Old 10-26-2009, 09:45 AM #1
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Default A Few Quick Questions...Promise

Hi All

As you can likely tell from the thread title, I do feel somewhat guilty for posting and asking for your thoughts, when there are so many others with more pressing concerns. I am the type of person who never, ever likes to bother anyone and ask for help. I would like to preface my questions by further stating that I only joined and posted after 8 weeks of symptoms and 3 weeks of reading for many hours about als on many sites, including this forum. I simply reached a point where I needed to 'talk' to someone and ask some questions while I await my first neuro appointment.

For those who didn't read my background in my other thread posted last week, I'll briefly list it in point form.

-noticed food falling out of my mouth often in late August
-noticed slurred speech, excess saliva and nasal voice in late September
-during the past 4 weeks, speech, saliva and nasal problems off and on, trouble swallowing some foods (I just keep chewing), handwriting not as neat, tongue looks different, twitching all over, and all 4 limbs are somewhat awkward (stumble with left foot and right, drop things with left and right...equally).

Some of those things are more troublesome than others to me. Here are my questions/statements.

1. The most troubling change for me is actually the appearance of my tongue. It appears to be flatter, thinner and more pointy and I gag easily if I brush it or even stick it out as far as it will go. Presently, I can move it around really well. I've not really ever been able to find anything online about this type of change as a presenting symptom.

2. All 4 limbs seem to be weaker as the bulbar symptoms are progressing. I appreciate perceived weakness versus clinical, but I can tell you that I fatigue much more easily carrying things, writing or climbing stairs than I did only 4 weeks ago. It's completely symmetrical however involving upper and lower limbs.

3. During the past week, I wake up a few times during the night with at least 1 limb 'asleep' (pins and needles). Sometimes it's all 4 limbs like this morning. It has been every night without exception for 7 nights, and now even sometimes when I sit while driving or watching television during the day.

I guess that there are not any questions in those statements, but a sentence or a few words about each would be awesome.

Thanks. Sorry to bother you all.

Have a wonderful day.
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Old 10-26-2009, 10:57 AM #2
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Default Re: A Few Quick Questions...Promise

Hi Rythman,

I have also been on here asking these kind good people as many questions as you have my friend. I don't know much but one thing I DO KNOW from all the Neuros etc I have met with is that ALS is a motor issue and not a sensation based illness, I am like you where I perceive weakness as opposed to clinical, I also wake up in the middle of the night with parts of my hands numb etc. ALL Neuros that I have seen have said what goes in my favor against this terrible illness is that I have sensation issues and this is almost certainly no part of ALS. It's motor based and not sensory based.

Have you been tested for MS/Lymes?

Hope someone else can confirm this and hope this makes you feel better

Cheers

Andy
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Old 10-26-2009, 01:57 PM #3
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Default Re: A Few Quick Questions...Promise

Hello Rhythman

From what I recall, you have had similar symptoms for the last 30 years. It certainly seems to me that your present symptoms would be related and would point away from ALS (take comfort in the fact that they have come and gone, which is not what ALS symptoms do).

As for your statements:

You state that your current symptoms wax and wane and have come about in a matter of 4 weeks. That is simply not the story of someone with ALS. Again, symptoms do not typically wax and wane and certainly do not present in such a global fashion in a matter of 4 weeks, unless you have been completely unaware of your body (I highly doubt that). The sensory symptoms also point away from ALS.

You certainly have something going on but it certainly doesn't sound like ALS to me. If you're not getting answers from your current physicians, then I would go elsewhere. I'm not familiar with where you live but I'm sure there have to be reputable places near to you that can shed light on your condition.

Good luck.
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Old 10-27-2009, 11:03 AM #4
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Default Re: A Few Quick Questions...Promise

Thanks to both of you for the info and reassurance.

I typically have always been able to ignore most symptoms of any kind and rarely go to a doctor. I always feel that occasional aches, pains, etc. is part of being alive. The reason that this has troubled me, enough to join a forum like this, is because of the seemingly rapid progression of unusual symptoms.

I have had 'episodes' before but always left side only. These are different. Every day I wake up and hope there will be a reprieve, but for several weeks now every day seems to see something a little more troubling.

Last night I went to the gym, and ended my workout with jumping rope, as always. This time however, when I did my 1 foot jumping, my left was fine, but my right kept rolling outward. I simply could not do it without my foot rolling that way and my body 'flying' to the right. Of course I wondered if this is the beginning of some 'foot drop' thing. I fell asleep wondering that, and awoke this morning with my right foot and left hand completely cramped. I mean I had to sit on the bed and move my fingers in my left hand and toes in my right foot for several minutes to get the feeling back. When I sat having breakfast, my left foot -yes, the other foot-'fell asleep' and buckled upon standing. The bulbar issues are still there too.

I just don't know what to think about this 'onslaught'. This is the first time in my 40 plus years that I've ever been frightened by any symptoms...ever. It's strange.

Thanks for listening.
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Old 10-27-2009, 11:51 AM #5
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Default Re: A Few Quick Questions...Promise

Hi Rhythman - Maybe you should call your neurologist's office and ask them to let you know if they have any cancellations, see if they can squeeze you in sooner. Whatever is going on, if it is getting worse it is something that should be looked at ASAP.

You mention that you have previously had some neurological episodes, but with much more limited symptoms. I wonder, how long did they usually last, and how does that compare with the duration of the symptoms you are experiencing now?
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Old 10-27-2009, 12:40 PM #6
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Default Re: A Few Quick Questions...Promise

Hi Hal

Thanks. I am trying to get in...no cancelations yet, but they said they'll get me in as soon as possible.

The other episodes lasted anywhere from a couple of weeks to 3-4 months. It's funny because I seem to have what happened before (including the fuzzy left eye vision and black spot in the same eye), but all limbs and bulbar this time.

BTW, I thought I read in a post that you went to your doctor last Wednesday. Hope things are okay with you and you are well.
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