Losing use of my hands

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happy

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Learn about ALS
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Fair Oaks
I started working on Mon. it was very hard, but I managed. Last night I woke up several times because of a irritating feeling in my forearm. I noticed that I was losing the ability to move my left hand. Its as if I am losing the sensation to move it. The right hand is very stiff. I don't know what I'll do I need my hands to work. I have no PTO of FMLA left on my job. Oh boy, what an intresting life
 
I seem to have that stiff feeling on my right calf, but I'm not certain if that is a symptom of ALS. By the way, I notice you listen to Bocelli. I have his sacred songs album, and replay constantly the Ave Marias and Panis Angelicus on that album.
 
Andrea Bocelli is actually managed by my cousin's husband, who lives in Jersey. Their house is a shrine to him. I've seen him in concert: awesome! Anyway, just thought I'd add that.

VMD: does that "stiff" feeling in your calf come and go or is it always there? Is it just in your calf or do you feel it elsewhere?

P.S. Make sure you PM me again, happy.
 
Wright:

Since you have connections, I'm assuming that you have Andrea's autograph? :)

The stiffness seems to come and go...it is more noticeable later in the day when I have used my legs for longer periods of time. I don't know if stiffness describes the feeling well. It feels like a type of paresthesia (a sensation of numbness). Since that right calf has been continually fasciculating for about 9 months, I fear something denegerative is occurring. My left calf has been fasciculating for about 6 months, but I do not seem to have that same sensation on that leg (yet).
 
Sorry VMD, I've never been an "autograph" type of guy. I'm sure that if I wanted one, though I could get it and I would be more than willing to part ways with it for the right price. :-D

VMD: so you don't think that stiffness is a spasm or spasticity? Are you still lifting weights? Could it be an injury?

Happy's thread has led me to a question: she had a loss of strength and stiffness in her fingers in the middle of the night but then she stated to me that she regained the strength and mobility in her fingers.
If someone did have ALS (and I certainly don't think Happy does), I'm going to assume that the loss of strength and stiffness would not "go away" Is that fair to say? I'm still learning.
 
Wright, I suppose one must always be on the lookout for a business opportunity! ;)

What I experience appears to be a combination of stiffness, sensory, coordination, and subjective weakness issues with that right leg (and foot). I am still lifting weights, but I do not exercise my legs, only the upper body.
 
VMD

So those type of symptoms are relegated to that one leg. Do the symptoms wax and wane or are they there 24/7? Again, I ask because there could be an injury or something that has to do with transient compression of a nerve due (sciatic for example). How much does it limit your mobility?
 
VMD

So those type of symptoms are relegated to that one leg? Do the symptoms wax and wane or are they there 24/7? Again, I ask because there could be an injury or something that has to do with transient compression of a nerve due (sciatic for example). How much does it limit your mobility?
 
Wright,
I know I and many others are curious, what got you interested in researching MND/ALS?
Did you have a friend with the disease?
Do you have a medical background?
Tell us more about yourself it it is not too personal a question?
Do you have any symptoms yourself?

Just trying to get to know you better and understand your interest. I wish more people were interested in this disease, then maybe we could get it before the public, get the necessary funding for research, and find a cure. We all want that as an end result.
 
My Pleasure Captain Al

Wow Captain Al, someone just asked me that exact same question two days ago. What I have done is copied my reply to her and pasted it here for you.

Here it is:

My interest in ALS, you ask:

