I can not emphasize enough to try acyclovyr in massive doses example 800 mg every 4 hours. I went thru doctors for years and tests for everything. Nothing found. I can knock out all my problems in a couple of days by using tha acyclovyr. It will take you about a week to knock it out the first time. I feel your pain try it. Doctors know close to nothing when it comes to viruses. I even went to all the big Phila ones. Try it please.
the type of anti body for mg was binding. the emg showed slight abnormal - but still in normal ranges
eeg done many years ago, i was told no sign of sezuires - that is all info provided
i think it is very possible i have mg
however been told pain is not part of the illness
i wonder if the pain could be related to prolactinoma - because part of the pituitary appears missing and my growth hormone is low [no growth hormone treatments] and my free t4 is low [normal tsh so no sythroid]
but then you have the encephalitis factor too
could it be that i am a mixed dx and will not be a clear cut case of any condition and the best i can hope for is the treatment of my symptoms
how do you communicate with dr's when things are like this - how do i avoid being seen as somatic [that has currently been ruled out, but fear if i push for more info that dr's will reconsidered that]
have a wonderful holiday [sorry, but a answer to this confusion would be the most wonderful gift for me and mine]
Dear Mary:
Sorry to hear about your problems. Which MG antibody types do you have? You may be one of the unfortunate few who have two different processes occurring at the same time. Since mestinon helps, it may be from the MG. It might be that you have a cholinergic deficit from another reason that the mestinon is helping with. I can't tell, but the EMG would help with the diagnosis of MG. The part the early life encephalitis is playing in you symptoms is difficult to tell. If you had herpes encephalitis and your temporal lobes were affected, then some of the symptoms might be related, such as dizziness, mental problems, etc. What does your EEG look like? However, by your description of the brain MRI, you not telling me that the temporal lobes are abnormal. So, the encephalitis may or may not be playing a part in your symptoms. I am sorry I can't be more exact but without examining and knowing more, I am alittle in the fog. Yes, some of your symptoms might be due to the encephalitis or it may not. Your symptoms do have the flavor or fibromyalgia. But, there is no clear etiology for FMG and so the autoimmune findings of MG may or may not be part of the symptoms your experiencing also (if the diagnosis of MG is made by EMG and binding or blocking antibodies).
Sincerely,
CCF Neuro MD
Mary my opinion is take massive doses of accyclovyr. I have almost exact symptons and get rid of them all and be back to normal in a week.No Dr can find the virus but MRI shows demylation and of all the symptons the ringing in the head is the worst. Even your personality will come back. It is hard to believe but it works.