Oh boy. Where do I begin? Let me just preface this by saying the Neuro CMV is still somewhat of a guess. It was the only abnormal test result after EMGs, full-body MRIs, and every blood test you could possibly think of… at least outside of infectious disease tests. Since really none were done.
1) Intense bouts of fatigue that would hit me like a bulldozer on a dime. I'd buckle forward and begin sweating fatigue would last a full week then just stop.
2) Aching armpits and sides of ribs. Pain and aching up cervical spine, swelling sensation up back and over top of head. Migraines.
3) Muscle twitching kicked off. Full body fasciculations. Ice cold hands. Burning feet. Severe joint pain in hands. Couldn't steer car without pain.
4) Calf muscle locked up hard. Stayed locked for 2 straight months. Ball of left foot painful. 40 years old and no longer able to walk around the store. Felt 90 years old. Fatigue, aching spine, aching leg, muscles twitching and pulling everywhere.
5) Intense burning and aching in thigh muscles that only dissipated with exertion. Felt like every cell in my body was being invaded. Oh wait that's exactly what CMV does.
6) Stabbing nerve pains all over body randomly. Waking up at 4am with a start, body and mind racing. Every night. Became torture as was not able to get more than 5-6 hours of sleep.
7) Waking up gasping for air. Sleep apnea. Sleep paralysis with hallucinations. Cognitive decline. Unable to speak the ingredients of my desired subway sandwich while ordering it. Dropping things constantly. Freaked the hell out by all of it. Believe me.
8) Testosterone, Estrogen, Cholesterol, and Vitamin D all began to decline. T dropped from 550 to 280. Estradiol from 23 to 6. Vitamin D from 45 to 25. eGFR a from 105 to 71 in a period of 3 months. To this day if I take even 500 IU Vit D I get immune inflammatory reactions all over the place. I recovered a significant amount of my function back by going on Androgel and restoring my Testosterone levels. I'm very unhappy about losing 35 points off my GFR though.
I've written some shitty posts on here as many of you know. I apologize for that. I've been through 3 years of misery and didn't get any help from doctors. But I did get told I was imagining things and should see a psychotherapist. So you can imagine my opinion of doctors at the moment.
I didn't require an answer. What I did want was someone who was as emphatic about searching for one as I was. I found out very quickly that the med community simply isn't equipped for situations like mine. If it's not obvious, and doesn't fit into a narrow list of criteria, it simply doesn't exist. Go home. This is why I had hoped set on an infectious disease specialist. I thought if anyone would be trained to do thorough checking, it'd be the guy who's specialty includes hundreds of possible pathogens. Alas, he did the least checking.
The acute phase lasted roughly 12 months, and it's been an ongoing battle to keep "whatever this is" suppressed. Lifestyle changes were the only thing that helped.
My symptoms worsened as my CMV IgM (acute indicator) rose, and improved in a perfectly linear fashion as the IgM finally began to drop. It was so exact in fact, that I predicted right down to the week when I would be symptom free finally. We'd begun tracking it and saw the IgM dropping "x" points every month. I knew I'd be below the "positive" upper limit by a certain week and when I got there, not only was I nearly all better, but the IgM came back neg.
This all started after a quadruple course of HAART for post-exposure prophylaxis. Yes they put me on AZT too. Hadn't seen a doctor in 15 years prior. Been sick as a dog since the day I popped the first pill. Dallas Buyers Club, anyone? Plenty of HAART specialists shut their doors and told me never to speak ill of the meds, or imply they were at fault. Some very odd reactions to be honest. I'm guessing maybe viral reactivations, immune system overload. Who knows. Acute CMV? No idea.