Weakness in legs, then arms, etc,

Kind of a long story. I was ill in the 90s across about 10 years time. I was in my 40s. Now I'm age 66.

In the 90s I had relapsing remitting symptoms that resembled MS and CIDP. I was treated multiple times with IV and Prednisone steroids and that helped. I did better in a cool environment. Two of the lumbar puncturesI had showed high proteins and some other skewed values at the beginning, and several later ones showed nothing. And none of the MRIs were positive. I had various other tests. I wound up seeing a multitude of neurologists and eventually it was a dead end. I got better over time.

Later I was tested for Lyme disease with equivocal results. Yet I was treated anyway with 6 weeks of IM penicillin and another doctor treated me other other injections of antibiotics. Whether coincidence or not, I fully recovered and for 18 years I was pretty normal with few signs of further symptoms.

In January of 2021, I was walking in a hallway and noticed my legs both felt weak in the thighs. I could still walk ok, but I thought it was odd. I found a couple times I would walk on a flat carpet and stumble some. It kind of came and went. I mentioned it to PCP and he seemed unmoved by it. (I work out in a home gym every other day for 2 years so I'm in pretty good shape.)

4.5 months later, in May, suddenly I felt weakness in both arms. I could still do things but lifting my arms past horizontal was difficult and the hands would begin to shake from the stress. And you could see the arm muscles twitching from the stress. Back to my PCP who prescribed Cymbalta, which I didn't like because it had a side effect where it was difficult to urinate. So I quit that.

Two days later, suddenly I had what I describe as a flare up where my feet, legs, body, face, head, arms all felt inflamed and I had a lot of muscle twitching in various muscles. As well as a feeling of pressure in the head. I had sensory numbness in my arms/legs/hands/feet/face/torso and top of my head.

I went to a local ER that gave me fluids IV and had me sit around for a few hours and then discharged me. No help.

I called an old neurologist I saw in the 90s. He really didn't want to get involved and all my prior neurologists were gone from the FW/Dallas area. I went home and sat on the edge of the bed feeling bodily terrible. I took a cold shower that helped a little.

Over the next weeks my symptoms got worse. I could only walk in baby steps in short distances. I became mostly a prisoner of the air conditioned house. My PCP prescribed a low dose steroid dose pack that lasts about 5 days. That helped a little bit but really wasn't enough. After three weeks, and having no signs of further help, I finally decided to go to a different bigger ER in Fort Worth. They gave me high dose IV steroids one dose and sent me out with Prednisone high dose prescription to taper off over several weeks.

I sent the blood tests to the Neuro I called weeks earlier and he thought he saw signs of sepsis and that they shouldn't have given me steroids under that condition. He decided to treat me for Lyme disease as he thought the treatment I got in 2002 was insufficient and that it probably came back and prescribed three antibiotics for 4 weeks. Whether or not the medications helped are questionable. I didn't have any Herx reaction to the antibiotics. But after about 8 weeks total, I started getting somewhat better. Although my endurance in the arms and legs is still limited. I can cut my 1/3 of an acre lawn with a self-propelled mower and edge but it is very tiring to me whereas I used to do that work without much effort.

I feel that I'm fully off the antibiotics and steroids for a week but I don't feel like I'm making much progress with endurance. My PCP ordered a head MRI and it was normal 7 weeks ago. I went to Dallas to a famed neurology place Aston Clinic. The office tests revealed little more. I had an EMG/NC test a few weeks later that was fairly normal.

And to be fair, using the word "weakness" needs clarification. In an acute sense, I have strength. The old push pull test on arms/legs reveals a lot of strength. I can lift and 80 lb curl weight. So a better work, even though the instant sense is weakness, is lack of endurance. In other words I can stand on my legs and even do a deep knee bend halfway down. But in my worst time 6 weeks ago, I could only walk about 30 feet with baby steps from the bedroom to the bathroom. If I walked 80 feet to the mailbox and back I would be tired. Whereas 9 weeks ago I could walk a mile. And I tried to drive 68 miles in my car to Dallas. At the 60 mile point, with my left arm up on top of the steering wheel, it got so fatigued, that I had to let it hang to the floor while I let my right arm take over. That was 4 weeks ago.

Safe to say the level of disability I'm feeling at this age seems to be sizably more than I felt in the 90s where I mostly recovered to a normal state

Thanks in advance. Jeff

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