I've always had an "interest" in the disease, but that interest grew exponentially when I thought I actually had it. I knew enough about ALS to scare the crap out of myself but not enough about it to relieve my fears. I made the mistake of self-diagnosing myself and was then fortunate enough to find this wonderful forum. I came here as scared as the next person and found so much patience and support as I presented my symptoms and concerns. I subsequently saw three different neuros, have had two EMG's (the latest one was very thorough) and have been told with 99.9% certainty I don't have ALS. It's that 0.1% that wreaks havoc with my mind from time to time. I have yet to see improvement in my condition, but I have been told I need to be patient, a virtue I unfortunately do not have.
I have made many friends on here and I simply do not want to leave. I stood in their shoes for a very short time when I thought I had ALS and it was quite frightening. I had the fortune of being able to step out of those shoes, which is unfortunately a luxury they do not have. The people on here amaze me with their courage and their outlook on life. It's ashame not everyone in the world is more like them, because the world would certainly be a better place. They are here helping people . . . people they don't know . . . at a very difficult time in their life. That simply humbles me.
I guess I really haven't answered your question yet, have I. I want to learn as much as I possibly can about ALS because I want to give it a voice. I want to call attention to it and I want to be armed with as much knowledge as I do it. So I have learned from the many people on here and have done an immense amount of research and I will continue to do so. I want to make a difference and fortunately I am in a position to do so. I not only owe it to these amazing people but I almost feel obligated.

That was the end of my reply to her.

You also ask if I have a medical background: I have a Master's degree in Physiology and a Ph.D. in Biomedical Sciences. I was a neuroscientist for nearly 10 years and now I am a professor at a University teaching in the nursing and medical schools. Not exactly a medical background but darn close.
 
That is good to know Wright. I hope your symptoms do not return and that you continue to spread the news about ALS/MND to many in your classes. We need more people taught about this mysterious disease. It just amazes me the amount of people who when they see me in public ask what is wrong and when I tell them they are amazed. They have never heard of the disease before. A very few are familiar because of the popularity of Lou Gehrig, but usually only the older people know about him.

One thing I have learned over my past 2 years on here is that each and every case of ALS/MND is different. Many symptoms are different, time of progression, onset sites, just a SMÖRGÅSBORD of weird stuff, with this disease. Many have no pain, I have extreme pain. I was on hospice because of the pain increase for 45 days. Thankfully now the pain is under control. No one knew what was causing it, how to treat it, etc. Just dope me up and let me sleep. Just plain mysterious. But, then again I am ab-normal.:-D
 
Capt. Al,

I thought I remembered reading a few months ago where they had decided you didn't have ALS. Have you been to another Dr. lately or found out anything different. Please accept my apology if I have the wrong person or have missed your update on this.
 
vmd: I too am having the stiffness in my calves they seem to be getting slightly smaller too. I have had that same stiffness in my neck at about c-6,7 it feels like a big lump in my neck. As far as Anrea Bocelli...listening to him is like a spiritual experience for me. I love him. I missed his concert when he was in LA last year. Forget the autograph, let's get tickets! (how about it, Wright?:mrgreen:)

Capt Al: I too thought I read awhile back that you were misdiagnosised? I hope you did not have to hear that news twice. I am sorry.

Wright: I PM'd you.
 
Jake,
Thanks for asking. There is more information on Thread; Capt. AL No longer Dx with ALS? GET A 2ND. OPINION! Post number 25.
Here is the link for you: https://www.alsforums.com/forum/showthread.php?t=4824
I might be good to read the whole thread to get all the info, if you like.

Basically the third opinion, said I definitely have ALS. Since that time it has progress into my upper torso arms, hands, and neck muscles. I'm just a big bowl of quivering jello.

My family Doctor who I have used for years tried to talk me into going to Mayo, but I told him I am too far along now to be chasing rainbows. He put me back on home heath care this week, instead of hospice, which is good.

My fate is in the hands of the master.
 
Jake,
Thanks for asking. There is more information on Thread; Capt. AL No longer Dx with ALS? GET A 2ND. OPINION! Post number 25.
Here is the link for you: https://www.alsforums.com/forum/showthread.php?t=4824
I might be good to read the whole thread to get all the info, if you like.

Basically the third opinion, said I definitely have ALS. Since that time it has progress into my upper torso arms, hands, and neck muscles. I'm just a big bowl of quivering jello.

My family Doctor who I have used for years tried to talk me into going to Mayo, but I told him I am too far along now to be chasing rainbows. He put me back on home heath care this week, instead of hospice, which is good.

My fate is in the hands of the master.
Please visit my webpage for more information about me and my family at:
http://www.myspace.com/als_bigal
 
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