Mid 20s, Showing every symptom. Please read.

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Seedgo

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Hello, Firstly - Thanks for taking the time to read everyones posts - many of which show no reason to even think about ALS. I have read the pinned posts and feel this is valid.

For background - I am in my early 20's and Caucasian.

I have had symptoms for around 1.5 years now - It started with my muscles shaking, Starting in one hand then spread to my whole body. It also started in my foot - after just 2 minutes of walking the bottom of my foot would ache lots.

Symptoms continued to get worse and around 1 year ago I noticed my leg felt weak (just one) - This then developed into constant fasciculations in my thigh as well as cramping type pain (pre-cramp?)

So this continued - My leg got weaker and my right leg constantly twitching - non-stop. Mostly my thigh but it kind of spread throughout my leg. I have to wear shorts now because it's so annoying - It's kind of like itchyness where I can just feel my leg twitches slightly touch my trousers.

So this continued, Next the same pattern occured in my right arm, weakness first and then the twitches started - It's also the same as my thigh - small constant twitching. It then spread to my right pectoral muscle and back. 99% of the twitches are in sided and 90% of those are in the same 4 muscles (bicep, thigh, pec and right shoulder.

My right side is tiring extremely fast - I write something on a whiteboard and after 10 seconds I have to put the pen down yet with my left (non dominant) it's fine.

Lifting my thigh and arm is quite difficult - pushing my thigh up feels extremely sluggish and I have to kind of "throw" it up . Same with my right arm - when I make a cup of coffee I struggle to manipulate the kettle and then I pass it to my left arm and it's completely fine. The muscles on that side are also extremely soft & wobbly. During any physical activity I feel the muscles flying around.

During when I try to exercise for example today - I did a 5 minute run. I felt my leg muscles in the knee, thigh and calf flying and jellying around as I ran and once I got home - Those muscles were DEAD. I mean I seriously struggled to move the leg because it was so tired but my left was fine.

I have seen 2 neurologists and had every test be clean but no EMG yet. 1st doctor found worrying symptoms like Hoffman's and brisk reflexes and spasticity in my leg (about 6 months ago). The last one (1 month) didn't really examine me and just said "it's anxiety and stress" and "I'm too young" (almost 25 years old now).

Whenever I stretch my muscles - My right side will twitch like crazy, I constantly feel like insects are running under my clothes on the right side, It's so annoying and scary.


What do you think of this? I try to not check my symptoms but given every test was clean but not the EMG I am thinking it's a high possibility. The weakness is causing me to flail my limbs around at this point.
 

affected

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If you read the pinned posts, then in your heart you know that you have not described ALS in the least. 2 neurologists have told you the same. Please keep working with your doctors to find the cause of your fatigue.
 

lgelb

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Most often, what you describe can be very effectively addressed with attention to stress, sleep, exercise, nutrition and hydration. You can also film your sleep and see if there are breathing or movement issues.

Rather than see more neuros, I would return to your GP and explore some of these in more systematic fashion.

Best,
Laurie
 

Seedgo

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Thanks Laurie and Affected, You really don't think this sounds like ALS or some kind of muscular dystrophy?

Just because of the weakness, twitches and soft muscles/lack of consistency seem to be all over the web. Is there anything that jumps out as not a symptom?
 

affected

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This is our official stand - anything else you find outside of this is not. You need to work with your doctors, if they say nothing is wrong, what could you want from us? I see nothing concerning in your description.
 

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No, I don't. But by all means, get an EMG if you will be willing to accept the results. Also look at your mattress.
 

Seedgo

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Ok thank you both for the replies. It's interesting that you don't see anything wrong as everywhere I've read it seems to be textbook.

When you say look at your mattress do you mean it could be causing these issues?
 

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Yes, you spend hours in sleep each night, and a suboptimal position sets the tone [literally] for your muscles during the day as well.

If you could diagnose yourself with ALS by reading, I daresay there would be no need for neurologists, nor EMGs. That is a conceit not worth hanging onto, as it will only delay addressing what is improvable. And if it were "textbook" [it's not], one would expect one of your two neurologists to have pursued it.
 

