I see neurologist tomorrow.... UPDATE

Discussion in 'The Watercooler' started by timer lady, Nov 25, 2007.

  1. timer lady

    timer lady Queen of Hearts

    & I'm on pins & needles (really bad joke - sorry). Either everyone is satisfied with the treatment course, neither impressed with my level of improvement or at least status quo & a consideration of adding a chemo drug to take out my immune system; or we move on to more invasive testing (i.e. cerebral arteriogram & brain biopsy). Personally, I'd like to hear that the current treatment course is taking care of things.

    Unfortunately, that doesn't seem to be the case. Or maybe I'm too impatient. For one thing, I'd like a definitive diagnosis - at this point the neurologist, rheumatologist, infectious diseases doctor & my GP are all treating symptoms. Mostly because they are stymied. And if you're that stymied I don't think you should be digging about in my brain or taking out my immune system. It's fragile enough as it is on the prednisone.

    The latest & greatest considerations by neuro doctor & rheum doctor is myathenis gravis or CNS primary vasculitis.

    Probably just stress.

    Results & symptoms fit many disorders that no one will say with authority - this is it!

    Isn't that special? Guess I'm just a bit tired of the poking prodding; I'm tired of just how homebound I've become; how little sleep I get. Just 6 months ago I was a vital 50 y/o woman on a golf league, taking piano lessons & caring for a home & a couple of tweedles. I want, at the very least, a portion of that back.

    Please keep a good thought that the treating doctors have the wisdom to continue treatment. That my health maintains at this level; I'd hate to start slipping back.

  2. Hound dog

    Hound dog Nana's are Beautiful


    I'm praying they figure out for sure, once and for all, what is going on.

    Years ago when we were trying to figure out why Travis kept slipping backward neurologically the doctor decided to blood test him for everything possbile. It was a just in case sort of thing, even though doctor couldn't see how the boy couldn't possibly been exposed to at least 50% of what they were testing him for.

    His testing came back normal. And although I was grateful he didn't have any of those things, I was grateful to the doctor for reaching where others wouldn't think to go.

    It wasn't long after that when we dicovered the polycythemia was the culprit, causing strokes. But if the phlebotomist drawling Travis' blood hadn't mentioned how thick it was..... it wouldn't have triggered my memory about others also saying how hard he was to drawl because of how thick his blood was.... Which made me ask his neuro about it.... Well, we'd probably not found the cause for many years.

    Keeping body parts crossed for you.

  3. Marguerite

    Marguerite Active Member

    Hang in there, Linda. I hope the neuro decides to go conservative for a while. I agree, too many people sampling bits isn't always helpful. But don't be too upset by symptomatic treatment - sometimes it's the best policy, even when you know what the problem is. It's symptomatic treatment that has done the best for me.

    If it's myasthenia, it can be hard to diagnose for sure (a blood test for AcCh receptor antibodies should be done, but it does sometimes come back negative) but a Tensilon test should be fast and definitive. It IS something for a neuro to do. I've never had a Tensilon test, they have never been sufficiently suspicious of MG to do it to me. The effect of it if you DON'T need it - it can affect your heart rate for a few minutes, slow it down. I'm not sure on that one, it's such a short-acting test it may have absolutely no effect on the heart. But if you DO need it - you will suddenly feel alive, energised, strong - but only for a few minutes. It's a fascinating test.
    And if the Tensilon test is positive (ie you suddenly feel good for a few minutes) then it means you're going to be given some pills to take regularly. There are some side effects, but if you follow directions you should be vastly better off than you have been with some of the other things you've been on.

    mother in law has MG. She's had it since she was in her teens. Very slowly progressive, in her. It's very treatable, very manageable.

    Don't get me wrong, but I do hope they find it's MG. The only better news would be for you to wake up in the morning completely well again, with a written guarantee on the pillow saying you will never be sick again.

    Let us know how you g et on.

