constant weakness, concerned about what it could be...

[robNorman]

Hi,

Im 28, a few months ago I woke up with what I thought was a bad ankle, I assumed it was a sprain. I went to physio and it seemed to be getting better and I was able to walk on it fine but it never got 100%. Then as I progressed doing more difficult exercises I started getting odd feelings in my foot as though it was tingling and wet sensations. Now a couple of months later a very similar thing happened to my right foot and that feels stiff all the time in a very similar way. I often also get small twitches in the foot and cold sensations. Now I can balance on both feet fine and can do flexibility exercises but I don’t have any real confidence on the strength of the ankle as whenever I do seem to do exercise it gets worse again.
Also recently both my wrists seemed to feel strained and achey and I don’t have full motion in them. This seemed to come on all of a sudden and to both wrists.
Now my legs are feeling constantly stiff and achey as though Ive run a marathon. This is a real hinderance at the minute as walking is difficult and Im unable to do any proper exercise. Its so frustrating as nothing seems to be getting better. Ive been to doctors and Ive had blood tests and an EMG exam coming up. Doctor didn’t seem to think I was showing signs of ALS or the scarier illnesses but when I went my legs werent as stiff and my wrists were fine. Have any of you guys come across these symptons as Im obviously a bit worried thinking about some of the things it could be?

Thanks and sorry for pestering.

 

[notme]

ALS doesn't come and go. Once you lose something--it's gone. Joint issues can be a whole host of things--from proper nutrition to arthritis.

Morning 'stiffness' isn't uncommon in a lot of people. But--ALS ultimately affects muscles--not joints.

Hope they can find out what is going on--but sounds like your doc believes it's not ALS

 

[Al]

I'm no doctor but it doesn't sound like ALS to me.

AL.

 

[robNorman]

Thanks for your responses, It is mainly since my muscles started feeling stiff and hot that I started worrying about als its just a pain as it started off just as a stiff ankle and now seems to be the leg and wrists. Ive been thinking that maybe the stiff legs are because Im not exercising wherehas I use to be really active but Ive no idea. Another thing I seem to get is that my feet tend to be really achey and uncomfortable and sometimes have a burning/cold sensation, this seems to be mainly when Im sitting with feet flat on the ground but can be when at rest too. It doesnt seem to bother me during the night. Thanks again for the response, nice to get a real person responding instead of just reading websites and diagnosing myself with everthing

 

[olly]

hi rob.
maybe your gp should get you a referal to a rehumatologist,just thinking this because your main problems are your wrist and ankles (joints).
the odd foot sensations could be due to a nerve thing in your ankles.
a rehumatologist will run blood work for various autoimmune deseases which by the way sounds more like your problem but not als.

 

[robNorman]

thanks, Ill enquire about that as I think I need to see GP again as they seem to have forgotten about me . I went to orthopaedic doctor just under 2 weeks ago and they gave me some blood tests and said theyd send me for an EMG if blood tests were okay. Ive still not heared back from them though on either the appointment or the results. Id feel better if I knew a date I could focus on, its the waiting which is really irritating but I think Ill book to see GP to follow up. Woke up today with a stiff muscle at the back of my mouth and under chin, like its been overstretched when yawning. I know that some symptons can start in the face but this has kinda been like the other things where you just notice one day that its aching. Not really been noticing progressive weakness just one day it feels stiff and dont get better. My achey wrists started pretty much suddenly too, one minute I was in a meeting the next they just started hurting and couldnt move them much.

 

[robNorman]

both feet - fascilulations I think, mainly in big toe and inner foot. Right foot slightly worse. Can still bend toe but feels very stiff and awkward on both feet, right slightly worse. When I bend right toe it can shake a little, this doesnt always happen though. Right toe can often move sideways on its own which is wierd and can cause cramps when it happens, dont think I have any of the babinski signs or anything and I dont think orthopaedic saw any of these. When I stroke inner foor it can cause toe to move. Have had previous difficulty with walking but this seems fine at the minute as I just went on holiday for a week and was walking all day with no problems the only issue is when going downstairs I walk down sideways as I dont feel comfortable otherwise.

Hands - Feels stiff and get pins and needles in fingers. Ive had previous pain in the wrists but this comes and goes same with stiffness and pins and needles.

In throat feels a little pinched on side just between neck and chin but no real problems speaking or swallowing. These symptons seem worse when tired and I am often feeling exhausted lately.

