New diagnosis of long term problem

    • Anonymous
      May 24, 2007 at 3:20 am


      I kinda feel bad to be so frustrated with my physical condition but to have nothing as horrible as some of the descriptions I’ve read. I wonder, though, if the acuteness of the problems recounted at least got treatment. Right now, the doctor who told me of the suspected MF diagnosis gave me nothing in terms of possible treatment because the exposure to whatever caused me to develop the GQ1B antibody was years ago.

      This is what has devastated me. Suspicions for the last 4 years went to myasthenia gravis and MS. Only in the past 6 months has my current neurologist looked into CIDP and GBS but since there is no other abnormality other than the presence of GQ1B he is thinking this is MF.

      My first incident of diplopia was in 1999. My first significants problems with one leg occured in 2003, with problems with fatigue and walking following later that year into the next. I have had a number of falls/accidents doing routine things (e.g., I felt back into my cat’s water dish just from opening the refrigerator door). I still can drive and see “normally” but only by turning my head significantly to one side. I wasn’t even aware of it until an eye exam in 2003.

      Has anyone else here had a slow/gradual development of MF? Has anyone here been able to get some form of treatment despite the condition existing for months or years before diagnosed? Is the doctor withholding the potential for treatment for reasons of insurance costs? Should I bring that topic up?

      I do not understand how I can have relatively mild symptoms and not be considered a good candidate for medical intervention of some kind. It seems to me he wants to wait until I’m “really” hurting, which to me means that I’m even more damaged that I am now.

      Does any of this make sense?


    • Anonymous
      May 24, 2007 at 9:46 am


      if your lp & ncv conclude active gbs antibodies in your blood, which from what you posted seems likely, then you need ivig. if cidp, which also seems likely, you will need it on an ongoing basis. have they run the lp & ncv? where do you live? take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      May 24, 2007 at 12:45 pm

      I’m not sure what you mean by lp and ncv. The neurologist told me he ran tests for mitochondrial issues of names I don’t remember. He said he was considering GBS and CIDP but then after the EMG shifted to MF because that test “was in normal range.” It would seem to be that should be good news but he had nothing to offer in terms of treatment. And here I’ve been waiting for years for a diagnosis in order to have something offered me in terms of treatment. This is the source of my great disappointment. All he offered me was a 2nd opinion, which seems more about the diagnosis than any ameliorative treatment. It is devastating to me to be told I have no prospect of improvement because there is no treatment for me. It’s as in I should have done something years ago and had no way to know what that was then.


    • May 24, 2007 at 1:58 pm

      LP is lumbar puncture or a spinal tap. NCV is a nerve conduction velocity, if you had an emg, you probably had this test done at the same time. Good luck, Dawn Kevies mom 😮

    • May 24, 2007 at 2:10 pm

      Sorry, forgot something. I do not think it is an accurate statement for the Dr. to say there is no treatment. If you have cidp and your symptoms continue to worsen, then that is a current demylienation and ivig can help. As I understand it, ivig does not work after a long period of time if it is gbs, because the progression stops after a certain time and the lasting efects felt are residuals (that is a whole other tricky topic) Understanding the different variances, treatments and dx is so confusing. Seek other opinions for sure, if your current Dr. is advising you to seek another opinion, then I would. At least he has the common sense to recognize that he may not know the answer. We were not that fortunate, our first two neoros. mis dx my son, his dx was that it was a psychological issue that happens to boys around the start of school. Yeah right! The second dx was a common mis dx I am learning, cmt, I did not like that dx either and found the neuro we currently go to. Good luck and keep searching till you feel comfortable with the dx and the treatment. Dawn Kevies mom 😮

    • Anonymous
      May 26, 2007 at 11:33 pm

      Hi again,

      I never had an lp but you’re right, I probably had the other item. It seems the mf diagnosis is the basis for the assertion that I will not be helped by IVg.

      I have been reading about acupuncture and other forms of nontraditional treatments that might be helpful. I came across a gentleman from NZ who said he has had 2 bouts of MF and the 2nd was overcome through taking shark liver oil. A letter posted on this site also mentions someone talking about a bad case of mf where the doc said the situation was hopeless. That person was helped by talking shark liver oil along with collostrum.

      I wonder if anyone here has tried this or something else.

      The site I saw was on