  4. Wiped Out

    Wiped Out Well-Known Member Staff Member


    I too am praying they find out what is going on and hope they will decide no more poking and prodding is necessary. :angel: My hope is that you can start to regain what you have lost.

    by the way, I'm glad your sense of humor is in tact-pins and needles, neurologist-yep it's still in tact :rofl:
  5. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member


    I will be praying for you today. Sometimes when we see a particular childhood illness wiped out or other advances in medicine, we forget how truly complicated and "new" we are to really knowing the body, brain, and soul.

    I don't think your docs truly know what is going on so they treat what they can. Perhaps they are just as leary as "poking around" as you are.

    Huge, huge hugs and lots of prayers. Please let us know as soon as you return.

    :angel: :angel: :angel: :angel: :angel: :angel: :angel: :angel:

  6. busywend

    busywend Well-Known Member

    Fingers crossed today, Linda! I do not think they should go in, too risky. But, I do hope they continue on their search of diagnosis. Perhaps a specialist clinic in another area should be called in? Are there any 'experts' nearby?
  7. mum2JK&TH

    mum2JK&TH New Member

    You are in my thoughts today Linda :angel: I hope you hear something promising (((HUGS)))
  8. TerryJ2

    TerryJ2 Well-Known Member

    Good luck! Wish I could help.
    I've got my fingers crossed.
  9. Mattsmom277

    Mattsmom277 Active Member

    Positive vibes coming your way that you get some answers and some solutions. I am in the symptom treatment state as well and the frustration is enormous although logically treating symptoms is better than being unheard or untreated at any level. I expect (knock on wood) my answers/diagnosis in late January. I know if that doesn't happen as expected I will really be in a bad state hearing that I have to just continue as is and keep the poking/prodding going on. I'm dead tired.
    Neurology is such a difficult area if you don't have a diagnosis screaming in your face with test results. It can be so obvious and proven that it is a neuro issue and then you end up like me, and so many others, in diagnosis limbo.
    Wishing you the best!!!
  10. timer lady

    timer lady Queen of Hearts


    Mayo Clinic is 70 miles away - it takes forever to get in. And I'm not "acute" enough to get an immediate appointment. I had an appointment with UM physicians for next month. That doctor is going on sabbatical or taking personal leave; that appointment has been rescheduled until February of next year; I am on the cancellation list for the next available appointment.

    I've considered driving down to Rochester & trying to get admitted to Mayo through their ER on a really bad day. husband & I have decided it's something to consider over the holiday vacation or sooner if necessary or my health takes a sudden turn for the worse.

    It's a frustrating situation - humbling. I'm learning through this however.

    Thank you for all the good thoughts - I'll be leaving in a couple of hours. I'm off here to take a nap before I go.
  11. Sheila

    Sheila Moderator

    Pretzel position assumed for you.
  12. Star*

    Star* call 911........call 911

    If you were someone in that doctors family - where do you think he would put them? You're no less of a person - Do what YOU NEED to do to get YOU well. Someone sitting in a doctors office scheduling appointments has NO CLUE how badly you hurt. They get numb to it. You hurt, - GET SOME HELP - before you call someone in on CHRISTMAS DAY ER appointment at the local hospital.

    Sorry you are in such a shape.

    Best wishes
  13. busywend

    busywend Well-Known Member

    So? How did it go?
  14. crazymama30

    crazymama30 Active Member


    My husband has been having severe chronic pain for the last year and a half. It is very hard to not know why you feel the way you do, and I hope you get some answers. It is scary to do medical treatment by braille, as I call it
  15. TerryJ2

    TerryJ2 Well-Known Member

    My mom was cared for at the Mayo. It's an awesome place!
    If your body can stand it, try to get to the main level of the office bldg, where they have the marble floors and the pianist. And if you go to the basement, they have a computer bank for pts to look up their conditions. It's a very neat svc. You can use it for email... for free. I never saw anyone using it for more than 1/2 hr so people were very respectful of their time limits.
    Good luck!
  16. timer lady

    timer lady Queen of Hearts

    My neurologist appointment lasted almost 1.5 hours. He once again went over my entire hx; over the last month he had been doing research & asking for & receiving add'l records of mine from the past couple of years for comparison. He consulted with a neurologist from Mayo Clinic as well.

    Saying all that, neuro doctor is convinced I have Susac's Syndrome. He & the consult at Mayo feel this is the track to follow - it fits.

    There is still vasculitis to treat.

    Game plan: brain biopsy & cerebral angiogram are both off the table for the time being. Updated MRI (scheduled for Wednesday), see my opthamologist (sp?) for something specific requested by neuro doctor. Go back to my audiologist for an updated hearing examination. Updated labs (tomorrow).

    See neuro doctor first week of January. He, in the meantime, is working with the neuro doctor at Mayo Clinic to get me in ASAP. As this is a somewhat uncommon syndrome it may get me in quicker than normal.

    The prednisone treatment will continue (at high dosages - sigh). The question as to further tweaking my immune system is up in the air until I get to Mayo Clinic, though neuoro doctor may consider IVIG (intravenous immunoglobulin) treatments if necessary before being seen at Mayo.

    It sounds like neuro doctor found a consultant Mayo neuro doctor to check in with until I can be seen.

    Neuro doctor is convinced this has been an ongoing issue for at least 1.5 years though everyone called it stress until I ended up at the hospital in July & then again in August in physical crisis.

    I don't necessarily like what I'm being told though it could be a lot worse. There is a treatment path of sorts to follow though this is one of those rare syndromes that have little to go on.

    I appreciate your prayers, body twisting & such - I thought of you all as I sat in neuro doctor's office while he & his secretary were setting up appts here & there for me.

    It was somewhat amusing (as my memory has been affected & I have a good deal of confusion every now & then) hearing neuro doctor tell his secretary to write down everything for me & then to give me an add'l copy to keep on hand. Neuro doctor handed me the envelope of information & asked me to give a copy of it to husband for safe keeping. If you saw my husband's office you would be ROFL. :rofl:

    My heart is a bit lighter this morning - I'd like to say there is a spring to my step but get real, I'm using a walker! :smile:
  17. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member


    naturally I had no idea with Susacs Syndrome was. I did a google search and just spent 10 minutes reading an article in the american journal of pediatrics (http://pediatrics.aappublications.org/cgi/content/full/114/1/276). Interestingly, 85% of diagnosis'd are woman and the most common factor was oral contraceptives or estrogen replacement therapy....

    Sounds as if your neuro is wonderful, having the nurse write everything down for you and already contacting Mayo. The IV was mentioned in the article as a course of treatment. I imagine that also means a few days in the hospital for you Linda. I know you won't look forward to that.

    Linda, I hope you are able to get into Mayo soon. Your attitude is wonderful - you keep up that smile and attitude!!

  18. busywend

    busywend Well-Known Member

    Well, it is something. I had never heard of it, so like Sharon, I read up on it (thanks for the link LDM). There is a plan now. I can imagine that is doing wonders for that spring in your step! That darn walker is stopping it. But, it is there. I can tell!

    Fingers crossed this treatments shows improvements for you. Sounds like it would be pretty quick results!
  19. TerryJ2

    TerryJ2 Well-Known Member

    Wow, well, that sounds like a starting place. (I had to read up on it, too! And I'm going to show my husband to see if he's ever heard of it.)
    I can imagine the interaction between you, husband and the dr with-the extra set of notes! LOL.
    Well, your sense of humor is intact.
  20. hearts and roses

    hearts and roses Mind Reader

    Well, Linda, I am so glad that at least you're moving in a more positive direction. Your Neurologist sounds very good and I'm so glad you're in contact with Mayo. All of that is excellent news. Count me in as one of those who had no idea what this is, reading up on it now.

    My allergist has his medical receptionist sit in at the end of every visit with every patient and write everything out for them - on carbon paper - and gives the patient a copy and one for the file. I was so impressed by that! My allergist has awful handwriting and sometimes I'd get home and have to call the office to see what he has prescribed and at what intervals. So kudos to your DR for making these lists for both you and H.

    Sending more hugs and prayers~