Is this bulbar onset help please

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Mt7

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Hello please can someone give me any information and guidance since March I’ve had the worse case of fatigue ever I mean just out of nowhere I could run 5/10 miles now I carnt do 5 minutes I’ve gained weight about 2 stone for no reason been heating healthy
I’ve had all over body shakes
Twitches muscle tremors
Main issues is head brain pain going to neck back jaw fatigue mouth fatigue tired as if it dsnt want to talk blurred eye vision to bright lights feel as if whole face is becoming weak I’m scared of bulbar onset voice is fine throat is sore
Covid rest negative
Blood work fine
Carnt get an appointment with doctors
Went to and e they said this is something I should take up with docs but carnt get an appointment because wats going on with the world in covid terms
Please if anyone can give me any info I would appreciate it thanks again
Also lower back pain and general muscle pain and spasms after gym
 

Mt7

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Also forget to mention muscle twitches widespread mainly in abdo aerea tho than most
 

lgelb

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I am sorry that you are unwell, but I do not think it has anything to do with ALS.

I would think video visits are available in some form in the UK, no? Maybe the A&E or your GP's office has a referral number for that?

What you describe sounds like a virus or bacterial infection, if anything. I know Lyme is a possibility there, for example. That you do not have fever at least suggests a more chronic than acute infection, but that is not an absolute. I trust that stroke and meningitis were ruled out in hospital.

Not sure what kind of Covid test you got but you could have had it without a positive virus or antibody test even now, and, as you know, about 10% of known cases seem to have long-term issues.

I wish I had more actionable advice than to seek out more help, but meanwhile, of course, I would try to rest up, hydrate, continue to get fresh air, avoid overly heavy gym sessions, and not stress. Easier said than done, I know. On the off chance that it is some kind of atypical migraine disorder, you might try a low tyramine diet, e.g. staying away from alcohol, aged cheeses, caffeine, and chocolate. High protein, low carb, real-not-processed food may be helpful. You could try cool packs and heating pads to see what feels best.

It can also be worthwhile to keep a diary of your food, drink, , exercise, sleep and symptoms each day. This can inform the next medical encounter that you have.

Since you are sensitive to light, I would install a blue light filter app for each of your devices, and maybe get some "cool" bulbs for your lights at home.

The good news -- you're in the wrong place here.

Best,
Laurie
 

Mt7

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Hi all I’m 35 years old last fed/March it all started I posted on here I became shakey week dizzy lightness in legs arms back I trained each day fine no problems I had muscle twitches in arm legs shoulders mainly diaphragm tho I feel one side of lung not working but oxygen is 99 my head feel heavey my arms feel like there not part of my body my jaw muscles feel week they hurt I have episodes of headaches come and go my eyes become blurry to light my lower back spams wen I try to run it dsnt let me I get a pain lower back wen I try to lift weights I carnt my upper back is hot as anything like a burning sensation at night also my legs I feel it’s harder to breath sometimes wen I lie down or sit around i feel it the most wen I’m actually in gym training I feel ok but not 100 percent it’s wen I’m sitting at home or even walking I feel like I’m goner spams lower back and legs cramp all time I’m stuck in this Covid race we’re no doctors can see u the a e only want to help people that r currently dying or life threatening I u understand This I’m not asking for a doctors advise just some sort of relation to my symptoms does anyone else have these I’m so scared like all I have young kids I dnt no we’re to go as it’s so hard to get an appointment anywhere even private now please can anyone help me would my symptoms be obvious now a year on down the line
 

Nikki J

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Nothing you have posted changes the advice you were given before. You are reporting a lot of sensory stuff - pain, feeling weak,headaches, dizzy, lightheaded all of which point away from ALS. Your symptoms are all over which also isn’t how ALS works.

I am sorry you don’t have access to a doctor. Not even a phone or video visit? Your answers are not here though. Good luck
 

Mt7

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Hello thank u so much for the reply
Concerning issue I have at the moment is kind in overdrive it’s sending me to bad places
My symptoms have developed a bit as this week my wrist on right side it’s becoming stiff If I like hold my phone up for a bit it’s starts to shake also have no issues with lighting decent weights have more issues with light things like dripping bottle tops empty bottles it’s so strange Would u consider this to be anything that needs investigated thanks I’m also looking to leave a donation also if u can send me a link u guys r incredible 💙
 

Mt7

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Also wen I bend down or lean over I get severe back pain and tight cramps and spams in both legs and like to helping sensations all time wen I run I have to stop my back and legs lock up really bad thansk again if u find the time to reply u r the only ones I seem to get a reply of I’m struggling here
 

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It sounds like you need a good stretching routine and to strength build. A poor core and back can lead to referred pain, twitching, and stiffness throughout your body. As this is a forum for those with ALS, I recommend you speak to a physiotherapist for tips on a regimen. If you are struggling emotionally, you could consider speaking to a counselor, as well. Your symptoms do not warrant an ALS site, but perhaps further investigation with your PCP can bring you the answers you are looking for.

Good luck to you.
 

Mt7

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Mt7

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So the cramps spans burning sensations pain separate around the body from back legs shoulders practically all over stiff wrist at time’s points away from als ?
 

Bestfriends14

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Asked already and answered already.

Take good care and good luck on your diagnostic journey.

Stay safe
 

Mt7

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Mt7

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Hi regarding my symptoms my shoulder wrist and tricep all feel tight and stiff tiers very easy no lack of strength but feels heavey on and off is this a worrying issue
 

Mt7

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I’m just scared an no one to speak to me everything is locked down
 
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