, peeked in my eye for about 1 minute, and declared I had an occular migraine.

    Since 2005, have had bouts of severe fatigue - so severe that I lay in a recliner and can hear, but can't even open my eyes, right leg and arm numbness, pins and needles in legs, mouth sores, hands and feet cramp up in weird positions, "charlie horses" in stomach (already had gallbladder removed), neck pain when bending head forward, joint pain, muscle pain, intolerance to heat, night sweats, can't stand anything touching my legs in bed...I could go on forever.

    Was sent to a Rheumy in 2006 who stated there was nothing wrong with me. MY GP thought I had chronic lyme. Although uncomfortable with this dx, I went to a famous lyme doc who stated I have had lyme since childhood and gave me massive amounts of antibiotics for 4 years.

    In January, I told my GP I was fed up and wanted more testing. I have now been dx with lupus. This explains the joint pain and mouth sores. Also had brain MRI that showed 4 small foci in left occipital lobe and 1 in posterior left parietal cortex measuring less than 5mm each. Cervical spine was negative. My GP said these results were consistent with chronic lyme.

    Beginning in February, had 3 neck epidurals for the pain when bending my head with only minimal relief.

    For the last 6 months, have had difficulty voiding. It was not until I was unable to void at all, that symptoms were taken seriously. Urologist tests show a flaccid bladder or something like that and I have to self-cath. Now both GP and urologist say I need a Neurologist.

    I am currently 54 and am concerned that although I have had symptoms for so many years, that I will be summarily dismissed because of my age and because I do not have balance issues. Also, with such a myriad of symptoms, I don't know how to self edit when talking to the neurologist.

    Any advice would be greatly appreciated. I just don't know what to expect.

    Thanks for listening.

    #2
    Lupus can attack the brain as well as any other part of your body. Having this as well as chronic Lyme disease will need to be discussed in detail. If you see a good neuro I would not recommend editing anything out concerning symptoms but I would keep it succinct. When the problems started, the initial symptoms, etc., some neuros prefer a written overview. You might want to try that.

    Best of luck to you on your appointment!

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      #3
      neuro visit

      Thanks Cougar for your help. I came prepared as you suggested and it really helped. I had my "nutshell" symptoms, along with a notebook including all lab work and specialists reports neatly divided and in chronological order. She surprised me by looking through each section.

      Even so, I doubt she believes it is MS. Luckily, I had all my labs (my GP was very efficient - therefore, she didn't order any labs.) She agrees I have Lupus, and doesn't believe Lyme disease is any longer a factor.

      She ordered VEP's, Baer and Thoracic spine MRI. I have the last of these tests today. Since I am now 54 - even though symptoms began in 30's - she doesn't believe I have MS. The brain lesions she discounted to age, and prior use of tobacco. She stated I have significant muscle weakness on my right side, although made it sound like I wasn't really trying, i.e. "Is that really all you can push/pull?"

      The one symptom she could not "write off", is my bladder issue. I have to self-cath now. I doubt that without the urology reports she would have given me a second look. She did state that bladder issues are uncommon with Lupus and she would need one more positive test to dx MS.

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