Please help

[scaredashell]

I would like some help on this issue, I am really scared about it..
I have severe upper back/neck pain that comes and goes, mostely comes it seems lately.. I have had this off and on for maybe 5 yeas, but in the last two it is more and more. I have also began noticing that in the areas of pain, I have alot of twitching in those muscle groups. I generally have allover twiching, neck, back, arm, leg, you name it, moreso on my left knee area, or the muscle above it. It is always crampy and twitching, but no actual weekness that I can find. One thing that scares me is that I often have what seems to be premature muscle fatigue, burning and stuff of certain muscles at times. Like arms for example when I have alot of the pain in the upper back. I dont seem to have any strength loss, but lost of cramping and pain in many muscles. I have been twitching in different places for maybe 6 years off and on. I also seem to have a pulling or tightness under the tongue and have a hard time with certain words. I often feel a sort of buzzing or twitch in the tongue. I have read that pain and ALS dont go together, but I have also read many personal stories that said it does. I went to a neuro about 4 years ago for the twitching and percieved tremor. He did a physical exam and an MRI and found nothing, I went to a back doc and he did an MRI of the spine and found nothing. I know the EMG is the only way, but that doesnt help me now. What are thoughts on this issue?

[mamafigure]

You didn't mention your name, but having sx for five years makes ALS very unlikely. Having pain makes it unlikely. Premature muscle weakness is not the same as muscle weakness. Muscle weakness is falling.

Falling is the first major sign, generally.

Twitching is one of the last signs. By this time you are falling a lot.

There are lots of things that have your sx, but ALS doesn't seem to be one of them. I would look for another cause and stay away from ALS searches.

Mama

[flyingdogs]

Hi Scared,

Ditto everything Mama said. If you've had these symptoms, even on and off, for years, ALS probably wouldn't even be on a neuro's long list of possibilities. But a good neuro should be able to give you some answers about may be going on. And many will agree to do an EMG if only to ease your mind. The hard part is that while a neuro may be able to rule out ALS, they may or may not be able to offer you a clear diagnosis with a finite treatment plan. That's because, as my neuro explained to me, there is still a helluva lot of unknown territory in neuroscience. It is the "squishiest" of the medical specialties, and continually throws perplexing and complex patient presentations at docs who thought they'd seen it all.

If you haven't seen a neuro in 4 years, I'd definitely go now, and at least get your ALS fears behind you. Welcome to the forum, and keep us posted!

[lexiathedragongirl]

I would suggest seeing a good physio, someone who deals with sports injuries or post-trauma injuries for an assessment. You could possibly consider another MRI too to see if there isn't anything funtional happening in your spine or shoulder area that didn't show before.

I wouldn't even consider ALS, lost of other things could explain your sxs before even going there - and your sxs don't match the usual pattern for this illness.

I also recommend trying relaxation and exercise to ease tension in these areas. Lots of people on this board suffer similar probs and find most exercise difficult, but things like stretching, simple yoga, Tai Chi etc help move the muscles without putting too much aerobic stress on them.

[scaredashell]

Thanks for the info, but what about my speech issues and tongue stuff? It seems like my tongue does not work right, sticks out kinda sideways... looks like its twitching all the time. Would I have considerable speech problems if I couldnt stick out the tongue? WOuld it work sometimes and not others... I just dont understand the pulling and difficult speech

[lexiathedragongirl]

Remember the tongue is a muscle like any other part of the body, and can be prone to twitches as well. If you are having neck problems, this could be transferring into the nerves in your facial area. A lot of people with twitching do find problems with facial twitching at some point during their battle.

If your tongue is being affected (again something that people here have experienced) then it can affect your speech and make your tongue feel like it isn't working properly. The next thing too is if you are very conscious of this problem, then you can end up in a catch-22 situation where stress about the problem makes it worse.

Most bulbar-ALS affected people don't even realise there is a problem until someone close to them points out their speech is a bit funny. The decline in bulbar sxs is usually very dramatic, talking weeks to only a few months between onset of bulbar-sxs to complete inability to use these muscles effectively.

Lesions of the pyramidal tract can affect this area - have you ever had a brain MRI? There is a huge list of possibilities that could be causing your probs. You should consider going back to a neuro for reassessment if they are causing you problems in quality of life and pain.

[Matuboo]

Pretty much agree with what's been said. It's not the pain so much that makes ALS unlikely but the time in which you've had these symptoms for, five years! Most PALS are fortunate to be alive after five years much less walking and pain can occur with ALS but from what I've read, it's usually cramp related. The burning, the "off and on" AKA waxing and waning, none of this sounds anything like ALS and most importantly, we are talking about a long period of time here.

My moms best friend was diagnosed with ALS last year, after having symptoms for six months, she can't walk or do much of anything now. A rapid decline is very common, not universal but common. Are there people who have ALS and make it to the five year mark? Sure, but not without having some serious weakness and lots of help, from a caretaker, just to get around and live their lives. You don't have it.

The mouth stuff is something I've experienced, I just posted about swallowing issues a day or two ago.

As far as the pain is concerned, if it is making it difficult for you to function than it might be time to get help for that, through a pain doctor or otherwise. Chronic, intractable pain can really destroy the quality of your life!