ALS symptoms? Please help!

[jim1650]

I am looking for some help with some things I have been going through and would like to get some experts opinions on this forum. 30 year old male in need of help. I am highly anxious and have a history of worry regarding health.

My history:

Ever since I can remember (a kid) I would get pain in upper part of both arms. Would come and go seasonally, and never did cause much concern to me other than occasional discomfort.

Nov 2008 - Pain in both shoulders, upper arms is very prominent during weight training. Would hurt when sleeping, and felt like a specific range of motion would cause pain (moving arms above head). Deep tissue massages in Summer 2009 relieved pain almost completely overnight, but still left some minor joint issues. Trainer says I have AC joint issues. No loss of strength.

Oct 2009 - stopped working out (at peak of health) because of time commitment.

Dec 2009 - Developed pain during day (like over exerted muscle) in right side of leg, with focus on back of thigh, leg, foot, and toes. Pain was burning/aching similar to how it feels after a long day hiking. Continued for a few days, then turned into dull muscle ache, then faded to a slight 'odd/weak/numb' feeling in back of thigh, leg, buttocks. Would occasionally get burning sensation in leg/feet when sitting. Couldn't seem to flex calf as much as left leg, although it was rather minimal. Continues to this day, although has diminished to the point where I sometimes wonder if there is anything there. Muscles just feel not as tight and a little lacking/numb?

1 week later - Right arm felt odd during workout. Still had strength, but minimal sensation down arm/wrist as well as 'light' feeling in arm. Continues to this day.

At this point, MS is my primary fear. Anxiety level through the roof, can't stop thinking about symptoms, etc.

1.5 weeks later - Developed tightness/soreness in right side of face/eyes/teeth/jaw/back of head along with clicking/fullness in right ear and balance loss to right. Always feel something there, but comes and goes in intensity. Lots of fatigue. A few drinks made me feel dizzy and I got sick. Gums on right side feel sore, look puffy. Continues.

Jan 2010 - Left big toe had pins/needless/sore feeling when moving it around. Slowly spread to other toes over 2-3 week period. Changed from pins/needless to a tight band feeling around the toes, to an 'odd' feeling in toes. When stretching toes, toes doesn't spread out like right foot. As well, when pushing down toes to ground, toes on left side seem to collapse to ground quickly at first joint. GP said a result of flat feet?

1 week later - Difficult to push when going to the bathroom. Not sure if it's just me or if I am dreaming it up, but feels like area is 'looser' down there (sorry for graphicness).

At this point I was convinced I had MS. Then I read about ALS and started to worry about it. Started developing twitching/shaking/buzzing everywhere on and off. Leg shakes and skin vibrates when standing on one leg/bending down.

1 week later - Developed tight feeling in top of throat. Swallowing feels more difficult at top. Focusing on mouth, feel like tongue is big, hoarse voice, swallowing a lot, sometimes dry mouth, sometimes white tongue. Feel like I am slurring my s's, but only when I pay close attention to tongue movements--people I ask say I sound the same.

Feb 2010 - General fatigue all over. Have gone to looking over ever square inch of my body. Dents in lower back (both sides), back of calves, face feels smaller, cracking joints everywhere. Muscles feel tired and sore, left leg feels crampy, lower back feels sore.

2 weeks later - massive cough, spewing up yellow/clear phlegm, deep in lungs. Feels like cold, runny nose.

During Jan/Feb I had an MRI and neuro workup. Consistent brisk reflexes throughout, otherwise all good. Neuro said no MS, told me not to worry about ALS, and said I am suffering from anxiety. MRI showed a few small white spots on right side which he said was so common it could be considered norm. Nothing indicative of ALS or MS. Did find disk bulge on lumbar pushing against nerve root on right side. GP says everything looks normal minus some severe anxiety issues. GP has put me on Prozac and Adivan and have helped me calm down, but I am still all over the place with worry.

- Do my symptoms sound like ALS?
- Can ALS present from nothing to all over the place in 3 months or shorter?
- Any advice for a suffering young man?

Sorry for the long post.

Please help. Thank you.
JP

 

[jim1650]

Forgot to add, when I press my tongue back all the way in my mouth, and do the 'awwww' thing, the left side of my tongue at the back is much higher than the right (same side I feel difficulties swallowing).

