s So I saw the cidp specialist tuesday and he sayS its not cidp or gbs causing me to be numb from my hips down, choking and swallowing and falling. Thing is he did an emg on my left leg and compared it to one done on my right leg. He says ive got a severe case of some type of neuropathy but its not this.. i dont know what to think, everything pointa to gbs/cidp. He says theres no doubr that i had gbs but that was in the past. Im using the walker again and everything now. I dont know what to do. Hes referring me hack to my neurologist recommending a bunch of labs to run and suck but i think shes run most if not all of them.. ive just been crying because i need answers
I recall you saying you had bypass surgery. Your body may not be absorbing what it needs. I have malabsorption issues that contributed to my neuropathy. I always see bypass as one of the causes. What are your b12 levels? Are you taking methyl B12? It has to be taken on an empty stomach. Check your D and make sure you take D3 while your waiting on tests. IVIG, steroids and others prevent the antibodies from attacking but Alpha Lipoic Acid helps prevent more damage if the antibodies get to the myelin by cleaning up the oxidation. Ask your doctor if you can take it. I take 600mg x3 daily and it helps. There is an ALA clinical study in phase 2. I know it's easier said then done but try to stay preoccupied with something while you wait, stress makes it worse.
My b12 level was 1200, I've always been good bout taking my vitamins, I even take vitamin d once a week because it was low last year, I take the prescription strength.. I'm pretty sure the tests he wants run were run by the neuro (copper b1, etc) but we'll see, the neurologist is still waiting on the paperwork from him. I saw her briefly for a migraine friday, she came in on her day off to see me. I know its not diabetic neuropathy too because I've never had an a1c over 7. Soo my numbbers never have been that bad.
Have you had a lumbar puncture?
No he said he didnt want to put me through unnecessary tests
That is not unnecessary. It will give you a real answer. I think you need a second opinion from another neurologist, too. There is a version of CIDP that is assymetrical, but the name escapes me right now.
Do the LP. You deserve a definite answer.
Please find a new neurologist and have the spinal tap. All my other tests came back normal and I was told a lot of it was in my head. After seeing my oncologist, who sent me to a great neurologist, did I finally get answers. She suspected two different disorders and the spinal tap confirmed CIDP.
Did your gbs peak at 28 days? Maybe you can make an appointment with a center of excellence. They are more knowledgeable about the atypical types ( which lots of us are), and then if you still disagree with your neuro you'll have an appt. in place. A backup plan may help you feel 100% a little bit better.
The nearest COE is in Tenn I believe and I dont drive. I wish I could. I'm gonna wait til the neurologist gets info from the neuromuscular/CIDP specialist and see what all tests they wanna do and if the symptoms get worse I'll be off to the ER