I've been extremely sick since March but I don't seem to be followig the typical path of this disease. I got hit with what was thought to be encephalitis (never had any flu like symptoms) but that never got officially diagnosed- only based on symptoms. I immediately lost about 50% of my cognitive function, memory and became badly dissociated.
I also developed POTS, neuropathy, screwed up sleeping cycles, headaches, nausea, bright light sensitivity and the biggest one- extreme exercise intolerance. But here's the weird part which no one has been able to explain to me; If I overexert at all it leaves me with permenant brain damage. Every time I have an "episode" after overexertion which may take as long as 4 days to hit me (usually happens while I'm sleeping; bad nerve pain, racing heart, headache, and a severe reduction in brain function) my brain function reduces but NEVER comes back.
I have been on a constant downward slide now for 7 months. Physically my muscles will eventually recover (even tho I'm consistently worse now than I was in the beginning) but my brain never does. Also, it's the same part of my brain that was effected by the initial infection- my limbic system. I am so dissociated and have slipped so far from being able to feel reality that I'm bordering on psychosis. I can't feel time, where I am in the world and my entire life prior to this is so far from me it ony feels like a concept- my brain cant even grasp it.
Anyway- my question is- the one symptom I barely have any of is fatigue. My energy isn't great but it's not too bad. Trust me- I WISH I had fatigue instead of this brain damage. Upon reading stuff about M.E. tho; namely hfme.org and Dr Byron Hydes website it seems that I fit exactly into this criteria: such as overexertion causing permenant disease progression and lack of fatigue. Also, brain damage being the central symptom.
I read tho that "real" ME has to be caused by an enterovirus. I have seen Dr Endlander in NYC and the only enterovirus he tested me for was coxackie and all were negative. I did test positive for HHV6, EBV, Parvovirus B16 and M Pneumoniae. If this is caused by one of these for me and not an entero does that mean I have an chance of recovery from this? My diet is perfect, I lay down all day now and do DR Enlandrs protocol but I still don't get better. I've never seen or read about anyone who's brain symptoms/damage was as bad as mine and progressive like this. Is there any way of knowing which ME I have and if there's any chance of recovery? Because as of now things look very bleak and I'm desperate for some improvement.
Oh and BTW, I had an MRI done which came back clean so I will be going for a SPECT scan next week. My other doctor I saw told me I probably have neuro inflammation which has never gone down and that combined with lack of blood flow to the brain is causing this. Whatever it is I'm living in misery. Can anyone resonate with this?
I also developed POTS, neuropathy, screwed up sleeping cycles, headaches, nausea, bright light sensitivity and the biggest one- extreme exercise intolerance. But here's the weird part which no one has been able to explain to me; If I overexert at all it leaves me with permenant brain damage. Every time I have an "episode" after overexertion which may take as long as 4 days to hit me (usually happens while I'm sleeping; bad nerve pain, racing heart, headache, and a severe reduction in brain function) my brain function reduces but NEVER comes back.
I have been on a constant downward slide now for 7 months. Physically my muscles will eventually recover (even tho I'm consistently worse now than I was in the beginning) but my brain never does. Also, it's the same part of my brain that was effected by the initial infection- my limbic system. I am so dissociated and have slipped so far from being able to feel reality that I'm bordering on psychosis. I can't feel time, where I am in the world and my entire life prior to this is so far from me it ony feels like a concept- my brain cant even grasp it.
Anyway- my question is- the one symptom I barely have any of is fatigue. My energy isn't great but it's not too bad. Trust me- I WISH I had fatigue instead of this brain damage. Upon reading stuff about M.E. tho; namely hfme.org and Dr Byron Hydes website it seems that I fit exactly into this criteria: such as overexertion causing permenant disease progression and lack of fatigue. Also, brain damage being the central symptom.
I read tho that "real" ME has to be caused by an enterovirus. I have seen Dr Endlander in NYC and the only enterovirus he tested me for was coxackie and all were negative. I did test positive for HHV6, EBV, Parvovirus B16 and M Pneumoniae. If this is caused by one of these for me and not an entero does that mean I have an chance of recovery from this? My diet is perfect, I lay down all day now and do DR Enlandrs protocol but I still don't get better. I've never seen or read about anyone who's brain symptoms/damage was as bad as mine and progressive like this. Is there any way of knowing which ME I have and if there's any chance of recovery? Because as of now things look very bleak and I'm desperate for some improvement.
Oh and BTW, I had an MRI done which came back clean so I will be going for a SPECT scan next week. My other doctor I saw told me I probably have neuro inflammation which has never gone down and that combined with lack of blood flow to the brain is causing this. Whatever it is I'm living in misery. Can anyone resonate with this?