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If you read the link I sent you, there is nothing at all textbook about your symptoms.
I will just gently say however - people with no medical training will read lists of symptoms and imagine they are experiencing them because they don't understand them. I don't mean they are imagining symptoms.
What I mean is they read - clinical weakness, and say, "oh yes, I am getting so tired trying to do things, I have this symptom!"
In fact, tiring easily is not the same thing at all.

You do need to let this go and work with your doctors now as only they can figure out the right diagnostic path with you.
 

Seedgo

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Interesting. I don't think my sleep pattern or bed has changed so it would be weird for that to just start now right. It's interesting you guys don't think it's textbook considering I have weakness, twitching and atrophy in affected muscles.

The neuro has booked me for a an EMG/NCS. I guess il repost here once I have it but I'm not hopeful that this looks like anything that is not ALS but il wait and see.

thanks

Is tiring not a sign of progressive weakness? That's interesting , However unfortunately there has been loss of movement too - Inability to spin my pen in my right hand, Reduction in typing speed and cannot move my right arm to the same positions as my left.

I have an emg/ncs booked in a month so il be sure to let you know what the results of those are.

I find the only reassuring part in that post is my age however given the symptoms I cant really take comfort in the odds of a symptom free person of having it is low. Wel see. Thanks for your messages
 

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You have no ALS symptoms,. I'm sorry you are unable to accept that and find joy in that. Where did you get you neuromuscular education from? You're practically diagnosing yourself with ALS even though you do not have ALS symptoms, so I'm curious to know what educational background you have to base your opinion.

In any case, please do stop by after your EMG to update the folks here. It's always helpful to update with feedback on your clean EMG as it helps others to see why certain symptoms are not indicative of this rare disease. If you need reassurance in the meantime, please re-read the "important " sticky as it has good information.
 

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No tiring is not weakness, not even a little bit. After 2 years, you can't spin a pen?
"I have seen 2 neurologists and had every test be clean"
Therefore no clinical weakness. You don't seem to be reading the post I keep directing you to.

Please leave this now, and let us know the EMG result. Just ask yourself if you will believe it when it comes back clear for ALS - after 2 years at this young age you have refused to believe you don't have ALS despite all the investigations.

I truly wish you the best, talk to your doctor about how you can be helped to move through this process the best.
 

Seedgo

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Thanks for your replies. My EMG is next week.

Since I last posted things have continued to get worse - Cannot maintain my running routine because of my right leg weakness and muscle atrophy which causes the muscle to wobble around like jelly so have stopped and instead started taking walks instead. 22 years old...

Cannot stand on my leg alone anymore or use it to control my weight. Have to limp around. Can't hop on the leg. Constantly twitches so much that I cannot wear trousers anymore because the constant twitching distracts me.

Can feel every tendon, ligament and bone in my leg because it's so soft and thin yet the other is as strong as a horse.

Constantly biting my tounge and cannot mouth breathe without saliva getting stuck which is what I want to do since now my sinuses are always blocked. Tounge moving extremely slow and hard to move food from my mouth because it just doesn't reach anymore.

Reading back the replies here to ease my nerves but I just can't see why a few people here are saying this is not textbook ALS and that I have no symptoms of this disease (atrophy, fascics, weakness, spreading, tounge issues).

I really can't see it, with clean MRIs this seems like it's the only possible thing it could be given how it has spread from my foot to the rest of me within a year. If I'm really lucky - I'm hoping it could be something like autoimmune mediated polymyositis but the progression doesn't match.

I'm almost so sure at this point I might forgo the EMG altogether.
 

lgelb

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Fortunately for you, you are neither a neurologist nor an EMG. Your statement about skipping the EMG because you are sure you have ALS is so ridiculous there is nothing to say. Without a formal diagnosis of whatever you may or may not have, there is no way to treat it, receive benefits, etc.

Please do not post again until if/when you have an EMG result in hand.
 

Nikki J

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If you believe you have MND skipping an emg and thus not getting diagnosed would be foolish to idiotic. You would be denying yourself treatment, a chance at a clinical trial and patient support services which are decent in the UK. If you don’t have MND as your doctors believe you are prolonging mental torture

if you have the emg let us know the results otherwise don’t bother because there isn’t any way we can help you
 
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