Could I potentially have early signs/progression of ALS?

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markb_1984

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I am a 37yr old, living in the UK.

Back at the beginning of this year, my partner and partner's son contracted covid. I tested negative, but was fatigued during the time they had it. Within a week, I shouldn't got a severe constant pain in my lower spine. Prior to this I had episodes in 2020 of my left hand paining which I had to stop wearing my fitbit watch for. I should also say to be thorough that I have also suffered from around March 2020 onwards with acid reflux for which out of nowhere I had a severe episode for which I needed an ambulance callout for to be checked as it can mimic a heart attack, but wasn't in that case.

Towards the end of January 2021 the pain in my lower spine started to improve, but my left hand and wrist was painful and made it hard to sleep. From this point on over a few months, the pain in my spine had subsided, but had spread to be in my wrist, the bones at base of my fingers and along my middle finger. as well as going down the base of my left foot and big toe.

In around July to August, the pain progressed to be in both arms and legs. The pains I have been feeling have been a mixture of burning, dull achesand throbbing / pulsating.

I have had an XRay which only showed me to have mechanical spinal disease and kyphoscoliosis. There was a period of 3 months from January to April where my vitamin D was low but has since returned to normal level as of April 2021.

I am currently awaiting my MRI result which has been a point of frustration not hearing the result almost a month after it has been reported.

I was prescribed nortriptyline which I have tried my hardest to take, but after 10 days have decided to cut back and stop owing to it making no real difference.

In the last 2 weeks, starting 4-5 days after starting my nortriptyline, I have experienced an aching, painful right arm and shoulder which is getting worse each day. I am also finding it harder to walk and especially going down stairs with my knees are weaker (popping and cracking) each day to the point where if this deterioration continues, I may no longer be able to go down the stairs and walking is becoming increasingly harder. I am also still getting pains in my hands. At night time, I am finding I am getting constant pain in my legs which also make them restless and makes sleeping very difficult.

The other feature is that I have been suffering with fasciculations in my left hand (wrist and finger) which lasted for a good hour one evening. I've also had twitching occurring in my left foot and also in my back just between my shoulder and spine.

I am awaiting a rheumatologist to report back my MRI so I can know what I need to do next. Up until my symptoms had progressed to a physical deterioration, I hadn't really considered MND/ALS, but with my marked physical deterioration alongside my progressive worsening symptoms, I am now concerned that I may well actually have it and am in the early stages on being symptomatic.

Really appreciate the advice from everyone in this community whilst awaiting the results of my MRI and deciding what to do next.
 

Nikki J

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Whatever is wrong with you sounds miserable but not like any ALS I have ever heard of. aLS is a motor neuron disease and your symptoms are almost totally sensory. A rheumatologist sounds like the proper person to work with on this. I hope you get answers soon

 

markb_1984

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So I've just received today news from my Rheumatologist that my MRI scan all came back clear. She seems to think I should seek out physiotherapy and that I could be suffering from fibromyalgia given my previous history of having CFS (although I haven't really had much symptoms of that for over 10 years).

I am still in quite a bit of pain in my left shoulder. More worryingly, my knees have become weak. To be precise, when I stand up, the back of my knee is extremely strained and really hurts. The front of my knee also is rather weak. This is making standing up and walking very difficult.

I mentioned to the rheumatologist about whether I could have a neurological condition like possibly MND/ALS and all she could say as I guess I might have expected is say that from a neuro assessment she did back in June, she wasn't concerned then but that I should seek out a referral to a neurologist if I felt I needed to be assessed for such a potential condition.

I am also still experiencing pains in my arms and legs at night.

Given my rather sudden and quite severe onset of weakness in my legs on top of the other symptoms described in my posts, appreciate thoughts on what I should be seeking out? Could it be that despite all my pain in my hands, arms, legs and feet being of a sensory nature, the onset of this rather rapid physical weakness along with continuing twitches are potentially early symptoms of having MND?
 

Bestfriends14

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Did you read the link Nikki so kindly gave you? If you did, you would be assured that no, your symptoms are not ALS, as they are almost totally sensory and ALS is a motor disease.

The "weakness" you mentioned, is it clinical or perceived? Clinical would mean that it has been confirmed by a doctor on a scale system.

Further, a rheumatologist is not the person you would ask for feedback on perceived neuromuscular conditions. It's akin to asking your gynecologist for advice on your feet; they would only be able to hazard a guess.

Every symptom you have mentioned points further and further away from ALS. That's a great thing. I'm sure it is frustrating, whatever is going on, but do continue to work with your docs.

Best of luck to you and take good care.
 

affected

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Truly you need to ask your doctors for direction, not search for things you, as a non-medical person, should be directing doctors to.
Your description certainly fits fibromyalgia and not ALS.
You are not describing 'severe onset of weakness' in your legs - remember you are telling this to people who are in wheelchairs and being lifted with a hoist. That is severe onset of weakness, not because they feel pain or strained, but because they feel perfectly normal yet their legs refuse to move.
Please, let this go and work with your doctors as chasing ALS is not helping find the cause of your issues nor the best treatment.
 
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