Running out of possibilities

kenwood54 · 08-05-2012, 11:05 AM

Hi all, new user here and wondering if all the signs are pointing to ALS. I'm a 40 yr old male. Symptoms are as follows: pretty significant weakness in my left leg and left arm. Both legs are really stiff and walking is becoming more troublesome seemingly by the day. I have trouble squeezing a tube of toothpaste or buttoning a shirt with my left hand. Also have some pretty bad cramping in my feet and also in my left hand if I try too hard to use it (for example when I squeezed the neuros hand during exam my hand cramped up bad). Also occasionally have problems swallowing and my voice has definitely gotten more weak, noticeably so to my friends and family. Finally, the "twitching" seems to happen everywhere, cant really nail it down to just one place. When the symptoms first started, about 6 months ago, I really just noticed my left leg was a little weak and I was dragging it a bit if I had to walk quickly. I've had both hips replaced so I just assumed for a while it was a problem with them but all tests on the hips came back clean. When I started noticing the symptoms on just my left side my GP sent me to the ER with concerns over stroke. I went to the ER where they did an MRI of my brain but that came back clean. Back to GP and he thought neuropathy because I quit drinking about 4 months ago. Once I finally saw a neurologist his first thought was cervical stenosis and ordered an MRI of my neck and back. Those also came back clean so now have an EMG set for this Friday.

Sorry for the rambling but this weekend my mind has been racing with the possibilities and, of course, with reading stuff online it's led me here and really concerned about ALS.

To all the experts here, do these symptoms sound familiar or sound like ALS? I know I should just relax and wait on the tests and the docs to figure this out but can't stop thinking about it. Any advice or assistance would be greatly appreciated!

Thanks!

kenwood54 · 08-05-2012, 09:02 PM

Oh, one other thing, neurologist did rule out the neuropathy.

Thanks again for any advice!

edwards5256 · 08-05-2012, 09:11 PM

I wish you the best and hopefully someone that has been diagnosed with ALS will give you their input soon.

brooksea · 08-05-2012, 09:29 PM

Have you had a nerve conduction study? How did the neuro rule out neuropathy? This does not sound like ALS. It just doesn't happen so quickly. It is insidious. Relax and wait for the EMG, but be aware you should ask for the NCV.

kenwood54 · 08-05-2012, 09:35 PM

Thanks brooksea. Ruled out for the neuropathy was a bit overstated, he said there could be a little in my left foot but after a couple of exams from him he doesnt think neuropathy is the cause of my problems. Haven't had the NCV, will ask him about it on Friday. What really got me worrying was the urgency in his mannerisms for scheduling the EMG.

Ms. Pie · 08-05-2012, 09:37 PM

Wait for your EMG. Make a list of questions you want answered. We are not doctors and should not and cannot diagnose you. Please let us know what they say.

kenwood54 · 08-05-2012, 10:05 PM

Thanks Ms Pie! Think I do need to relax and wait on the tests, the waiting and wondering can drive ya nuts though!

notme · 08-05-2012, 11:46 PM

The waiting and wondering can drive you nuts, yes. In that light, I'm going to make a few comments that might ease your mind.

First--of course profound weakness and not being able to do something as simple as squeezing toothpaste is a sign of ALS--and about a hundred other things as well.

Als can progress slow--but your post sounds like these issues have been in a matter of a month or two. It's not normally that fast.

Neuropathy and myopathies can ONLY be diagnosed with NCV and EMG. Muscle weakness can have a multitude of causes. Als is only one of them. not all of them are even related. Sometimes, it's within the muscle itself, as in myopathies. Other times, it's within nerves, as in neuropathy, trapped nerves in the elbow can affect the hand, believe it or not.

Twitches 'all over' are not normally seen in ALS. The fasciculations in ALS happen after damage has been done. There is actually usually some level of atrophy by the time it presents. Stress over wondering about ALS can even cause them.

Same with Bulbar (mouth) issues. If it started, for instance, distally, in your dragging foot, it would take quite a while normally to reach the bulbar region, for instance. Oh, and for foot dragging--that's normally constant, not just 'sometimes'.

We have a saying here that's in my signature...it can only be ALS when it can't be anything else. You still have a LOT of 'something else" possible here.

Even a history of drinking for years can cause imbalances in your system that can screw up muscles and nerves.

Try to relax and wait for the EMG

kenwood54 · 08-06-2012, 04:47 AM

Thanks again for all the help! The foot dragging/stiffness is a constant thing. That being said I'm going with your saying, only when it can't be anything else! Hopefully a busy week at work will take my mind off of all the possibilities and I'll let everyone know on Friday what the results are.

Thanks so much for all the thoughts and advice and God bless each of you fighting this terrible disease.

Kenny

Tokahfang · 08-06-2012, 09:42 AM

I found the answer to my question in your post, I had bad reading comprehension this morning apparently!

kenwood54 · 08-06-2012, 01:16 PM

Re-reading my post to see if I can find my answer then! LOL

HelenL · 08-06-2012, 10:10 PM

While the weakness and cramping certainly could be ALS, it seems like it's on your left side only, which is NOT how ALS usually progresses.

I think the there may be some answers in your hip replacement and/or the drinking... both can cause dropfoot, and other neuro issues.

Wait for your EMG, hoping its clean for you!

Tokahfang · 08-06-2012, 11:33 PM

Quote:

Originally Posted by kenwood54

Re-reading my post to see if I can find my answer then! LOL

I somehow missed your doctor sending you for tests after worrying you'd had a stroke until after I posted my reply. It sounded a lot like silent stroke.

kenwood54 · 08-07-2012, 07:17 AM

Beky, stroke and MS were the first thoughts for all the docs until the brain MRI came back clean. Neuropathy was up next and stuck with that for a while until I went to my current neuro for a second opinion. After he did a long physical exam and we talked for a while he didn't think it was neuropathy causing all the problems. Another set of MRI's on neck and back came back clean so next up is the EMG on Friday.

ottawa girl · 08-07-2012, 07:32 AM

Good luck on Friday. Hope and pray you get good news!