AnonymousMarch 29, 2007 at 6:38 pm
Been awhile since i have been here. was diagnosed in aug with cidp. now i have a friend that has been sufferering simular symptoms for several years and when i told her to ask her doctors about cidp they all tell her she cant possibly have it that she doesnt have enought symptoms,but she has alot of the same symptoms i have plus some others. she is wanting to know if there is anyone out there that has ever had facial tingling that also causes her to get chill bumps on her legs at the same time? also at night while sleeping her legs become almost paralysed and sweat so badly that at first she thought it was a problem with incontinence.she started wearing depends just to find out and it proved that the problem was her legs that were sweating. she doesnt know where else to turn since the doctors wont even discuss cidp with her,she has been to vanderbilt hospital a few times and one of her doctors wants her to go to the mayo clinic for testing but her internist thinks that will be a waste of her time. if anyone has any suggestions we both would appreciate the help.
p.s she is progressively getting worse
AnonymousMarch 29, 2007 at 9:36 pm
It is my opinion that your friend knows her body better than anyone and is going through all these things. Rather than listen to a doctors guess….I think I would go with the other doctors suggestion to go to the Mayo Clinic if that is possible. Get a few more opionions and let them get to the cause…I would not even try to guess what it could be unless I had a medical background…could be many things. The stress caused by self diagnosis can be hard on a body and soul too! Tell your friend that we are on her side and hope she gets someone to listen to the complaints before making a Rx. Someone that will do a follow through with tests that will atleast rule out what it is not! Then approach the results with determination to come to an educated conclusion!
AnonymousMarch 29, 2007 at 11:04 pm
Doctors are only human is there is only so much that they can possible know. The “[SIZE=”5″]and one of her doctors wants her to go to the mayo clinic for testing” [/SIZE]. I would definitely agree that the Mayo Clinic may be the best answer.
One of the doctors I saw recently said she had heard of GBS, but had never heard of CIDP. The bottom line is get to a place that at least has doctors who know what CIDP is and know how to diagnose and treat it.
AnonymousApril 3, 2007 at 1:19 am
Mayo sounds like a decent idea if a highly credible neurologist isn’t available near to you.
Your friends’ symptoms (the ones you listed) could be indicative of many disorders including MS, SLE, Neuroborrelia (Lyme) or other systemic neuro-degenerative diseases.
MRI of the brain and spinal tap in addition to complex immune panel (T cell, B cell, IgG levels, T cell lymphocytes, neopterin, ANA, C reactive protein, sed rate) seems warranted.
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