Anyone been to the NIH?My specialists are sending me...Im an enigma! How many of "us" have so many symptoms but labs do not confirm?

Hello friends, I am so thankful to have support pages and groups to turn to when nobody else "gets it". I seem to be an enigma to my many specialists working together @ University of Pennsylvania. My labs show no signs of my rare form of CIDP, EMG is the confirming tool. I also have CVID, I don't get frequent or hard to shake infections, just show low levels of IgG & IgA.

My Doctor suggested looking into the NIH to see if there are studies going on. I've been having infusions for 5 months now and my EMG continues to show my disease progressing.I am also NOW just getting toe drop i my big toes! Will this lead to foot drop?

I have to ask myself, and all of it JUST ME?? Are there others out here that are so hard to diagnosis and treat?? I welcome any feedback.

PS...I have had spinal tap,nerve biopsy,every blood and urine test you can think of,bone marrow biopsy,cat scans,MRI's. Nothing shows up,EMG is only test to confirm my motor and sensory neuropathy ,numbness,pain,fatigue..etc. The list goes on and on! Sorry for rambling, it is very frustrating having so many visable ailments that just do not show up on tests!

Have you had nerve conduction tests?


After 9 neurologist and 4 years of symptoms, all negative or normal tests, and many "maybe" diagnoses, I finally was referred to a movement disorder neurologist at Emory University in Atlanta, Ga. After 2 hours of examining my prior tests, and me, his diagnosis was corticobasal gangliomic degeneration which usually begins in the hands, but mine started with my left leg and foot so it was not easy to diagnose to begin with. There is no cure, of course, and no way to stop or slow down progression. I am scheduled for botox injections in my left toes to see if they will straighten out so I won't stand on them when I try to pull myself up into a standing position (say from wheelchair to sink). The whole thing is pretty depressing. I used to hope I would walk again, but it just doesn't seem to be in my cards. Oh well. Just trying to keep myself healthy otherwise. Wishing you good luck and happy holidays.

Yes,I’ve had nerve conduction with the EMG. That also shows blockage.

Sheryl, I’m sorry to hear of your dx. Mine did start in the hands,with pregnancy. I believe my “story” is in my profile. I wish you the best

I understand completely, I just spent 3 weeks of intensive invasive testing at the world famous Mayo Clinic in Rochester Minnesota. After 3 weeks of testing, they told me the same thing I already knew. I have CIDP. Why it doesn't respond well to IVIG? They don't know, so they will up my dose from once every 3 weeks to once a week. They will also place me on a new drug called Cellcept to see if that helps. My tests came back all slightly abnormal but nothing stood out enough to give them any new ideas. I have low levels of Igm Kappa which they call MGUS, Monoclonal Gammopathy of Unclear Signifigance. They say that it too can cause Neuropothy and along with my diabetes and CIDP combine to form a difficult to control neuropothy. The only test I fail miserably at is the EMG, every time I take it. Like I said, all the other tests come up as abnormal but not horribly so. I feel that these doctors need these tests to give them the answers and can't add two plus two on their own. I had tests done there that I didn't even know existed. Sweat test, autonomic test, sensory test, spinal fluid, bone marrow, nerve biopsy, etc...

I am still awaiting more review to develop a Dx. Was originally dx'd w Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) in February of 2011. In September this fall I went to ER for an obstruction between my stomach and large intestine and the medicals began to discover all sorts of additional problems. It was suspected to be POEMS, but has been mostly ruled out. I now am back at "square one" looking for fresh eyes to figure an accurate dx so we can develop an effective treatment plan. My PC Dr is going to contact Mayo Clinic to see if POEMS may still be a possibility, or what else to consider.

Patience and Faith are my watchwords reverse order! We will figure this out and move forward.

You haven't mentioned whether you've had blood tests for anti-neuronal antibodies. Perhaps you could ask NIH doctors whether those tests might be useful. By the way, my bone marrow biopsy didn't show any bone marrow problems either. One thing that was unusual was that they needed to add a blood thinner (heparin) to my bone marrow liquid samples to prevent clotting. I believe this means that my bone marrow is producing a very large amount of platelets, but that my anti-platelet antibodies are destroying them rapidly, resulting in very low platelet concentrations in my blood. Perhaps testing for anti-neuronal antibodies could clarify whether your neuropathy is autoimmune.

So sorry to hear about your problems. I understand your frustration as well in regards to the testing process.
Have you ever had a QSART test? If I understand correctly,this is one of the “Gold Standard” tests to diagnose CIDP and report on the response times of different sensory nerves to different stimuli to determine if a deficit is present.
I hope you get some definitive answers soon so you can start feeling better.

Will ask for both test!! Thank you!