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View Full Version : Convinced I have ALS / MMD - Scared!



ChrisMayo
29-11-09, 14:50
Hello all.

Back again, but really scared at the moment.

Over the last couple of days I noticed dents on both arms where my muscles are like stretch marks, I googled this and noticed immediately ALS / Muscle Wasting / Motor Neurons Disease etc coming up, so I totally freaked out.

I phoned the Out of Hours Dr who said over the phone, it wasn't a red flag symptom and nothing that she was concerned about to even look at, and she said she was reluctant to tell me what those symptoms would be (as I said I had Health Anxiety) but she said, it wasn't of concern to her.

I relaxed a little, but then went to A&E that day, I told her about all my symptoms (which she knew as I'd been in 13 times previous!), and she said, there were no problems with my muscles (she couldn't even see the marks) and that I wouldnt be having random twitches, and all these other things coming and going if it was a serious muscle disease.

I relaxed a little, then spoke to yet another out of hours Dr who said he was 99.9% sure that I didn't have any kind of muscle disease just from speaking to me.

I then went to A&E the next day and saw two Doctors (joint session) and told them everything and they examined the marks on the arms and said they looked like stretchmarks, and had I lost weight, and I said no, not really, that's why I'm worried about muscle wasting.

They said it would be very rare and the fact that all my blood tests were normal, I walked to the hospital fine, I can still do normal things, etc, all pointed against anything serious going on in my body. They said I should get psychiatric help, which they arranged for me, as I pretty much broke down in the Drs office.

I've also been getting loads of weird marks on my arms, like lines when I lean against something, which will stay for quite a while then go. The Dr said this is most probably benign, but I don't know why I'm noticing it all of a sudden everyday!

I then went finally to A&E last night at a different hospital with chest pain, and muscle stiffness.

They took blood samples which were all normal, they did a neurological exam which was all normal, and they did an ECG which was normal.

I said I was convinced I had muscle disease or something else terminal, and he smiled at me and asked why I thought that. I said about the marks on my arms, and the muscle stiffness, and he said it would be very unlikely, and all my muscles look fine, but he said I can see my GP to rule it out, but with no family history, no neurological signs, it probably wasn't anything.

He said the marks on my arms were just creases by the muscles, but i'm not convinced. He also said if I'm not eating and drinking properly marks on the skin will show up easier.

He also said something about a certain blood level which may raise suspicion of muscle problems was normal, as was my liver and everything else.

I realise this is a really waffly post, but despite everyone saying the unlikelihood of my having ALS / MND I'm totally convinced I have it.

Reasons I think I have it:

Muscle pain
Occasional pain in back of legs
Dents on both arms
Being very thin
Twitching (which I've had for some time)
Weird lines and marks on arms

Reasons I don't think I have it:

It's very rare
It's very rare in people under 40/50
My neurological exam was normal
All muscles look the same size
The stiffness is all over, not just in one join
The twitching jumps around, and hasn't got worse in one place
I can still run, jump, walk, wave my arms around normally
4 people have told me how unlikely it is.


I don't know what to think really.

Also, a quick question:

What defines muscle weakness? I can still do everything as normal, just my arms and legs seem to ache, or be more tender.

I don't know if all the tension and stress and not eating properly is causing this, or if its my muscles failing.

Would appreciate any thoughts, sorry to go on

Chris xx

gypsywomen
29-11-09, 15:10
Chris your not wasting away ,, its all anxiety if we all checked our bodies we would find marks lines all sorts the thing is don't dwell on them my friend your a great guy i feel for you going through all this ,,

Gazman
29-11-09, 15:27
Hi chris,

welcome to my world lol, for starters because of your health anxiety you will notice all these things you have never noticed before, because you are (possibly subconciously) looking for them, you first started getting anxiety from noticing these pin prick dots correct?

This in turn made you really anxious worrying what it was, you found out there was nothing wrong yet now you have all these other symptoms... and now you are worried these are a sign of some other disease.

I had what the doctors said was a virus, and it lasted for a month! a whole friggin month, i was so anxious, i really thought i was dying! I then started to twitch all over and get pains in my arms and legs, vibrating feelings, shakiness, hand tremors etc so ofcourse i googled my symptoms and i got the whole ALS, MS, lyme disease etc!

I then rushed to the docs, i had lost 2 stone by this point, couldn't eat, was being sick with the dread and the (what i thought) was a fact i was slowly dying... doctor said i t was pure anxiety that started from the virus..

