spinal tap normal…now what

    • Anonymous
      August 31, 2010 at 4:06 pm

      Okay, so I got the lumbar puncture yesterday and I got a call early this morning from the nurse saying it was normal.

      My first question is: I have read over and over it takes a few days to get results for this particular protein…can they really have results that quick.

      Second: my symptoms are getting worse and it seems to line up exactly as CIDP. Don’t get me wrong, I would be thrilled to not have it, but I can’t just let the weakness and pain get worse daily and ignore it.

      The nurse said we would discuss next steps at out next appt which is at the end of September. I seriously feel worse daily.

      What would you do?

      Thanks, erin

    • Anonymous
      September 1, 2010 at 12:46 am

      erin,

      yes, results for this test can come back that quickly. I got mine in four or five hours. They tested me right before lunch and I rode home. The Dr. left a message at my house before I got home. I called back before office hours were over he had results.

      There are several neuropathies that have symptoms similar to CIDP. Just because your LP was neg. does not automatically eliminate you. I was just barely abnormal. It depends on the rest of your symptoms and what alse gets eliminated. Sometimes CIDP is a diagnosis of elimination, everything else is eliminated that acts like this, so it must be….. Then they will try some treatments, and depending on how you respond to treatment, that may define the diagnosis.

      Unfortunately, there is no test for CIDP. The LP is probably the closest thing. An EMG and Nerve Conduction Study can show demyelination and damage, which will lead you down the path to diagnosis, or they could do a biopsy and look at nerve and muscle tissue for damage, but that is pretty invasive and presents problems of it’s own. Other than that it is poke, prod and guess.

      But, that is what the Dr.s get paid for. Keep on asking them questions and make sure they are doing the right things. An informed patient usually gets the best diagnosis.

      Dick S

    • Anonymous
      September 1, 2010 at 9:02 am

      Thank you for your response. I was very angry that maybe they didn’t run all of the proper tests. I had read about specifically the “M protein” which I know they did not run, but I guess that isn’t necessary if other protein levels are normal?

      I was also angry b/c the nurse said the doctor would discuss the next steps at our follow up visit which isn’t scheduled until the end of September. I told her I was getting worse daily and she just sort of said “don’t worry, your test was negative” as if all was well b/c the LP was normal.

      I know it will take at least that long to find a new doctor and get a new pt appt so I feel pretty stuck which also creates a great deal of anger in me. I realize I am only at the beginning of this. I don’t know how you all have dealt with the ridiculous nature of the medical world for so long and kept your sanity.
      Erin

    • Ottawa help
      September 1, 2010 at 10:18 am

      Hi Erin,
      It is tough to wait while you are getting worse. The attitude of the medical system in both Canada and the US seems to be wait and see when it comes to neuropathies.

      This is what led us to go to Columbia Neurological Centre. There are 8 such centres in the US and they take it seriously but we had to pay for it ourselves.

      The good news is that once my husband got his loading dose of IVIG the symptoms stopped progressing (after 3 weeks) and SLOWLY they are improving.

      It is hard when you have children .They need your strength. Do you have relatives who can help? Be sure to use them during this difficult waiting period. If you are at all religious- then pray too.

      Kathy from Canada

    • Anonymous
      September 1, 2010 at 9:35 pm

      Everything Dick S said and more.

      My lumbar punctures were normal, my disease process is not normal nor is yours. Call the Drs office and request an immediate appt, not a followup.

      No matter what, find a neuromuscular specialist if not one of the 7 GBS Centers of Excellence.

      In fact, at least two, maybe more, of my EMG/Nerve conductions tests stated “…no evidence of demylination…” however, the nerve biopsy (mentioned above) clearly shows evidence of something.

      In my case, Mayo Clinic Rochester and Northwestern University in Chicago have said they “prefer” a diagnosis of cidp over multi focal motor neuropathy (MMN). Furthermore, they said that my condition may be a variant of cidp.

      So, there is no easy test, there is no simple answer. There is doing what dick s said. Be informed.

      Yes, I had a special form of nerve biopsy. Invasive? Yes, they cut me open and took several lanes of nerve freeway out. No problem, there’s lots of lanes.

      Complications? Yes, it hurt like blazes for a week after. sort of like having a thunderstorm up and down my arm

      Worth it? for me, yes. would I do it again? yes.

      Persevere. Learn. Be your own Champion, no one else will.