Unread 02-17-2015, 04:25 PM #1 (permalink)
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Question My previous thread is closed. 5 Questions

Hello, I am sorry to be back. I visited the other thread I opened, and it was closed, so I am starting this one.

http://www.alsforums.com/forum/do-i-have-als-als/27574-various-questions-regards-als.html

Not sure if some of you remember me...although I've been away, I haven't forgotten any of you.

I am reaching out because I came far...pretty far in my physical and mental treatment and was doing well....until I fell down the stairs during the weekend.

Since I've posted:

The left/neck shoulder has gotten worse, but I was EMG´d in my shoulder and forearm and also had an SEP test on that side, and it was OK. I am in physiotherapy for it, and the weakness seems to have gotten a bit better, but the pain is still around. Potentially a cervical facet joint or herniation problem.

My left leg issues came back, where my leg felt heavy and clumsy. I fell down the stairs. Did not hurt anything further, but it was a bad fall. Lots of bruises. This threw me back to point ZERO in my anxiety. I kept thinking that it was my left leg that missed something. Today at the neuro, he did a complete strength and reflex test and I was OK.

Question #1 for opinions: If I fell, and it was due to something neurological in my leg, do you think the Professor Neurologist have found it in a strength and reflex test?


Also, the Ganglion cyst which was supposedly causing my right hand weak grip and atrophy, is gone, and my hand/arm healed...but the weak grip and atrophy is still there. This is my main concern right now. Some points and then 3 more questions for opinions:

The grip feeling/progression in my right hand started over a year ago. It is still just within the grip space (between first finger and thumb on dorsal side). Did not spread to any other points, nor has it gotten worse, just kinda stayed constant after a certain point. Thenar is full, no change. I have full strength and normal reflex in the neuro clinical test. Neuro acknowledged the shrinkage, but does not feel it is typical MND shrinkage. The sunken area is more around my thumb joint and in the anatomical snuff box. My surgery went well, healing went well, no problems. As the shrinking was progressing last year, I had all sorts of sensory issues like pain, pulsating, tingling. I do not have any twitching in this hand. Maybe like 2 per day, like as in any other part of my body.

I am getting the EMG of my hand next week on Wednesday for the first time and I am freaking out.

Last 4 questions:
  1. Does this sound like how ALS atrophy would progress?
  2. Do any of you think I should be worried about the EMG results, based on the above?
  3. Is it a good sign that my hand healed ok (example: if ALS were in my hand, do you think I would have had problems healing (like, my hand is functional to how it was before)?
  4. How
common would it be in ALS where ALS is affecting a distal part of a limb (hand) and the person also falls?


I appreciate everyone's time and thoughts to help me.
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Unread 02-17-2015, 05:55 PM #2 (permalink)
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Default Re: My previous thread is closed. 5 Questions

Hi -- ALS/MND is a scary disease to consider/fear. We empathize. This note is not to deter you from your investigations, but just so thoughts on how we can help each other ...


Here are some first considerations that may help:

#1 - Read the STICKIES at the top of this forum. Many questions are answered there. 99% of new questions are addressed.


#2 We are not doctors or diagnosticians, but people who are dying from or caring for people with ALS. Some of us have to type with one hand, one finger, via dictation, or even with our eyes, so reading/replying to the anxiety-ridden can be very tiring.


#3 if you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!


#4 an EMG, properly done, is the gold standard test for ALS. But also, an abnormal EMG can indicate HUNDREDS of other, non-fatal, diseases. So listen to your doctor.


#5 ALS does NOT present with pain, cramps, or fatigue. In ALS, you feel perfectly normal but your muscles simply won't work. Typically, the first sign of ALS is a foot or a hand that inexplicably just won't lift up. It doesn't hurt or feel weak, it just is limp. That is paralysis.


#6 ALS is about failing, not feeling, so forget the "feeling" symptoms


#7 If your main issue is twitching go to the bfs forum. If you have weird neuro symptoms try neurotalk. There are also forums for health anxiety.


#8 Your doctor is wise to look at other diseases. ALS is rare. In order for it to be ALS, it has to be nothing else.


#9 Many of us cough/gag/choke and/or can no longer speak. It is difficult to have anxious people constantly chasing this disease, when we can't escape it. There seems to be this cult of ALS wannabees/groupies. You don't want to fall into that bucket do you?


#10 Anxiety can be a real problem that can endanger your physical health. It is what leads many folks here to this forum -- it is a self-fueling fire. Try to avoid using google and/or this forum if you can -- if you cannot stay away and off this forum it should tell you something important!


Lastly, if you are still interested, go to alsa dot org or mda dot org ...


We sincerely hope you do not need to be here! But find out first. If you do need to be here let me say "Welcome, sorry you are here!"


