I'm not sure what my symptoms are adding up to

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sneakuh7

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Greetings. I'm a 48M, and I've been having some real bizarre things happen in the last few months. I originally suspected MS (you'll see why) but with this past month I'm curious if anyone has presented like this. I'm in diagnosis limbo and just trying to get somewhere.

This first part, I don't know if it's even related to the rest- it's also apparently entirely sensory. This summer I developed a throbbing pain deep in my face, in front of left ear. I then also developed burning sunburn pain on my left trapezius/collarbone area, which after a while also started happening on the right. Facial pain turned into tingling which spread into cheek, then into numbness which spread into left lips. That has since reverted a bit, now I have minor pain in the original spot, and lip buzzing. GP sent me to ENT, got a CT which showed nothing but parotid atrophy. Saw two dentists who saw nothing wrong in mouth. So I still have no answer for this weirdness; it was at this point MS got put in my radar since I've also had various minor neuro things happen in 3 years, like buzzing and RLS. Also had unexplained insomnia for a lot of the summer, which has since improved.

Two months ago I started developing overall use-fatigue, and bilateral stiff hands. I asked GP if I could see a neuro, and I did a month ago. He asked questions, did a few push-pull tests, and sent me out the door. I went basically asking if I should be wondering about MS, esp with three years of escalating neuro weirdness, and asked for MRI (which I've never had). He disagreed and instead said it's probably due to sleep apnea. I generally disagreed with this since I've had obvious apnea in the past and I've improved my sleep since (and no more daytime sleepiness, which was a big cue years ago), but I don't want to dismiss anything so I agreed to a home sleep test, which I did 2 weeks ago. But in the past month...

So ALS wasn't even on my radar until this past month, and there was no reason for it to be- and I hope there still isn't. But here's why it is now... a week after seeing the neuro (a month ago), I started getting cramping and intense soreness in my left leg. My foot arch, calf, and hamstring always felt like they were on the verge of cramping, and the calf did real bad once where I couldn't walk on it for a couple days. Twitching followed soon after, up and down the leg. The next week, these feelings started in the right leg as well- arch and calf, which also fully cramped once. I ignored it the best I could, which wasn't easy. The second weekend the feelings subsided and I thought I could go for a walk- big mistake, I got massive nerve fatigue in both legs and had to lie down for the rest of the night afterward. I had no idea what was happening, nothing I'd been doing would justify the exhaustion or cramps.

Continue on to two or three weeks ago, and the cramps stopped; the twitching is way down. I still feel weird walking, esp in calves, there's a weird sensation there I can't quite elucidate... but the terrible soreness left. And what happens? Both of my arms start getting the same thing as legs did before, like whatever it was there just moved on and up. Cramps for no reason at all in left triceps, right bicep. Just lying on a desk it would cramp. Meat of forearms would hurt upon use, and back of right hand would hurt upon using a mouse, even if only for a moment. And I also had a pure-exhaustion moment like I did with my legs- but this time it was in upper body. It makes no sense to me. So that's where I'm at now; legs are still easily exhausted but at least don't feel hyper-sore anymore; but arms, esp forearms, just ache upon using and lifting any weight at all. It's driving me crazy. I've left 3 msgs for my neuro in the last month and I have yet to speak with him. I've asked GP to help investigate but she just says ask the neuro.

So. I guess my main question is, has MND ever presented like this to anyone? I will say I have not "failed" in doing anything yet, it just causes a lot of fatigue and aching upon use. If not, would any of the enlightened folk here have any idea what I should be chasing? I almost feel like the fact that it's affecting so much of me in such a short time (the face/trap thing was a few months, but the arms/legs are only the last 5 weeks or so) might be a "good" thing. I still have MS on my radar mainly because of the face thing, but I just don't know anymore. I know covid could cause widespread muscle aches, but I've had no respiratory problems at all (and a neg test halfway through the face issue thing). I've had a million blood tests including a bunch of immuno tests (iga, igm, celiac, sjogrens, etc) but all clean.
I've stopped exercising and stopped taking my only med (simvastatin) because I don't want to chance making it all worse. I've yet to get any MRI or EMGs since it "wasnt warranted" before. I'm just frustrated... and admittedly a little worried.
 

lgelb

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I don't see ALS in this, nor any reason to stop exercising or taking your statin. Has the home sleep test come back? Were you tested for Lyme?

If someone really suspects MS, they will order an MRI, and if they suspect something an EMG could show, they will order an EMG. You have the right to ask if either is appropriate. You also have the right to find a new GP is yours is too quick to turf.


Best,
Laurie
 

sneakuh7

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I have appt with sleep specialist in 3 weeks, so I assume I'll find out then. I know the company who gives the test does not discuss the results with patients.
Looking over all my labs, I'm not sure I see one for Lyme, at least nothing under "lyme" or "elisa". I do see ones that I believe are for sjogrens, celiac and lupus. Do you know what name a lyme test might be under? (SS-A, SS-B, IgA, IgG, GDA, ANA, HepC, La/Ro, all normal)
 

sneakuh7

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Some things have been happening which are bumming me out, but still don't know what to think. I was curious about arm strength because of my issues in hands/forearms. As a test I just wanted to try a single set of bicep curls, using the same weight I was able to do 3x9 with two weeks ago (but haven't tried since). Left arm, did eight, was satisfied and stopped because I didn't want to risk any soreness. Right arm, by the time I got to six I had so much pain I had to stop. It centers at the bottom of the bicep by the inner elbow; I cannot tell if it's the tendon or the muscle. I do have this same pain in the left but it didn't stop me from the motion.
In a vacuum I'd write this off as just a local arm issue, but with pains like this bilaterally in all four limbs (focused in thumbs, back of hands, forearms, foot arches, calves, inner elbow), I don't know what to think.
When in bed, any time I'd wake to grab a pillow or move legs, whatever gets used feels like precramping and just twitches afterward. Both hands, arms, feet. I can't rest feet on one another or they'd cramp. I'm incredibly stiff upon waking, and the twitches/precramps continue in my feet and calves throughout the day.

So... I keep seeing that failure just happens, and without pain, but I'm clearly having pain, and with all four limbs affected I just have no idea what's going on. I guess I'm just still wondering if anyone presents like this. I suppose in any case I should try and push for an EMG just to know one thing or another.
 
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