Has anyone had similar symptoms?

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Pet

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Hi to everyone, I’m sorry to bother you all kind people, I wish this post could be helpful to at least somebody else in the future.
I’m not native so I apologize for my English.
I’ve read the first post of this section, I just like to know if someone has had some similar experience, not a diagnosis of course.

* If you don’t want to waste your time skip to summary

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Premise, a summary of my story before neurologic symptoms
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I’m a 23 years old man, I was almost always athletic oscillating between skinny and “normal”, practicing “team sport” till I was 18 and cycling, dancing, occasionally playing sports with friends etc from there to the end of 2021 (start of symptoms).

I got hit in the head between 17-18 while practicing martial arts and from there I’ve experienced tinnitus (we call those “acufeni”) but, my fault, i’ve never done any MRI in that period.

A small note.
Since I was a child (about 5 years old) I’ve started noticing a few “very small light points” in my see, especially looking at brighter surfaces (like sky or white walls) while in dark some sort of “dimly bright noise” this is worsened by years, but I can clearly still see like you I think, except the amount of “noise” in bright and dark has increased. The ophthalmologist never cared a lot and told me it’s normal (my retina is okay they say), but I just want to mention mine “points” are not the so called “floating worms” because I also sometimes see those and I’m totally ok with that.

My skin has always been dry.

I have G6PD deficit, but not ever had a crysis, nor do I know which variant I have.

I’ve never (at least from symptoms and test) got COVID19.


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The problems
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In december 2020 I got a month of tachycardia with apparently no reason (episodes seemed random), (It was one of the happiest time ever at least consciously), at home the peak measured (we have the electronic pressure gauge) 163 bpm, I finally went to the cardiologist I had and electrocardiogram which was clean and and after some weeks the problem spontaneously disappeared.

Meanwhile I’ve noticed my feet (right and left) becoming cold followed by my right hand, for both feet and hand you could see red fingers (but not exaggerated like in Raynauds’), this never left me since then, I’ve also asked friends and family to check if they were really cold or just my impression and they indeed found them cold. Unfortunate doctors could only see the slight difference in color between the two hands because if I am in a warm place they tend to go back warm (and doctors studies are warm).
Last note about that, sometimes I felt my left leg like there was an icy wind inside (especially in bed).

I’ve started having really short muscle twitches around my whole body, but I didn’t care a lot.

Last days of february 2021 I had an episode where I felt my both hands really weak, but it lasted half an hour and then both came back normal.

So I was under blood tests both to check for cold hands and feet, some stomach air I got and for the episode of weak felt hands.

This lasted till april 2021 with all test negatives (I can provide all If you want):
No bacteria or virus
No vitamin C, B12 , Calcium, Sodium etc deficit
Negative ANA. ENA etc
No emochrome or thyroid problems etc.

Suddenly, some days before analysis results (april 2021), I felt my both legs tired, like really heavy for nothing shortly reached by a lot of muscles, arms, back, neck etc.
For heavy I mean walking was like walking after a marathon, my arms (both) would shake after doing a simple task like carrying a bottle of wine for some minutes.
Fasciculations (all over body) were more consistent especially at rest, and I had “small cramps” in the legs when using them (never at rest).

I admit this time I was psychologically down and I was tending to depression due to those problems.

I’ve finally had the MRI of the brain and the very start of the spine and came back normal (May 2021).

I’ve started the neurological visits.
They didn't find anything and told me my weakness was not objective, but I was worried and found myself searching for ALS info.
Last one was in november 2021 with an Italian ALS specialist (Christian Lunetta) and he told me I could possibly have BFS who also discouraged me to see psico-psich because to his experience both patient and the doc/therapist “go mad” in these cases.

I’ve noticed (may - june 2021) I had increased salivation then before.