If this was ALS would it appear like this at once? I have no over the top weakness everywhere just my ankles I dont feel steady on but I dont belive I have foot drop which seems to be an indicative sign. Just annoying waiting still for stuff

Had my EMG waiting for results. Follow up is in 2 weeks. Is it normal to only have one needle in this as I was expecting more. I had one needle in my shin and nerve conduction done in fingers feet and ankles.

If the EMG comes back do more blood tests occur afterwards as Ive had some which come back fine.

Sorry for this rant, still concerned, its been quite a few months now since this all started and still nowhere and feel as though I need to try to reassure myself. I wouldnt feel as though Im totally anxious as sleeping okay and not worrying all night but its definately a concern

 

[LizT]

still NO als... JMHO

 

[notme]

HI

I'd imagine they only did an EMG of the one leg because the symptoms started there? Your symptoms sound like joint issues--seriously--I'm rather surprised they did an EMG at all--though the 'burning' feeling may have prompted it.

I don't know if I have ALS or not--but I do know that my symptoms mimic it enough to have an ALS neuro concerned--so, let me tell you that my first 'symptoms' that sent me searching for answers was inability to use my hand. I couldn't do things like push the top of my hairspray--push the buttons to unlock my car doors--not it was 'hard' to do those things--I simply could not. There was severe weakness--followed by major atrophy. There was no period of 'getting better'--just progressively weaker. And still--it's entirely possible that what I have is NOT ALS. Within a year or so--symptoms have moved to my legs--but in my legs--it's weakness and severe spasms and cramps. The only fasciculations I've had are on my face and my arms--but then--I don't look for them, either.

I have joint issues also--but I'm also 50 and have the AM stiffness--it's not at all related to the ALS symptoms I'm having. Try to not worry. I agree with, I think it was olly--see a rheumy to see if there is an auto-immune thing going on.

I'm not really sure which symptoms you think are ALS-like

 

[robNorman]

I think its because I feel there are definite nerve damage as I sometimes get tingling sensations and pins and neddles and the fascilations in my feet and hands which worry me. The toe moving on its own accord is always odd to witness when it moves sideways away from the foot, the fact that my right foot hasnt been good in ages and still isnt proper healing, just glad that its good to walk on again but its still never fully healed. I never worried about it but its when I started to get odd feelings in hands and other foot/ankle that I got a bit more concerned.

 

[Alyoop]

It's definitely not ALS. So let it go! You have mainly sensory issues. It's more likely to be MS, than ALS. Why don't you ask questions on an ms site. Or better wait patiently till you find out what the ncv showed?

You dr has it under control and is infinitely more knowledgable than anyone here!

 

[trfogey]

I think its because I feel there are definite nerve damage as I sometimes get tingling sensations and pins and neddles and the fascilations in my feet and hands which worry me. The toe moving on its own accord is always odd to witness when it moves sideways away from the foot, the fact that my right foot hasnt been good in ages and still isnt proper healing, just glad that its good to walk on again but its still never fully healed. I never worried about it but its when I started to get odd feelings in hands and other foot/ankle that I got a bit more concerned.

The sensory part of your nervous system is separate from the motor part of your nervous system. Just like the fuel system on your car is separate from the cooling system, even though they both are made up of tubes and both run back to the engine.

Your symptoms are sensory in nature, not motor. You have no clinical weakness, no paralysis, no spasticity -- nothing that indicates a problem in your motor system. ALS is a disease of the motor system. If you have no motor problems, you can't have ALS.

By continuing to worry about ALS, you are like a person who notices that his car is almost out of gas and pulls up to a water hose instead of a gas pump. Hey, they are both liquids, aren't they?

 

[Alyoop]

Now that is the best explanation ever trfogey. You keep coming up with them.......classic. I once worked with a brilliant oncologist who could use the most amazing analogies when explaining things to his patients. You remind me of him

 

[robNorman]

thanks for responses, Ill try not to worry about it. I guess its the twitches and movement and weakness in my feet which led me to this site. I know that I shouldnt read through these pages

 

[sportsfan]

Het rob your symptoms sound very similar to mine to a tee.My first symptoms was a charlie horse on my right leg,then i started to notice my calves were noticably smaller in size, i started twitching on my legs , under my lip, my left nostril feels like its on fire,my left ankles feels like its got a vise grip on it and my toes and fingers on my leftside got numb and tingly.my shuolder feels sore and the whole side seems weaker.I ve had a negative brain mri and a clean emg on all limbs but symptoms wont subside.I dont know what to think and i ve figure if its als it ll rear its ugly head down the road.My advice is to have all your limbs checked plus your neck also.Unfortunately ive read where some people have to take 2 or 3 emgs before it ll show .Wish there was a darn blood test for it.It would help people get answers sooner good luck.