New Guy on the Block/Likely CIDP

    • Anonymous
      November 2, 2010 at 11:00 pm

      Hi All, This is my first posting. I’ve had symptoms for years, both my wife and I have said aloud many times that I have neurological problems. Early Easter Sunday I awoke in the middle of the night to go to the bathroom. I fell near the top of our stairs and smahed my ribs hard against the wooden railing. We were both sure I had broken ribs but since they don’t do anything for you in such a case I just dealt with it with vicodin ES, thank God my family doctor had just increased my prescription. That fall was a blessing because it caused one of my other doctors to refer me to a neurologist. I first saw him in May. He is a good guy and seems quite intelligent. I had the nerve conduction velocity test which showed damage to the myelin sheath and nerves and a muscle test where my muscles were poked and muscle weakness was a big problem. Also, tests showed no reflexes and further checking my muscles showed they are getting progressively weaker. Brain scan showed no abnormalities and spinal tap failed to show an elavated level of protein. I have severe pain in various parts of my body, back, neck legs arms, hands, feet etc. and a lot of numbness and tingling. I fall quite a bit now. Anyways, tomorrow I am going to see a lady doctor who is a neuro-muscular specialist that has a rep for being excellent at the University of Maryland. I need to go on disability as I’ve been falling at work too and I get a lot of muscle cramps and spasms. I need treatment deperately and I hope to get a firm diagnosis because from what I’ve read on this forum from doctors and other intelligent people, the tests that have been done in conjunction with my symptoms are definitive for CIDP. Anyone out there please say a prayer for my wife and myself that they make me inpatient, diagnose and begin treating me and write the disability forms out. At work I’m on my feet all day and as tough as I am I can’t take it anymore. Also has anyone had experience going to the University of Maryland Hospital? I would like to hear how it was for you. Thanks, God bless. Johnny

    • Anonymous
      November 3, 2010 at 12:38 am


      I have not been to U of Md hospital system, but I can give you some heads up.

      I truly sympathize with your symptoms, they sound challenging, and i hope you can get a diagnosis and get some kind of treatment. It is hard to guess what you have, there are so many different kinds of peripheral neuropathies out there, some are treatable, some are not. I hope you have something simple like a b-12 deficiency or something like that. Easy treatment. Anyway,

      Be prepared for a longer time getting diagnosed than what you think. These Peripheral Neuropathies (PN) always seem to be tricky for neuro’s to figure out. It took mine several years to get it figured out. You go to the Dr and get tested, hope for an answer, and then they say, “come back in a month.” Then your symptoms get worse and you seem to be at the end of your rope, and they test some more, give you some drugs and say they aren’t sure and say “come back in 3 months, try this treatment.” Then after the next appointment they say they are getting closer and want to try this treatment.

      Sometimes it takes a long time and gets pretty frustrating. BUT, don’t give up. You have a problem and deserve an answer. Listen to what they say and pay attention to the tests and ask questions. The more you learn, the better a patient you can be.

      So, hang in there, and be persistent. Hopefully a diagnosis can be quick, but if not, be patient and learn. If it is CIDP, it will be a big learning curve for you and your family. Share all you can, and get all the help you can.

      Good luck, I hope and pray for the best.

      Dick S

    • Anonymous
      November 3, 2010 at 4:06 pm

      Four years ago, when my CIDP was at its worst, I contacted University of Maryland’s Hospital with respect to help in getting a diagnosis. Through one conversation or another, I was led to believe that UM did not so much specialize in neurological disease and was far better suited for trauma care, cancer, transplantation, and certain other specialties. It took another several months before a recommendation led me to Johns Hopkins where I finally received diagnosis and treatment. The JHH Department of Neurology is both large and well known. Last year, a year where Hopkins was again declared the #1 hospital in the US by Newsweek (and I think we need to take all such “ratings” with grains of salt, because everyone tends to have somewhat different experiences) and their Department of Neurology was named #1 in the country. I do know that I was exceptionally pleased with my doctor and most impressed with everything related to my treatment, which consisted of IVIG given over a course of 18 months. Hopkins has its own protocol for IVIG, which protocol was given to me by a kind nurse at my first treatment and still features some innovations that I have need heard about elsewhere. My doctor is one of the world’s leading researchers on CIDP and is a member of this Foundation’s Medical Advisory Staff. His name is Dr. David Cornblath. If you haven’t already considered it, might I suggest you look into the possibility of care at Hopkins?

    • Anonymous
      November 3, 2010 at 9:43 pm

      i would recommend georgetown hospital and dr. sirdofsky. i did hear (and read) great things about hopkins though. you might want to get more than one opinion.