Any advice would be really welcome...

[Benji]

Hi everyone,

This is my first time on here - but I have been reading for a while and am really appreciative of the input from everyone on here. I would welcome any thoughts on the below...

About two years ago my grandfather passed away from Bulbar onset ALS, and although it probably has no relevance to my issues - it is something that has kind of underpinned all my concerns.

I had recently been in hospital, admitted for feeling of tingling sensations in my hands, calves and feet. I had CT, MRI and Lumbar Puncture all of which were clear. I was relieved as this discounted MS etc. At this point I must add that ALS wasn't really in my mind.

However, since leaving hospital about 2 months ago, I started having a shaking or twitching sensation in my right hand thumb, ring and pinky finger - though this is intermetent and not constant. I thought/think my hand and forearm/inner elbow feel a weak and ache constantly, along with a real stiffness straigtening out my hand. That lead me to look up a few strength tests, all of which I can do and have no fine motor issues like shoe laces, buttons etc.

I then began to get body wide twitches, predominantly in my left arm, chest and left calf.

I have only really started to become more concerned over the past 5/6 weeks as I started to feel a real weakness just above my left knee (front of leg), almost like a dull ache and felt like it was making me limp. This has since progressed to a sharp, cramp-like pain which again comes and goes. I must add that I can still do all the lower extremity strength tests and run, play football etc.

Having read most of the posts on here (which probably hasn't helped - as I may well be putting 2 and 2 together), I can see that some of my symptoms mirror ALS, but the order of things are a bit different to other people. I originally thought that the weakness and cramping must come before twitches, but there seem to be contradictory information to this - and that is where I am most concerned.

I do have a lot of lower and upper left back pain also. I feel a lot better for getting all of that off my chest, it has practically been eating me alive.

Any thoughts anyone has on this will be greatly appreciated, I really am in awe of everyone here and hope you don't mind me posting this - I am sure you get lots of concerned people here daily.

Thank you in advance.

 

[nikolab]

Hi Benji,

itching is not a symptom of ALS. How old are you?

Nikola

 

[Tokahfang]

If you've read the other posts, you probably already realize that your symptoms have far more in common with BFS than ALS. Sadie even posted a link over to their forum on multiple occasions, and they have a fantastic chat room, too.

If you take the twitching out of the picture, you sound like a guy (gal?) who should go to your general practitioner or a rheumatologist for knee pain. Or perhaps stop running and playing football for a few weeks.

Furthermore, think about your post and read it again. You say you began to feel "real" weakness, but you can pass all the strength tests. That means, medically speaking, you're not weak.

This worry you have that drives you to ask questions when you've already read the answers, tested your strengths, etc, that's what you need to address. The BFSers will help, go back to your neuro if you want that extra look, but don't sit around worrying about ALS. The anxiety wil be more crippling then your knee pain and twitching ever could be.

 

[Benji]

Thanks for the posts guys. I'm a 26 y/o male by the way.

My real concern had come from the shaking/twitching in my fingers, as I know that can be a starting place for ALS. When my calf cramped up as it did, I started to worry a bit more.

I appreciate what you say, and will possibly try and seek some answers about if my back pain is playing any part in the finger/hand issue and links to the leg pain... I don't know, but you're right, the worrying doesn't help!

Theoretically, would I expect my right hand to weaken before any spread (e.g. to left calf) in the case of ALS?

 

[HelenL]

Benji, good advice above... honestly I don't think you have ALS to worry about, the weakness that starts it comes on so slowly you don't realize it... such as tripping on a rug constantly, you think it's your shoe that's loose. The pain and cramping started afterwards, the twitching I still don't really have much of.

Speaking of twitching specifically, do check out the BFS sites, but also look into taking some Vitamin D and B12 and see if that helps... stopped most os my twitches... eating better and less anxiety will help you.

Good luck, and keep us posted!

 

[Benji]

Thank you for all that advice. If I can ask a question? Were you able to still do all your strength related activities whilst you found yourself tripping on stuff? I've clipped the pavement a few times I've noticed, nothing constant by any stretch of the imagination though. I can still do all the heel-toe stuff, jump steps etc.

Thanks again for your insight

 

[Ms. Pie]

No, i couldn't open those little black binder clips when it first started in late 08. I didn't think much about it. A year and a half later I couldn't write unless I held my pen with different fingers and could hardly climb the stairs because of leg muscle weakness. It sneaks up on you. No pain or tingling or cramping was involved in the first couple of years that I remember. When tested at that point I had a changed gait and could hardly stand on my toes and could not walk or stand on my heels which I used to be able to do easily shortly before this time.

Everybody in the whole world trips occasionly. Everybody twitches and thinks nothing of it or doesn't notice it at all.

It sounds like whatever is bothering you is relatively minor and treatable. Have you tried ibuprophen for your pain? Please stop scaring yourself by reading these threads and stop wasting your life worrying about every pain and twitch Dear! Enjoy your youth!

Hugs to you!

 

[CathyP]

I started out with ankle WEAKNESS which caused me to trip ALOT because my ankle would turn outward if I stepped on just the least bit of uneven ground. I had originally thought I had just sprained my ankle and that was why it was WEAK and would turn over so easy. I do remember every time my WEAK ankle would turn over that it did NOT have any pain and thought that was strange. I started limping trying to put my weight on my other good ankle to keep from tripping as much. Once my WEAK ankle started tripping me it NEVER got any better and only got worse. Horrible evil cramping I have never had before in my life started in my leg about 9 months AFTER the ankle weakness. Very noticeable twitching started about a year later.

 

[sadiemae]

Speaking if itching, it is a MAJOR problem with PALS. I am sure you meant to say twitching Niko. Not to hijack the thread, pm me if you need advice in How to control itching issues. Not twitching, ITCHING

 

[Benji]

Thank you again for all of your input. I respect everyone on here more than I can put into words. I am feeling more comfortable in the knowledge that any perceived weakness, cramping, twitching is fairly intermittent and not constant. I may schedule an EMG for further clarification - from what I've read thats the most definitive thing to have done to rule out ALS?

 

[notme]

Issues within the hand and lower arm are quite possibly related to a nerve being impinged -- at the elbow-- so it won't show up on the MRI you had. First thing to check.

As for diffuse joint pain--it just happens. Pain isn't an early indicator of ALS at all.

We've posted several times on weakness verses perceived weakness. In 'feeling weak' doing simple things makes your muscles seem tired. In 'being weak' you can't do things like lift a gallon of milk. Button a shirt. Turn a door handle. Not difficult to do-impossible to do.

As said, with the lower extremities, it's things like repeated trips and often falls caused by foot drop. The muscles that control the movement of the ankle get damaged by the nerves being fried--and don't work. so when you lift the foot, the ankle 'drops' and the toes smack the curb or carpet or whatever is there. You would NOT be able to do the running, jumping and strength exercises and all. You just wouldn't.

Now, all that said, I'm not qualified to tell you nothing is wrong with you--but I'm very confident that it's not ALS. Continue to work with your doctor. Also, numbness and tingling are sensory issues--ALS does not affect sensory nerves-but again, some things do.