Reply To: New doctor finding him strange

Anonymous
January 22, 2014 at 12:36 am

I think you are correct and my I am realizing that my continued going undiagnosed with not much help has been what is causing me anxiety and to have panic attacks. I had to think back when I wasn’t getting any better after my neck surgery and I was going from doctor to doctor and nobody would tell me anything and I realized the same feelings came over me.

I need the spinal tap first and although that might not be the factor in the end diagnosis, it is a start. Continuing to do the same test over and costing me money however isn’t getting me anywhere.

I am hoping the neurologist I have had since 2006 will have a good reason for just not fallowing through and I can continue my treatment with him. I probably didn’t list all my symptoms because at times it’s hard for me to remember them. I have problems remembering basic things and I may go to do something and forget what I’m doing. Or can’t remember when I’m trying to type something exactly how to say it. Even talking with someone at times I have problems. I have muscle spasms and extreme pain. The spasms are both in my feet my muscles above my ankles, my hands. I wake up with just incredible pains in my arms, sometimes my thighs. It’s painful to walk, I have bladder control issues, and flaky skin at times. Mostly on my face. The pain mostly is in my lower back, buttocks, thighs, back of my legs now, hips and my arms now. My joints often hurt too. My feet hurt but I know that is neuropathy because I had been previously diagnosed with neuropathy.

I think I just wanted to blame or say something wasn’t right for me at the moment. If my neurologist doesn’t come through when I go to see him I”m really not sure what I’ll do.

Maybe I don’t know what questions I should be asking? I know you are right though GH in what you have said. I have had these symptoms though for over a year and a big worry of mine is becoming that I can never make any plans to do anything and I can’t go on trips and I don’t have a future right now. I can’t continue to go from one neurologist to another as I had to with my neck. It was exhausting until I finally found the neurologist that I have been seeing like I said and he finally figured out that I had the cervical spinal cord injury.

I have tried to study the disease as much as possible and know that the spinal test could still not come back positive and you need a good neurologist to fight for you in getting treatment if he still believes you have CIDP. As far as I know everything else has been ruled out. I have been to a orthopedist for shots in the hips. Thats was in case it was bursitis, acupuncture, epidural steroid shots into the lower discs just to see if that might stop the inflammation going on and I don’t think that would really treat this so I”m not sure why that was done, and a neurosurgeon to make sure I didn’t have any problems that he could find.

I’ve had blood test for hepatitis and HIV and I knew I didn’t have them but sure rule that out, all the B vitamins and the C-reactive protein to check for inflammation and that was inconclusive because it could have been a false positive because I’m on a pain patch. So I don’t know what other test that can be done? So all my blood work was fine except the C- reactive protein.

So I think I just need a good neurologist that is willing to fight and and get what ever needs to be done. The neurologist that did do my EMG did specialize in auto immune diseases and he was the one that diagnosed me with the CIDP. Unfortunately for me, he took a leave of absents. He worked along side my neurologist.

If you can think of anything that might help or questions I should be asking, please tell me. You cannot offend me as I think I have already been the offensive one. Thanks you for your input already.