Worried about symptoms for the past 4 months

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Allu

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Hello,

I’ve read the sticky thread, as well as almost everything possible online before posting here. Still, I feel like I still have a few doubts and perhaps I could benefit from your insights and possibly a few reassuring words about the symptoms I’ve been experiencing for quite some time. My two neurologist consultations were quite short and I had so much to tell that I left feeling I haven’t asked everything I wanted. I hope it’s still fine to post it here.

I’m a 29yo male from Brazil living in the Netherlands.

Four months ago, I started to become quite sore on my right side after coming back from gym. I didn’t pay too much attention to it, thinking it was okay. However, exactly 3.5 months ago, I was sitting at work and, when I stood up, I realized I couldn’t feel/lift my right foot. This lasted for around 20 seconds. I immediately thought it was just me sitting on my nerve or something of that sort. Yet, it became harder with time to walk normally with that leg from that moment onwards. I also realized I cannot shake my right foot from left to right anymore.

Five days from the leg incident, I started to feel clumsy with my right hand. It felt strange to use it in the lab, as if my fingers were not accurate. From that moment, I realized something was just not right, and I immediately thought it could be MS or ALS. I became desperate, having quite disturbing episodes of mind fog, dizziness, generalized paresthesias, buzzling sensations throughout the body, etc. This lasted for 2 weeks, and only the weakness on the right side remained. Never had anything of that sort again though, and I attribute it to an overreaction to the problem.

I went to my first visit to a neurologist after this, first worried about MS. She did a neurological examination and said she wasn’t worried, but gave me a brain MRI to ease my mind. Turned out it was fine and I was dismissed for “being too anxious”. I asked if it couldn’t be something from peripheral nerves and she gave me an EMG referral for 1 month later.

During this time waiting, I avoided at all costs to read about ALS. I knew the end result, but not the presenting symptoms or the progression, in this way avoiding unnecessary anxiety. Yet, I started developing the following symptoms, which persist until today:
  • Progressively becoming harder to walk with right leg, having to lift it higher to avoid hitting the floor. Pain in the calf muscle follows. I cannot move my foot from side to side anymore.
  • Progressively weaker right forearm/hand. Fingers are stiff (especially middle and ring), pinky and ringer are pulling towards the palm, and middle/ring fingers tremble when stretched. It is especially hard to pick up small things. It shakes everytime I hold something with the right side. Pain in the forearm follows when used for too long. If I tap my right fingers fast, it doesn’t go as fast as the left fingers anymore and I have to stop due to it becoming too slow.
  • Weakness is worse when it’s cold.
  • Fasciculations. Started in calves and feet, but now it’s in the thighs. It happened after the weakness. I didn’t know it was a symptom of ALS and I ignored it for quite some time.
  • Occasional muscle spasms. It happens mostly in the abs and right arm (triceps).
  • Easily fatigued muscles with pain after any exercise. If I do a single pushup for instance, my chest hurts for 2-3 days.
  • Speech problem. It’s a feeling of tightness in the base of the tongue. I cannot pronounce properly the “ch” sound in “much”, or the “th” in strength, for instance.

Finally, in the EMG (2 months ago), they did only the NCS. The neurologist showed me the conduction test and said “look, no ALS, which follows the brain MRI result that we could have seen ALS as well”. I got reassured, but then I decided to study everything about the disease it and saw that these two exams are almost never altered in ALS. I lost confidence in that neurologist completely.

Seeing that my symptoms were not resolving and I wasn’t going to receive proper care here, I decided to fly two weeks ago to another country, where I had a consultation with one of the leading experts in ALS in Europe. He heard my story, tested strength, did a neurological exam, and finally did the needle EMG, poking around 10 muscles on both legs, and the thenar muscle in both hands. He concluded that I had no sign of neuromuscular/neurological damage and gave me an anti-anxiety drug. I got happy at first, but my symptoms have not disappeared or gotten any better. The weakness is getting worse. I feel like he dismissed me for just being too young to have this disease and didn’t tell me to come back later or something like that to not make me more anxious.

Regarding blood exams, they tested all vitamins, electrolytes, thyroid/parathyroid/adrenal function, Lyme’s, syphilis, CK, etc. My only altered blood parameter is ferritin, which is at 504.

Considering all of this, my questions here are:
  • Would it be that unlikely to have these two events on both upper and lower limb at almost the same time in an ALS setting? They also seem to be progressing at the same pace.
  • Is this finger stiffness feeling, together with tremor from stretched fingers of only two fingers, a common symptom?
  • Can this speech problem that I mentioned be anything related to a bulbar problem seen in the disease?
  • As I said, fasciculations occur mainly on legs, but it’s more problematic in the right leg. However, I feel nothing wrong with my left leg, and it still twitches (very fine and small twitches that spread outwards from the initial point). Is it a good sign? I mean, I see that fasciculations usually accompany weakness and atrophy, so having it on the left leg could maybe indicate something benign.

What concerns me more is that, since I am naturally a very anxious guy, people dismiss what I feel attributing to that, but I cannot grasp the idea that my mind could be creating all of this. I worry that I may have subclinical alterations that cannot be seen by a neurological examination or the EMG yet.

With all that said, thank you in advance for taking your time to read it. It’s really unnerving to be going through this without any diagnosis or clue about what could be wrong.

PS: I do not have access to the EMG results, unfortunately.
 

KarenNWendyn

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ALS does not present as you’ve described. Numbness and pain are sensory symptoms and not part of the presentation of ALS. Also symptoms coming on in multiple parts of the body in such a short period of time is not consistent with ALS. You mention speech issues. In ALS, the concern is slurred speech that others can hear. If you don’t have that, it’s unlikely that ALS is the cause of your speech concerns. And then the EMG of “10 muscles on both legs, and the thenar muscle in both hands” showing “no sign of neuromuscular/neurological damage” pretty much hammers home the conclusion that this is not ALS.

Regarding your questions:
I’ve already answered the first and third questions.
The finger stiffness feeling and tremor would not be expected with ALS.
Twitching is common, nonspecific, and meaningless. Ignore the twitching.
 
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