Just want to know what's wrong with me
 

So I will try to keep this as brief as possible. Five months ago I started having profound fatigue, head "pressure", and ear stuffiness. A week after this I came down with flu like symptoms...more fatigue, low fever, swollen lymph nodes, and feeling generally unwell.

Within a couple of weeks I started feeling a little bit better, but many of the symptoms persisted. I also started getting new symptoms, many of which seemed neurological. Parathesa/tingling on the side of my head, wide spread muscle twithcing, sensations of cold on my skin, and numbness in my hands and feet.

I initially went to the doctor for the pressure I had in my head and ears, and was treated for a sinus infection. I returned many times to the doctor over the next few months, and repeated blood work was mostly normal. My white count was slightly elevated at one point, and my testosterone was lowish. I had many other tests for ebv, HIV, Lyme disease, etc.

Even worse than the physical symptoms are the psychological craziness I've dealt with. I have had varying degrees of depersonalization and derealization that make me feel like I'm living in a dream. I've also had bouts of anxiety and depression like nothing I've ever experienced.

My doctor treated me with antibiotics for a nearly a month at one point and the physical symptoms did seem to dissipate, but I was also doing everything else possible to feel better. Still, the psych symptoms persisted.

Although I am significantly better now physically and mentally, I continue to have symptom flare ups. I find the muscle twitching and tingling extremely disturbing, and the psych issues havn't really gone away. It seems to me like an infection of some kind, because I'll wake up with sore lymph nodes in my neck and ear stuffiness.

I'm just getting fed up, because I thought I was getting better but I've been having a major flare up this week, and I just want to know what I'm up against. The doctor has given up, so any suggestions or advice would be greatly appreciated.

Hi Dandaman, welcome.

When I started reading your story, I was thinking EBV, but you say that was tested. False negatives for Lyme disease are common; I'm not sure about false negatives for EBV. It does sound more like a virus though.

Were you tested for CRP, and did that show anything?

In the weeks before all this started, did you have any vaccines? They can sometimes have impurities that can cause weird virus-like symptoms. These usually resolve in time, but it can take a while.

Any travel?

Doc

First of all thank you very much for the response. I did not travel internationally at all in the past few years, but I have been all around the US in the past year. No vaccines either in the past few years. I'm not sure I was tested for CRP but I'll look into that as I come up with a plan of action for doctors in the next few weeks. My EBV levels were slightly elevated, but I was told that was indicative of past infection.

At this point the only symptoms that persist are bouts of head/neck pressure, random muscle twitching, some tingling sensations in my extremities, cold sensations on my skin, and of course the mental detachment that is very disturbing. Any thoughts on the possibility of MS? I know the lymph node swelling doesn't match up with that, but I feel like that is the only symptom any more that indicates an infection.

Again thank you for the response and any other thoughts you have.

Around the US may be enough; for example (I'm not saying I think you might have this—just an example) in the SW US they have a fungal disease, Valley Fever—relatively unknown in the NE—I'd never heard of it until a couple years ago when I travelled out there, and neither had my doctor. There could be other examples of regional illnesses, fungal, viral, or other.

Another possibility is something environmental (also suggested by neurological symptoms). Any changes/remodeling at home or workplace, etc?

At this point, I'm spitballing to try to help you figure out any clues. Have you tried any of the symptom checkers? CDC? (Might take some searching—it's a large site.)

I wouldn't know about MS, but you're welcome to ask on the MS forum.

If you're still getting better—albeit slowly—that's a good sign; your body is fending it off. Hopefully in a short time this will all be moot.

Doc

Valley Fever can be really awful. My friend got it in AZ while spending the winter there. Funny how the doctors in the nearby town did not think of that. Both she and I figured it out from her symptoms. And when she got home - way up north - they did figure it out and she was treated and her health came back pretty good. It could have killed her and she was really, really sick with it. Never saw anything like it before til I saw her during this. Some people get it and it is not that bad. Nothing I would want though.