Thank you
JP

 

[trfogey]

- Do my symptoms sound like ALS?
- Can ALS present from nothing to all over the place in 3 months or shorter?
- Any advice for a suffering young man?

- No
- Never heard of it doing that.
- Listen to your doctors and stop reading on the Internet until you have a firm diagnosis. Only fools try to diagnose themselves.

 

[peter57]

I second and third for that matter trfogey's reply


cheers
Peter

 

[Al]

No it doesn't sound like ALS to me either.

AL.

 

[AndyDJX]

"when I press my tongue back all the way in my mouth, and do the 'awwww' thing, the left side of my tongue at the back is much higher than the right"

Try and avoid crazy self tests like this; you'll only drive yourself nuts. Those are just bodily idiosyncrasies you would have never noticed before, but now that you're experiencing health problems, you're searching. ALS doesn't present like that.

 

[jim1650]

- No
- Never heard of it doing that.
- Listen to your doctors and stop reading on the Internet until you have a firm diagnosis. Only fools try to diagnose themselves.

Thanks for the reply. I guess I am having a very difficult time understanding what I am going through. I am highly anxious and can't seem to stop down this route. I know I shouldn't diagnose myself, but I am trying to relieve some of my ALS fears by asking the experts here?

From your and others experience, what of my symptoms don't line up with ALS? I feel I am weakening all over fast and that ALS is the likely cause, but I hear no. How confident should I feel I am dealing with something else?

Please help.
JP

 

[Zaphoon]

You should feel VERY confident you don't have ALS. You've had thorough examinations by highly trained, highly skilled doctors that report NO ALS.

Your self-confession and subsequent professional diagnosis and treatment for anxiety should be telling you something: you anx over things like this to an excess.

Any one of the people on this forum that have a diagnosis of ALS would gladly trade diagnosis with you.

I'd forget about ALS and keep taking the meds you've been given for your anxiety.

Congratulations on the "all clear" you've been given from ALS.

Zaphoon

 

[jim1650]

I fear that the doctors are lining up a diagnosis of anxiety in front and ignoring the real symptoms I am presenting. I can't seem to get through to them that I feel this way. I have not seen a neuro specifically re. ALS nor had an EMG, but I am trying to push that way.

The worst is the exhaustion and balance issues. The face tingling/soreness on the right side doesn't help either, especially in light of my throat problems. Anxiety? really?

I am the kind of guy that has a hard time believing unless there is a thorough explanation. I have been told my symptoms don't match to ALS, but have not been told why. Help!

JP

 

[irismarie]

please believe us and the doctors. I t does not resemble ALS. You are lucky. Why waste the best years of your life worrying?

 

[Phil M]

I also say no to ALS. The only pain with als is in previous joint injuries IMO. I have had a hurting neck for 20 years, or more, and als has compounded it some. Other that that, Its not that painful for me. I'm not a Neurologist, but I play one on TV.

 

[trfogey]

The main reason that you should stop worrying is that a competent neurologist has told you to stop worrying about ALS. The reason that he says that is because you don't show the symptoms that he is trained to recognise. Given the fact that he spent the better part of ten years getting that training, as opposed to your handful of hours misinterpreting poorly written Internet sites, leads me to think that he, rather than you, is correct.

If you aren't going to listen to a neurologist about this, what can we tell you that is better suited to get through to you. If you don't believe what he told you, get a second opinion, and a third opinion, etc.

 

[jim1650]

I think the thing that worries me is that my neuro who did the exam was an MS specialist. I assume his testing was focused on that which was my concern at the time. I asked him about ALS and he told me about the disease, and said I didn't have that. I am worried that he didn't look specifically for ALS signs. I didn't have an EMG either.

Is this reason for concern or are my symptoms just not inline with ALS?

Thank you all for your help. I am struggling with this one obviously, but the discussion here is helping me cope.

 

[joelc]

ALS diagnosis is done by excluding everything else. There are no specific tests for ALS. All tests are done to exclude everything else, once that is done and they don't reveal some other disease then ALS is what they diagnose you with.

 

[rom623]

Jim1650,
Did you take any medicines around the November/December 2009 timeframe?

And are your symptoms fluctuating over time (feel weakness, then it seems a little better, feel weakness somewhere else, then a little better, etc.)