NeuroTalk Support Groups - Newbie here, probable CIDP

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- - Newbie here, probable CIDP (https://www.neurotalk.org/new-member-introductions/201177-newbie-probable-cidp.html)

Newbie here, probable CIDP

Thanks very much for the welcomes! I've been feeling alone for a very long time and it's nice to be among people who can relate.

I have a demyelinating syndrome with classic symptoms and signs of chronic inflammatory demyelinating polyneuropathy (CIDP) for 6.5 months, though it has taken forever to diagnose. I have been diagnosed with hyperthyroidism, hypothyroidism, peripheral neuropathy, B12 deficiency, hypocalcemia, Parkinson's Disease/syndrome, ulnar nerve entrapment, carpal tunnel syndrome, radiculopathy and benign essential tremor. I've been tried on virtually every Rx. I fall constantly, have severe pain in neck, shoulder, elbows and hands, and my entire body buzzes. I'm very depressed. An MRI showed spinal stenosis and cord compression at C5-6. I got excited that surgery might cure my problems, until EMG showed slowing of the ulnar/median nerves, demyelinating. Surgery wouldn't help.

I did a ton of research and found my symptoms are 100% compatible with CIDP. I'm so frustrated with the slow diagnostic process. I've seen my doctor, a neurologist, a PA, physical therapy, went for an epidural injection but fell on my face, and the idiot PA told me that lumbar strain could cause arm pain and carpal tunnel [ruled out] could cause leg symptoms. :mad:

My own doctor now agrees with me that it's CIDP and wants a definitive spinal tap—to be done by yet another neurologist. My doc is supportive, and pain meds are all that have gotten me this far. I'm just so tired. I'm scared of the falling, being scared to sleep or go out; the dysesthesias, waking up screaming from pain in my elbows, and not knowing when if ever I will get a Dx or treatment. I live alone. I've been in hell for 6.5 months, and don't know how much longer I can hang on.

Sorry for the diatribe. I have had no one to talk to who can understand, so I appreciate you very much. :o best, meghan

Nice to meet you!!

http://dl8.glitter-graphics.net/pub/...awobnqykyj.gif

Meghan,

:Wave-Hello: It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Click on the followinf forum there you will fine some fellow friends to assist you out.

http://neurotalk.psychcentral.com/forum20.html

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :smileypray:

Darlene :hug:

Thanks, Darlene!

And thank you for the hug. It means a lot. I will do some exploring.

best, Meg

Meghan

have your doc push for IVIg treatment for you if your dx is cidp

IVIg = treatment of 1st choice for cidp

I know what you are going thru... I was in you shoes 2 years ago

read posts on PN forum...lots of great info there