false positive tests in person who had encephalitis

[Mary]

it is believed i had viral encephalistis in 1973 at the age of 15, i am now a 42 yr old women.  
i have many labs that come back postive, ana, sed rates, lyme [no active lyme in western blot]. test for the myathenia gravis antibodies -- most dr's feel they may be false postives.
my mri also shows a large archnoid cyst moving brain mass in the left upper front, but also shows a lesion in the basial gangial.[in addition to a prolactinoma]
my personality changed after the illness and i had a complete mental breakdown at 18. i have been able to come back from the mental changes with proper diet and no drinking.
however i have extreme pain in my muscles, ringing in my ears, balance problems and dizzy, speech problems, vision blurring and doubled, sleep with oxygen do to low blood gases and weakness - i would think that it could be mg  ---- but the pain is uncontrolable - local dr said is fms, however will rx the mestinon which helps.
could the pain be related to the encephalitis?

[CCF Neuro[P] MD, RPS]

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

[Ronisundiagnosed]

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.

[Mary]

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]

[Ronisundiagnosed]

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.

[fuzzypuddinghead]

A related discussion, C1 C2 C3 pain, severe headaches + metallic taste = WHATS going on? was started.