-----
Max - Monday, August 18, 2014 12:03:01 PM
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

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Unread 02-17-2015, 07:49 PM #3 (permalink)
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Default Re: My previous thread is closed. 5 Questions

1.yes I would think so
2. No
3.no
4.are you saying due to surgery you lost some function and you are now back to where you were prior to surgery? Yes that sounds encouraging as a not ALS situation Please consider that non lethal localized nerve/ muscle issues may not improve if treatment is undertaken too late when damage is already done. Unfortunate of course.
5. If you have a problem with your hand but no problem with your leg other than a one time fall then there is no reason to worry about ALS. Everyone falls sometimes
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Unread 02-18-2015, 10:10 AM #4 (permalink)
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Default Re: My previous thread is closed. 5 Questions

Quote:
Originally Posted by Nikki J View Post
1.yes I would think so
2. No
3.no
4.are you saying due to surgery you lost some function and you are now back to where you were prior to surgery? Yes that sounds encouraging as a not ALS situation Please consider that non lethal localized nerve/ muscle issues may not improve if treatment is undertaken too late when damage is already done. Unfortunate of course.
5. If you have a problem with your hand but no problem with your leg other than a one time fall then there is no reason to worry about ALS. Everyone falls sometimes

Dear Nikki, it is very nice to hear from you! You have been in my prayers and thoughts! Note - I received a letter from Mass General ALS's center here in Germany thanking me for the donation to them with your name on it.

For #4 - I mean, I had weakness and atrophy before the ganglion cyst surgery. After the surgery, the situation is the same (no progression). My hand healed ok without any problems.

For #5 - I have a problem with this right hand (point #4), and I've had a problem with my left leg for a longer period of time. This is the leg that I feel gave out on me on the stairs. The neurologist said I had normal strength and reflexes. His physiologist sees this as a mechanical issue, that I am walking weird because I am trying to compensate, etc. But no EMG or machine tests were done.

Best regards!
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Unread 02-18-2015, 02:06 PM #5 (permalink)
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Default Re: My previous thread is closed. 5 Questions

Hi again. Thanks for prayers and donating to MGH!
So it sounds like the physio has identified something with your leg? What are you compensating for? A clean exam sounds great. Please don't let the fall throw you!
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Unread 02-18-2015, 02:53 PM #6 (permalink)
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Default Re: My previous thread is closed. 5 Questions

Physiotherapist saw that I was walking with my foot inward (subconsciously), and as soon as he asked me to turn my foot outward, I immediately had pains in my lower back. So he feels my body made me walk like that to protect me from the pain. And I've been doing so now for 1 year, which has put immense pressure on my left leg, and why I have hard muscles on the outside of my outer thigh, and why it is overused/fatigued. He's working with me to get it back in order, but I can't get over the fact I've had no recent EMG there and the fall down the stairs.

I had an EMG in my lower leg (shin bone muscle) in May 2014, before any of the real weak feelings started happening in my thigh. It was clean.

I am just going by the physiotherapist's analysis and neuro's clean clinical. Going back to that office next week for more physio and EMG in my hand. I'm shaking....
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Unread 02-18-2015, 03:27 PM #7 (permalink)
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Default Re: My previous thread is closed. 5 Questions

So it sounds like you have a back issue And that could certainly explain any issues with your leg!
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Unread 02-23-2015, 03:37 PM #8 (permalink)
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Default Re: My previous thread is closed. 5 Questions

Thank you again Nikki.

Yes it does seem my leg is from back issues. My concern is that my back issues and disturbed gait have to do with compensating because of weak muscles.

My hand....there are sunken in areas acknowledged by the neuro, this weak pinch grip, feels like it's getting worse. I am getting pulse-like, tingles/buzzes in various parts of my thumb (Thenar and back side of hand) , along with an occasional twitch (that I can definitely see and feel) thrown in. These come and go within just a few seconds. I am not getting any numbness so I am scared these pulse-buzz-tingles are small twitches that I can't see, but feel..... or they are fibrillations that I can feel, but I am not sure that's possible.

If these hand symptoms were due to ALS, wouldn't I be twitching a lot more? Wouldn't it progress faster? (First notice of symptoms 1 year ago and I still passed strength and reflex tests), and are twitches that you can't see mistakable for tingling/buzzing/pulsating feeling? I look verrrrrry close with a bright light on the area that is buzzing/tingling and can't see anything moving.

Any feedback for me until I see my neuro is deeply appreciated.
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Unread 02-23-2015, 04:19 PM #9 (permalink)
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Default Re: My previous thread is closed. 5 Questions

Oh, wanted to say that when I press on the vibrating/buzzing area, I can feel the buzzing in my other hand/finger. The feeling is comparable to how a TENS unit feels, in different frequencies.
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Unread 02-23-2015, 04:38 PM #10 (permalink)
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Default Re: My previous thread is closed. 5 Questions

That buzzing description seems to be common in people who come here who do not end up having ALS. It is nothing I have experienced or hear from other PALS. Fibrillations involve a single muscle fibre and can not be seen or felt.

Your thinking about your back is..twisted. You have no clinical weakness on exam why would you even think this?
And you had a surgical issue with your hand. It seems like 2 very different issues. Try to address each separately rather than trying to make them fit into a diagnosis that does not make sense.
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Unread 02-23-2015, 04:49 PM #11 (permalink)
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Default Re: My previous thread is closed. 5 Questions

You are very right, Nikki. Sorry for my panic and irrational thinking. It was the stupid fall down the stairs that set me back. I will go to my neuro and hope to stay just within his office and not come here. The time you take to read and provide your opinions based on experience is like an act of an angel. Selfless, caring and aiming to help others. Bless you! (And of course everyone else who reads and replies, all angels in my eyes)!
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