Since then i've had several neuro / reflex tests by GPs and i'm waiting to see the neuro, i've had loads of blood tests and been to A&E 3 times etc and all was fine.

That was months ago now and i'm still here and there is no difference to my strength etc and i still twitch and have a new symptom at present but what i'm trying to say is that all your symptoms point to anxiety and like so many of us you refuse to see this and must think it is of an organic disease.

I know what defines muscle weakness and the various tests you can do but i'm not going to tell you as all it will do is fuel your anxiety and you'll start doing strength tests all the time like i did.

I feel for you mate, no one can understand what it's like unless you've been there, but i really do think it's anxiety. :yesyes:

- Hope you feel better soon - Gaz

erin31
29-11-09, 15:48
Hi Chris.
I totally agree with the two posts above about it all being anxiety.
I do hope you start to feel better soon :hugs:

Gazman
29-11-09, 16:01
also wanted to add chris, please stop googling your symptoms!!! if you must google then atleast put anxiety into the search aswell!

ElizabethJane
29-11-09, 16:48
Hello Chris I have read your posts with interest as I have first hand experience of MND. Your symptoms do not match someone suffering from MND. I am not going to distress you further by outlining what they might be. It is an extremely difficult disease to diagnose and has been split now in to various categories. Please try not to worry MND is very very rare. I hope you begin to feel better soon.

Cell block H fan
29-11-09, 18:11
also wanted to add chris, please stop googling your symptoms!!! if you must google then atleast put anxiety into the search aswell!

^
I dont even knw what this ALS is? I never google though. I worry enough about common symptoms without reading up on unusual stuff!

Gazman
29-11-09, 18:43
^
I dont even knw what this ALS is? I never google though. I worry enough about common symptoms without reading up on unusual stuff!

It's full name is Amyotrophic lateral sclerosis and is a form of motor neurone disease, it's progressive and fatal and causes degeneration of motor neurones in the body, people like stephen hawking have it.

Cell block H fan
29-11-09, 20:03
It's full name is Amyotrophic lateral sclerosis and is a form of motor neurone disease, it's progressive and fatal and causes degeneration of motor neurones in the body, people like stephen hawking have it.

Geez, well I assume its quite rare??? In which case I really dont want to add that to yet another worry lol
Google is risky. I still get HA, but nowhere near as much or as bad as I used to when I was googling & reading magazine articles.
I miss the magazines, but its just not worth me buying them. I'm certain I would of 'had' a lot more things by now. Life is better this way lol

ChrisMayo
29-11-09, 21:53
Hey guys.
Thanks for the replies.
Saw someone else at a different hospital today who didn't seem concerned. Seeing my Dr tomorrow and going to try and get a referral to a Neurologist for my peace of mind.

Anyone else got any thoughts, replies, etc.

xx

Gazman
30-11-09, 00:47
Geez, well I assume its quite rare??? In which case I really dont want to add that to yet another worry lol
Google is risky. I still get HA, but nowhere near as much or as bad as I used to when I was googling & reading magazine articles.
I miss the magazines, but its just not worth me buying them. I'm certain I would of 'had' a lot more things by now. Life is better this way lol

Yes it is rare i believe 1 or 2 people in 100,000 people can suffer with it, there are familial types too that can be passed down that increase your risk, men are more at risk than women i think but it is even more rare to get it if you are under 40 but some neurologists believe that extreme sports people have a higher chance of developing this horrible condition.

@ Chris - I also wanted to add that twitching in ALS happens AFTER weakness and you would notice a limb doesn't work properly not before and it is usually in 1 area and constant, not like the twitches we get.

By all means see a neuro if it will put your mind at rest but please try not to jump to other diseases otherwise this will be never ending for you.

Has your doctor put you on any meds and/or therapy?

ChrisMayo
30-11-09, 01:09
Hey Gaz

Thanks for your info. I'm going to see my GP tomorrow and ask for a Neuro referral, I'm not sure he will give me one, but I'll make him know how much I'm concerned about it.

I'm on Citalopram, and the hospital let me see the emergency Psychiatrist who has referred me for psychiatric treatment, so, something good came out of the multiple A&E visits! my dose has been upped to 30mg of Citalopram, and been on that for 5 days now (5 weeks in total), starting to feel a bit more normal today, so maybe it's starting to have an effect.

Will let you know what the Dr says tomorrow.

Cx