It's not looking good.

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Ecokid

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Hello,

I've read the sticky and am grateful for the posters on this site for any input. I'm 37 and my symptoms began in January 2020. The first thing i started to noticed was a numbness of both feet (i could feel sensation but it felt slightly tingling all over). I assumed it was a pinched nerve or some sort of stress and left it. After a month it hadn't gone away so i got my bloods done which were normal. As it was mid pandemic and everything was crazy, i just got on with life and put it aside. My partner is also a GP and he wasn't worried about it. So i wasn't either.

In the end April 2021 over the space of 48 hours i had twitching begin in my left toes which spread rapidly across my body (head/trunk/legs/eyes). While in bed, I also had a plucking sensation of a nerve in my right thigh which was very uncomfortable but not painful and only lasted a few seconds. After this, I had very strong tremor/vibration throughout my legs which has persisted since. We assumed it might be MS and got an MRI sorted. It came back clean in June.

In September I started to get joint pain in my thumb and index finger as well as around my hamstring and my tendons in my feet and hands are both much more visible than before. After the clean MRI i started to look into what else it could be but didn't seriously consider ALS until August as my onset symptoms were not typical whatsoever. I have not lost any function yet, but I am starting to struggle with walking. My left hamstring is becoming painful to walk on and I am starting to struggle walking any distance. I still have to wait a month until i see a neurologist - the wait times here have been over 2 months for a private appointment due to the backlog caused by covid.:cry:

I keep trying to reassure myself that it cant be ALS but i stumbled upon some concerning research yesterday. My mother had Schizophrenia and my sister has epilepsy (which has an 10% increased prevalance in children of patients with schizophrenia, which suggests there is potentially a dodgy group of genes in my family). In 2017, researchers at Trinity College Dublin published research which suggests an increased incidence of FALS/MND in families with a history of Schizophrenia or even a higher prevalance of suicide.

I'm at a loss and feel so sad all the time. I don't know how to get through the next month. I hope its going to be ok.
 

Clearwater AL

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Have you seen a Neurologist or had an EMG yet? Just for note...

You wrote "... but i stumbled upon some concerning research yesterday."

Thousands of people have falsely convinced themselves they have a
serious disease after turning to 'Dr. Google' – according to new research.

Instead of alleviating concerns, 74 percent of those who have self-diagnosed
online searching for their symptoms made them worry more about their health.

That is due to the answers given by Dr Google, of internet medical advice,
was found by researchers to be misleading without proper evaluation by a
a qualified physician.

Sixty-five percent of respondents who used the internet to self-diagnose themselves…
the results show typing your symptoms into the search bar might do more harm.
than good.

Hundreds here in the past have suffered the "limbo" until appointment or their
EMG. You're not alone... past or future.
 

affected

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goodness me, I can't see any dots you managed to connect to bring you here.
after 20 months with no actual failure, and no symptoms that even impact on your ability to do anything, and no indication from a doctor that there is anything truly wrong, you jump to ALS?

Please, take a breath, go back to your doctor with your concerns and ask them what they believe is wrong and what they recommend is the next step to take. I've not heard of ALS taking a path anything like this, nor the family history you report being connected. All the best, I'm sure your doctor can direct you the best way for your situation.
 

lgelb

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Al, the OP has said he has a neurology appointment next month.

I agree that there is no reason to think of ALS. The epi you cite is very weak indeed and there is no history of FALS or MND in your family. There are some neuropsych disorders that overlap somewhat but you haven't described anything relevant in your own case.

Not knowing what bloods you had drawn, I would go back and make sure that a comprehensive metabolic panel (CMP) was run, as I am sure you are aware of the links between diabetes, for example, and painful neuropathies, as well as potential links with liver and kidney function.

Best,
Laurie
 

Bestfriends14

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I'll chime in in hopes to add extra assurance that nothing, nothing at all you have described, sounds like ALS onset. I'm honestly a bit shocked that you somehow drew a conclusion as to what is going on with you to what ALS actually is. I guess that's what happens when one turns to Dr. Google; unnecessary fear.

What have your doctors said about everything?
 

Ecokid

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Thanks for your replies - i really appreciate it. ALS wasn't even on my radar until my MRI came back clean as numbness is not a typical onset symptom but i did start to google after MS was ruled out. I've had full bloods ( including diabetes) taken in April and again in August and there was nothing concerning. Initially, when my numbness began in January 2020 we thought it might be due to a low B12 as I was primarily eating veggies but my B12 levels were fine.

My GP said that its unlikely to be ALS because I'm young, which initially reassured me until I started to look into ALS but that was a month ago before my issues with walking started in the last week or two.

I am trying to keep optimistic and hopeful that it is not ALS and will wait it out until i've seen a neurologist in November and keep you guys posted. I'm going to try stay away from reading anything else now until i know for certain. It's just that i was feeling rather overwhelmed and worried about the future, which is understandable but not overly helpful. I hope everyone is doing OK and thanks again.
 
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