If I dont get answers I am going to scream!!!
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July 1, 2009 at 11:16 pm
I have had it. I had GBS (acute) in 2002 they also found a cervical syrinx. One year later the back of my neck started burning and my legs went weak and numb. I went to the ER right away and recieved an LP that came up clear. I went home with benzos and I was better in one week. One year later my legs went numb again. I was dragging my feet and crawling up the stairs. I was hospitalized and they did another clear LP and an MRI that came up with lesions on my spinal cord. they said it was probably MS. then another MRI with contrast did not show active lesions so they said it was not MS and sent me home with no referal. my GP gave me a referal to an MS specialist who refused to see me because she said I was too sick and should be in the hospital. after getting my Insurance co to advocate for me she finally agreed to see me. when I met with her she took one look at my MRI summary and said I had TM and to check myself into the hospital for solu-medrol treatments. so thats what I did. meanwhile my symptoms are getting worse now the weakness is accompanied by burning symetrical pain and also pain like frostbite in my ankles, burning pain behind both of my eyes and a frankenstein gate. I was in the hospital for 24 hrs when the neurologist released me and actually told me I should see a psych doc. the hospital GP refered me to a neurosurgen for the syringomyelia who then said not likely the cause and refered me to another neurologist who again liked the MS theory. I at this point had been sick for 6 months and had tremors from the smallest fatigue. then out of no where it went away. I still saw the neuro and she had me do a VEP and an MS panel both came up negative. I suggested a neuro- muscular doc and an EMG for CIDP because of my GBS history but she scoffed. I gave up because by this time it had been a year. For five years the only problems i have had is pain that I believe is Fibromyalgia. and also some other pain that feels arthritic with flulike symptoms and a fever and then after I sleep it goes away each time.
This Last May the pain and weakness has come back not as bad yet. I saw a new neurologist who said i could not have MS because I have no lesions on my brain (what?) so he sent me to a EMG man. I just had my legs done today. the neuro muscular man would not give his impression of my results yet he said CIDP was not Relapse Remitting (what?) but rather walked out of the room and sent the nurse in with another MRI referal with the words W/WO contast. So I guess that was my answer. We are moving back to the CNS. I Hate doctors. How can I ever trust a word they say when no one is on the same page. does anyone have any advice on how to talk to morons with MDs? -
July 2, 2009 at 12:12 am
The only advice I have on speaking to docs is to find one that listens. You seem to be giving them alternative ideas, if they do not listen it may be time to find another. About the tremors, some meds can cause them, I think steroids might, try to search that. Have you had any ivig? If not, you could ask for an ANA test (though not always conclusive unfortunately) to r/o out Lupus (your fever, flu-like feeling led me to that possibility)Sorry I cannot be of any real help! Good luck to you.
Dawn Kevies mom -
July 2, 2009 at 12:24 am
The only thing I can suggest to see if you have CIDP is to have a nerve biopsy done. That way they can look to see if there has been demylation happening. I had one done.
It is hard to get a doctor that takes the time to listen, hopefully you get answers soon.
Take care,
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July 2, 2009 at 7:53 am
Are you seeing a specialist? Has anyone suggested a neurosurgeon? Often teaching and research hospitals are your best bet when you have as many neurological symptoms as you do. Has anyone ever suggested Chiari 1 Malformation? An MRI with and with out contrast should be done. Ask them if they are looking at the base of the brain.
I was diagnosed with GBS in ’04. Went to University of Wis. Hospital for answers to worsening symptoms in the fall of 08 and found the Chiari 1 Malformation diagnosis. Like yourself, I heard MS many times until they finally got it right. Find out if the Dr.s you are seeing have a knowledge of Chiari. Like GBS, it is uncommon
Had surgery last Oct. and doing much better. Would be glad to share what I know if you’d like. Let me know how things turn out. -
July 2, 2009 at 9:07 am
Where do you live? You should contact the GBS/CIDP Foundation to see if they can give you a referral to a dr in your area.
I’m really very sorry you’ve had such a horrible experience with dr’s.
Kelly
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July 2, 2009 at 6:52 pm
Tara it sounds like you are here in Toledo!;) Are you my double? Please don’t give up, stick with it. I’ve been doing it for almost a full 4 yrs-getting closer to a dx for my paralysis events everytime I go to U of M. Keep in mind, Drs are still practicing-they aren’t Gods yet. If you could give us information on what area of the country you are in, maybe someone can give you their opinion of a good dr to look into. There are good ones all over. Stay positive, you might get a dx soon. Take care.
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July 2, 2009 at 10:04 pm
thank you for your replies. I have a brain and cervical mri w/wo contrast on the 13th. i dont want to say hopfully they will find something because I dont want MS. I was wondering if it is possible for CIDP to go away for 5 years and then reappear?
I believe MS does not sound as likely as CIDP because I already had GBS and semetrical symptoms appeared one year later. when my legs feel weak and heavy they they really feel numb on the inside not as much on my skin as it is in the muscle. my skin gets numb too but its more inside. -
July 2, 2009 at 10:11 pm
by the way I will look into that chiari 1 malformation. I do have a cervical syrinx. I do have neck pain and I have had 7 bouts of BPPV (vertigo) in two years. so its worth a look.
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July 3, 2009 at 3:28 pm
Tara, as you may already know, a cervical syrinx is often the result of Chiari 1
They often go hand in hand. There are some great Chiari specialists out there if it comes to that. But don’t rely on a neuro that does not have the Chiari or SM background.
Please let us know how the CINE scans go. The MRI with and w/o contrast is a good test for CM/SM.
Good luck. -
July 3, 2009 at 5:14 pm
yes the more I read about it the more I like it for what I am dealing with. I just found out in december that I have scoliosis and mild spina bifida I am 34 years old and I have lost almost two inches in height in a short period of time . I cross referenced those with chiari and wow. I do think I am also dealing with something autoimmune because I no longer get viruses like colds and flus not for 7 years and it seems relapse remitting or bout formed but maybe I am getting closer to untangling this mess thank you.
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July 15, 2009 at 10:01 am
I am newly allowed to post on this forum, but have been reading for more than a year…. I have CIDP – but not the typical disease course… if there is one… and have had docs tell me for years that it was from my original L4-L5 disc injury. (had two lumbar surgeries 20 years ago) It is like many docs never see outside the box. If you do not have the text book symptoms, it must not be serious enough to evaluate more carefully. I finally found a great Neuro who has given me a shred of hope, but is often difficult to reach because she works for the VA and only has a private clinic once a week. She diagnosed the CIDP when all the others just shook their heads and gave me pain pills. So keep looking for the right doc, and never, never doubt yourself! Maggie
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