Long story short:
I did 4 EMGs (of course both EMG and NCS) in the neuromuscular specialized hospital department (I can provide you all):
2021-05-12 (private)-> all 4 arts: all clean; 1 fascic “destra gastroc caput med”, 1 fascic “sinistra vastus med”.
2021-06-23 (private)-> all 4 arts and half face: all clean.
2021-11-12 (proposed by doc who did 2021-05-12 EMGs just to a formal control) -> all clean;
1 fascic “destra gastroc caput med”, 1 fascic “sinistra gastroc caput med”.
2022-06-05 (private)-> all 4 arts: all clean; 2 fascic “destra gastroc caput med”, 1 fascic “sinistra gastroc caput med”.
*for “all clean” I mean docs in the summary wrote “no signs of problems to 2nd Motor neuron” and in no case they found fibrs.

They also had me one “Evoked Transmission Potential” exam in June 2021 and it was clean).

All right if it wasn’t the “cramps” (it hurts when I move it) in my legs (especially in my right is lasting days) are back and I feel the left leg (between knee and feet weaker, when I walk for example), this last one is constant weakness since a week but there were some times in the past 2-3 month I felt it weaker for some minutes.
Sorry again, I know It’s about to fail and not to feel.

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Psychological help
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I’m quite skeptical, not for psyc in general but, but in case of physical problems.
But because I’ve promised my friend I’d give it a try I did, I was 2 months on Cipralex, but to me it didn’t seem to change anything, also the sessions with the psy seemed all the same like I’m listen the same phrases again and again ,so I’ve stopped.


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Med Response Summary
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Neurologists and tests cannot find anything and tell me I’m all right.


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What I would like to ask you
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I would like to ask you, if anyone has got the same symptoms of cold hands (left hand is still warmer and less red than right one) and feet and eyes symptoms, even someone not diagnosed with ALS but maybe with neuro symptoms as well.

Thanks and I apologize for disturbing you
*For any Exam (blood, EMG, photo of hand color difference I can post everything)
 

ShiftKicker

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Hello-

Please make sure to read here: Read Before Posting

In that link you will see that all of the symptoms that you list are not associated with the onset of ALS. Sensory symptoms (tingling, cold hands, etc), heart issues, problems with your eyes, dry skin, etc, all point away from ALS. Twitching is associated with many many different issues, despite what dr google says. Your emg results, plus your clinical exams have all cleared you of ALS as well.

Hopefully you will continue to work with your doctors to find out what the trouble might be, but rest assured, ALS is not in the picture.

Take care
 

Pet

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Hi @ShiftKicker , thanks for the quick response and for your words.
I just want to say that my feet and hands are actually colder (execpt for the left hand) in not warm places, the only true measure I had was beacuse of Covid so you have those video-termometers and the right hand was 34.5 while left 36.5, also my family and friends confirmed that it was objective colder and not only subjective.
 

Nikki J

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Cold hands and feet are not ALS symptoms
 

ShiftKicker

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While that must be of concern to you, this is not something that is associated with ALS- you will have to keep working with your doctors. Please make sure to read the link provided.
 

Bestfriends14

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Your symptoms don't say ALS, nor do your 4 (4!!!) EMGs, so you can finally let worry of this disease go. Keep working with your docs.

Best of luck to you and please take good care.
 

lgelb

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If your colder hand bothers you, a physio can help you with exercises to improve circulation -- you can also find these on line.

Increased salivation can relate to food and other allergies, and/or disturbed sleep (each of which can also relate to episodes/feelings of weakness). It can be worth keeping a food diary and any unusual environmental exposures, and comparing it with your issues. You might video your sleep to see if there is something worth reporting to your doctor.

Dr. Lunetta is extremely reputable and experienced, so between his opinion, your four EMGs and all other exams, you can rest easy. You do not have ALS or anything like it.

Best,
Laurie
 

Pet

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Hi, I'm sorry for answering this late both due both to forum rules both because I had some busy weeks, I thank you all for your replies.

I've read some posts about red/purple hands and feet on this forum and it seems the pattern is similar with someone, even before weakness: cold and purple hand/foot when cold and a bit swollen when hot (already done circulation tests all negative)
; also I've been experiencing some "short small painless" cramps in hands recently.
But I don't want to disturb you kindly people , if you let me keep theese posts so future people could be helped by this "diary".
If I get to know what I have I'll write down.
 
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