New diagnosis of long term problem

Hi,

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?

Thanks.