A lot of symptoms / Please an advice

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sorin21

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Hi, I’m Stefan , male 36 years old, a lot of trek, play soccer,verry active, live in France, B hepatitis under control 10 years now.

Maybe it's not my place here but I will try to be as brief as possible about my situation:

My problems started beggining may with a headache on the right side and after that I felt a weakness from the knees to foots, a blurred vision left eye, no energy…I go to the hospital to see if it is a stroke but it wasn’t that. They found anemia and 2 weeks later I made MRI digestive tract. They found a gastrointestinal stromal tumor (GIST) 6-7 cm but no methastasis. The take it out, anemia come back since then, I take Imanitib to prevent that’s come back…

Since may when all startde, and they continue after the surgery the neurological symphtoms increased randomly. What symphtoms I have now (they come randomly butt all day almost):

1.Fatigue,tiredness, poor stamina - I have power in hands, legs…I can walk 5, 8 even 10 km , climb stairs, lift bags but I’m almost tired…I can’t stay on my right toe.
2. Twitching of the muscles (hands, legs, back, abdomen) - no atropfy detected by neuro and no tongue fasciculations
3. Tingling, numbness, random burning pain all the muscles, shooting pains in the thighs; Sometimes if I lift hand and hold it for couple of seconds I fell pain…
4. Muscle pain or cramps, traveling or localized
5. Jaw pain or stiffness
6. Muscle spasms; small limb jerks
7.Tremor but very rare and mostly after an effort
8. facial numbness, pain, tingling
9. Disturbed sleep - too much, too little, early awakening
10.cold hand sweats
11.Headache mostly on the left eye side
12. Pain of the joints, neck, or back, traveling or localized
13. Tendon and ligament pain or stiffness
14. Neck stiffness, neck pain
15. Ears/Hearing: buzzing
16. Eyes/Vision: blurry vision mostly left eye
17. Chest pain
18. Mood swings, irritability, depression
19. Unexplained weight change - I losses 5 kg in 5 months
20. Difficulty in thinking
21. Difficulty with concentration, reading
22. Difficulty with speech - no slurred speech- I mistake words or difficulty with word-finding
23. Exaggerated symptoms or worse from alcohol - One I drink a beer before sleeping one time I I felt burning sensation pain ans I could’nt sleep all night.

What I did:
  • MRI cerebral one month after all started and before surgery - come ok
  • A lot of blodd test after the surgery - all come back normal
  • EMG of muscles left side - 3 on leg, 3 on hand - OK
  • I’ve seen 2 neurologist: (1 neurologist with experience in MND disease) - both thinks it’s anxiety stress after surgery, the Imanitib who gives a lot of neurological sympthoms etc. and no other issue
  • I will have a comple MRI spine on 1.12.2022

I had covid 3 weeks ago…2 days I didn’t felt no neurological sympthom…it was strange for me…
What do you think? I will continue to see with the doctors of course.I also was thinking to do a Lyme test.
I don’t understand why so many random symphtoms…I know also that a lot of thins come in the same time so I must be optimist and fight but any advice will be great.
  • Thanks!
 

ShiftKicker

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Here are two links that may be helpful to you:



You have been cleared of ALS by your neurologists and show no signs via EMG. You have a very long list of non-ALS symptoms as well. While it must be worrying for you not to know what the trouble is, your doctors and your test results mean you can at least eliminate ALS from your list.

This forum really can't provide you the information you are seeking with regards to what it might be, as we are not diagnosticians nor a general health forum. I really do hope you will get some answers soon as you work with your doctors.

Take care
 

affected

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Sorry for all you are experiencing.

this is the key
  • EMG of muscles left side - 3 on leg, 3 on hand - OK
  • I’ve seen 2 neurologist: (1 neurologist with experience in MND disease)
Clinical examination and EMG have cleared you.
I hope you find answers soon, but it would appear doctors who know how to diagnose this have told you it is not ALS.
We won't argue that, and your widespread symptoms certainly don't match ALS.
 

sorin21

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Thanks for your answer. Yes, for me it's frustrating to have a lot of symptoms and tell me that it's anxiety and stress after I escape from tumor...it's hard to accept passing from very active to almost doing nothing... I hope getting an answer and feeling better soon.
Take care!
 
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