75% sure of what happened....

Discussion in 'The Watercooler' started by timer lady, Jul 26, 2007.

  1. timer lady

    timer lady Queen of Hearts

    to me over the last 3 weeks. The neurologists & rheumatolists both believe (as of yesterday - it could change) that I suffered an a-typical case of Guillane Barre Syndrome, combined with an ongoing case of Polymyalgia Rheumtica & Giant Cell Arteritis. There is still an indication of Rheumatoid Arthritis.

    So the game plan is very high doses of Prednizone, physical therapy, and a very fine eye on the Arteritis because of eye damage that could happen. I will continue using the walker & quad cane as needed. I'm to take it slow & care for my body as it's been battered (according to rheumatologist). The a-typical GBS answers the question of the on-going neuro paralysis on my right side.

    This all happened very quickly - my sed rate soared from normal to 177 in the course of 2 weeks - I was hit hard.

    In the meantime, I will be on here & answer when & if my strength. allows. I cannot type too well & my mind is in a bit slow; a bit confused.

    I'm coping as best I can - my body changed so quickly over the course of a little over a month. I feel the blues some days, the fears of what is to come & what might not heal. I do my best to move forward & use the new tools needed in my life today.

    Thank you for all of your prayers - they are needed & greatly appreciated.
  2. Kjs

    Kjs Guest

    I hope you recover quickly. You are in my thoughts. Thanks for the update, been wondering how you are.
  3. WhymeMom?

    WhymeMom? No real answers to life..

    I can't even pronounce what happened to you, glad you have some answers and a plan to remedy your condition.....we will take your posts however and whenever you can make them.....

    Sending any spare strength I've got.....

  4. Wiped Out

    Wiped Out Well-Known Member Staff Member

    I'm glad you are taking things slow and caring for your body. I can't imagine how scary this must all have been-everything happened so quickly. I am praying daily for a full recovery for you. :angel: Hugs.
  5. Marguerite

    Marguerite Active Member

    Thanks for the update, Linda. The short time-course would fit the GBS. I had hoped the arteritis would be negative, with the biopsy negative (I thought). The GBS and the rheumatoid alone could account for the high ESR.

    If the paralysis is related to the GBS, you should get a lot, most if not all back. But it could take another month before you start to see much improvement. It depends on what stage it is at.

    Did anyone suggest plasmaphoresis to you? I'm a bit out of touch, maybe they don't do it as much anymore. They do have to begin it fairly soon after onset, too, for maximum benefit.

    What you describe does fit auto-immune as well as inflammatory. You need to take things carefully and slowly so your body isn't so reactive. Be gentle with yourself.

  6. timer lady

    timer lady Queen of Hearts


    Myathenus gravis has not yet been ruled out - the doctor's feel that the arteritis is a go because of the damage & drooping to the right side of my face & my eye. I cannot keep my right eye open very long when I'm totally exhausted.

    There are further tests to be run - the biopsy will be repeated again in 3 months. There is somewhat of a concern for my eyesight in the right eye. The rheum do said that with the diagnosis of polymyalgia rheumatica he's 95% sure of the arteritis. He expects the biopsy to test positive sooner rather than later.

    That's why I said the doctor's are 75% sure.

    I'm starting out on 125 mg. of prenizone a day. The inflammation in my body has to come down. The doctor's expect a 3 year course of prednizone but will start to taper it down sometime next month depending on my ESR & CR-P levels.

    The paralysis may be due to the inflammation but the doctor's aren't sure if it will be permanent or not. Therefore I'm learning to use the walkers & cane - if it's a tool I'll need I need to have it down.

    Thanks lady, I'm looking to you for professional advice.

    To the rest of you thanks - it's going to be the ride of my life.

    by the way, Suz - I'm ready for that round of golf now. :smile: I'll even take Sue on at the same time. I expect it will be a big win for you guys. :rofl:
  7. timer lady

    timer lady Queen of Hearts


    They didn't do the plamaphoresis - they used the 3 day IVIg treatment instead.
  8. busywend

    busywend Well-Known Member Staff Member

    Thanks for the update. You take care of you!
  9. On_Call

    On_Call New Member


    Thanks for giving us the update - I, along with all of us here on the site, I am sure, think about you often. The man in our town who was diagnosed with GBS two years ago went through something like a 3-week hospitalization before he was actually diagnosed - the doctor he had told him he had only seen one confirmed case of it before. It is a tricky disorder, to say the least.

    Sounds like you have a great team of doctors on your side.

    Continue to take care of yourself - and do only what you can when you can.

