Terrified of ALS

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Johnbarry69

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Hello everyone. I am 21 years old and from the U.K.

Around 8 years ago my grandad passed from ALS and watching him at such a young age truly terrified me. Ever since then I have had horrendous health anxiety.

around 5 months ago I noticed a numb patch on my back. The doctor told me that he wasn’t concerned about this as it is most likely a trapped nerve. This numb patch is still present however hasn’t gotten any worse and isn’t an issue anymore.

now. Over the last few months I have noticed slight muscle atrophy in the upper right side of my back. I went to see a medical expert who told me that my right hand side is around 10% less muscular than my left however he said it wasn’t concerning.

I am so worried about this atrophy and I find myslef obsessively checking everyday. It’s been weeks now and is driving me insane as I’m terrified that it is als.

there is no clinical weakness and I am still attending the gym everyday. In fact my right side (which is less muscular) is stronger than my left side.

the only symptom I am concerned about is the atrophy on my right side. It is quite uncomfortable at times and aches. It is noticeably thinner however there is also stronger.

I’m terrified that I have ALS and my anxiety is through the roof.

I hope you guys can help me out. I appreciate every one of you and if you read this far I truly Thankyou ❤️
 

lgelb

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Very sorry about your grandad.

As for yourself, I think you know that these are not signs of ALS. There is no rational reason for your concern. We are all different a bit side to side.

But you have an obsession that is making you anxious, and there is no way 'round it except counseling. Health anxiety is very common and can be helped. But you have to reach out to your GP or someone else you trust, to make a referral to someone who can provide you with that help. It is worth it.

Best,
Laurie
 

Johnbarry69

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Thankyou so much for your reply. But the right side of my back feels more bony and it causes me to slant to one side when I sit. This makes it uncomfortable and causes me aches and pains.

the one thing that is keeping me Sane is that there is 0 signs of weakness. And no other symptoms. But is a 10% difference a lot?:(

I’m just terrified about the “atrophy” you know

as for the health anxiety you are so right. Thankyou for the advice. My parents are telling me to see a GP about it so I think it’s best to get help for my health anxiety.

thanks so much for the reply.
 

lgelb

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A 10% difference is not of concern since as you note there are 0 signs of weakness. See the GP. It may take time to find the right resource and work things out, so the earlier you start...
 

Johnbarry69

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Thankyou so much! It’s more of an achy issue to be honest. It aches quite a lot on the right side of my back and is 10% thinner. This makes it quite uncomfortable to sit on as it slants my back to one side.

these are not symptoms of ALS though are they?

surely I wouldn’t be able to go to the gym and lift heavy weights everyday if I had als right?

My parents are telling me that if I had ALS I would certainly know about it As there would be significant strength issues. But is it true the weakness comes before the atrophy?

I have been “worried” about atrophy for a few months now and no real weakness. Surely weakness would be present by now in ALS.

thanks again for the reply you have helped calm me down a great deal :)
 

lgelb

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No/yes/yes/correct.

If is truly a back problem that is affecting your balance, you could discuss with the GP the possibility of referral to a physio who can help you, even on line.

We can always see more and make better decisions when we are calm.
 

Johnbarry69

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The only issue I have is that when I lay down it feels very bony on the right side of my back. It’s is 100% not as muscly and is very uncomfortable. Especially around the shoulder area. I’m just scared that it is getting worse.

maybe it’s just because I’m thinking about it. There is also a burning sensation at times when I excersixe my back muscles. Maybe I have pulled a muscle at the gym?

I have been to the gym again today and there is really no sign of weakness. In fact my right side may be even stronger still.

when I saw a medical professional he said that the left side may be more England’s due to muscle irritation and he never even mentioned anything like ALS.

after seeing my grandad have this Illness it just terrifies me as I’m still so young.

surely with atrophy comes weakness though right? As there is less muscle mass?

I’m there isn’t any weakness and I’m still at the gym everyday lifting the same amount I think I am really overthinking it.

by the way I truly appreciate you replying. You are so kind and you are really helping me attempt to rationalise these fears. ❤️
 

Nikki J

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Laurie has veru patiently attempted to reassure you. You know this is not MND. MND atrophy occurs from disuse which happens due to weakness. you have no weakness. The doctor did not see atrophy. if you need to talk about this further it would be more appropriate to seek counseling or perhaps a site like nomorepanic. Please understand this is a site devoted to those confronting MND and their carers. We try to answer questions but once we have we need you to move on. We are not an anxiety resource

good luck
 

Johnbarry69

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Thanks so much Nikki I do appreciate your reply.

it seems as if the whole right side of my body is around 10% thinner. From my shoulder to my back to my lower back and my arm. Is there a chance this is normal?

can I stop worrying about als?

surely with this amount of “perceived atrophy” I would have some weakness.

I just want to know I don’t have als after what I saw my grandad went through.

I won’t post on this forum again. After this message. Thanks again for all your support ❤️
 

Nikki J

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See above answers

closing thread

relax and enjoy the holidays
 
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