    Many hugs and continued positive thoughts and prayers going out to you. :angel:
  10. Lothlorien

    Lothlorien Active Member Staff Member

    I'm glad they have an idea of what's going on and they can treat it. I know what polymyalgia rhuematic is..I think it a viral thing, but it hits all the major joints, like the shoulders and hips and is very painful, especially if not caught right away. I don't really know what the giant cell artheritis is, but find yourself a good rheumatologist. It sounds like you are going to need one that you feel comfortable with.
  11. dreamer

    dreamer New Member

    I have been told plasmaphoresis has not had great success, from some who have tried it for RA ? My insurance would not even consider it. On the autoimmune disorders group I am in, people have not seemed to have good things to say about it. So, maybe it is not being used very much?
    I do have to say I am still very amazed that I needed a scooter, walker, etc etc for so long and after I changed rheumetologists, well, it has been nothing short of miraculous, in my opinion. I have been able to ditch the scooter, walker, splints, braces, etc. (I do have to say the whole thing has dramatically altered how I view life)

    My sed rates and ANA and RA factor still do come back very very high kind of often, but, my abilities have been a thousand fold better.

    Sending you good wishes, Linda.
  12. Just keep swimming

    Just keep swimming New Member


    Wow, I had no idea of what you were going through! How very frightening for you and your family. I will send up some good thoughts for as full a recovery as possible for you!! Take it easy, woman!!! LOL!!

  13. Terryforvols

    Terryforvols Member

    Hope you get better. I'm on chronic prednisone for Crohn's disease, high doses, then tapers down. I don't know if you are real familiar with prednisone and side effects, but on doses as high as yours are now have caused me to become almost psychotic. The drug can work wonders, but the side effects are brutal. Watch yourself carefully -- that drug can mess with your mind!!

    Best wishes!!

  14. Marguerite

    Marguerite Active Member

    I was fortunate, I didn't have any of the psychosis problems with prednisone. But something to consider - talk to the doctor about taking calcium and Vitamin D. Alternatively (on the Vitamin D front) get plenty of sun (not enough to burn) every day. The darker your skin tone, the more sun you need to get your daily dose. The more you cover up, the more sun you need to compensate. Muslim women in full chador often end up with Vitamin D deficiency if they don't make a daily appointment with the sun in their private courtyard. Even just the hijab wearers - they cover up arms & legs as well, and with darker complexions (olive skin, like mine) you can often miss out on your sun dosage because face exposure needs to be increased (minutes per day) to compensate for lack of skin on arms & legs getting exposed to sunlight.

    Same story for nuns, before the habit got eased and liberated a bit.

    So get into that bikini, girl!

  15. mom_to_3

    mom_to_3 Active Member

    I hope you get better too! I had to take high doses of prednisone for about 6 months for thyroid eye disease. It works wonders for reducing inflammation and pain and for autoimmune stuff. I would take it again for the relief it gave me, but it became a drug I hated taking. The physical side effects are not pleasant, you will be a changed person, and the emotional side effects are something else! I became very hyped up, loads of energy, had a very hard time sleeping and the worst is that it made me very angry or very quick to get angry. I hated that! My family walked on eggshells around me. I felt horrible about it and tried my best to be nice, but man!!!!!!!!!!! It actually helped me realize how some of our angry difficult child's must feel. Oh, and it tastes disgusting!
  16. timer lady

    timer lady Queen of Hearts

    Thank you all - I've been made aware of the physical/emotional side effects of this medication. This is going to be a wait & see kind of thing.

    Marg, let's see me, pale, lily white skin, a body of true substance & a bikini....I don't think so. I have been asked to take the calcium with D & to get the sunshine in the early morning walks.

    Thank you again ladies.
  17. Sunlight

    Sunlight Active Member

    God bless and keep you in his tender healing care.
  18. Suz

    Suz (the future) MRS. GERE

    Ok Linda. I will dust off my golf clubs this weekend. :smile:

    I read on another thread that kt is off on respite this weekend and husband is grilling steaks. What time is dinner? :smile:

    Suz :flower:
  19. Marguerite

    Marguerite Active Member

    Linda, you said, "...a body of true substance & a bikini....I don't think so."

    OK, how about dropping in on us here in Sydney and coming along to our nude beach? Then if anyone dares to comment (and nobody would) you can tell them you're Rubenesque. If it was good enough for HIS models... the bulges only show when you try to ladle them into a swimsuit. Go without and everything looks more natural, much more acceptable.

    A very new rock group rapidly coming up the charts is Mika. They're British, a bit in the Queen mould but very modern, very fresh and new. They have a song on their latest album, "Big Girl (You Are Beautiful)". It's rocky, it's boppy and I love it. It's got lines about wanting a woman with "curves in all the right places". There's a line in the chorus -

    "You take your skinny girl
    Feel like I'm gonna die
    'Cause a real woman
    Needs a real man here's why

    You take your girl
    And multiply her by four
    Now a whole lotta woman
    Needs a whole lot more"

    My best friend can only be tactfully described as large. I'm going to play this track for her as soon as I can - she will love it!

    I'm thinking of making it my new theme song...

    Actually, when I Googled the lyrics I think I caught a link to a free mp3 of the song. Have a listen if you can do it legally.

  20. timer lady

    timer lady Queen of Hearts

    Geez, Marg - I'm all atwitter (:smile:) at the thought of an all nude beach. :redface: Hmmm, not sure - maybe if I have enough of this medication or that in my system, I'd go for it. :whistle: :beach:

    I like those lyrics - will have to check out that song.

    Thanks for the morning giggle! :smile: