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May 29, 2006

I had posted my story before under different titles but the whole situation makes me still afraid. Maybe some of you could give me some additional advice or help as I am almost down with my nerves.

Current situation: Ongoing bodywide twitching, constant sligtly increased cpk, feeling always tired, constant stiff/crampy/tight/metallic feeling of my legs/feet+feeling when walking as if I am wearing huge gloves, no charlie horses so far.

Everything has got worse when doing body exercise twice last week, I am now performing only 30 minute-walking and -biking which helps for the stiffness.

Within the last 1,5 years being into symptoms with a break of around 6 months till April this year I had a lot of different EMGs at different specialised clinics covering any limb, the last 4 weeks ago (left calf which feels stiff+upper arm)+evoked potentials (why that?) everything within normal limits so far+clean clinical exams!

Due to my clinical development so far for over 1,5 years every specialist states that it becomes more and more very unlikely to suffer from ALS/MND but they cannot rule it out totally and I had to come back within a 6 months period if crampy felings would be ongoing.

Ongoing even worse symptoms - despite that no negative results, how could this be? Is this normal, because if you would have longlasting symptoms you must have other results?

How should I behave, please I need some kind support, please be honest!

And now Christmas time is coming........:|

Thank you Dear All,

Good Morning Matt. I am sure some of the others on this board with more experience will have some helpful thoughts but I didn't want to ignore your request. I haven't been waiting for a DX as long as you but I certainly sympathize. I don't know why it takes so long for definative results to show up on the clinical tests, but what I am doing is preparing for the worst and hoping for the best. Plus I try to enjoy my time with friends and family while I can. I think of it this way, if I never get any sicker than I am right now, at least all my affairs will be in order and I will have had some great times with my family and friends, PLUS be able to continue having great times. Hope this helps in some way. Here's hoping you get some answers soon!
Hi Cindy,

the worst thing is that everybody is trying to convince me that it is all in my head and that I should not take care of some uncomfortable things going on throughout my body! They state that docs had ruled out almost MND and can not follow up that ist is not so easy to rule it out definetely additionally when symptoms are ongoing and become more obvious to me (like the weird leg sensations, crampy, stiff+tight). This is driving me mad, it is somehow humiliating not to be taken serious as nobody can see some changing due to my appearance because I can still walk on heels/toes and do not experience tripping etc. so far, is this conclusive after 1,5 yea...? (Hopefully you understand what I mean I am not a native speaker but German)

Thank you for your kind support it is really a help!

Best wishes,

Oh do I know what you mean! People tell me, "You look fine." And when I look at pictures taken of me recently I think, "Gee, you would never know how awful I feel." But looking good and having a healthy body are two different things. And maybe the others can tell us but it does seem like you've waited a long time for answers. It is hard not to get frustrated.

As you know, my experience is similar to yours. We just have to accept the fact that modern medicine can't provide the answer. We've gotten so used to the idea that medicine has an answer for everything that we feel it is owed to us. I suggest you ask the doctors to help you manage the symptoms and do what you have to to get by. Stop worrying and focus on your wife and family to give them the most of yourself--just in case things get worse. I guess that's harder for some to do than others, but if you don't you will drive yourself crazy and introduce even more problems. You've come to the end of the road as far as what you can learn about your condition.

There are people here who have put up with this kind of situation for a very long time.

Que sera sera!

Matt, What you have sounds like Benign Fascultation Syndrome with cramps, esp if your 1 1/2 years into this with no clinical weakness / atrophy, although, there are exceptions. Your negative EMG's, as many as you've had sound good for neg ALS / MND. I'm in the same boat as you, but symptoms getting worse much quicker, but still a negative with all the neuros. Cindy is completely correct, in a nutshell, if this is in fact MND / ALS, there is really nothing you can do, but this is a wakeup call. Get your house in order (get your life insurance, disability, etc etc) now, live every day to the fullest, spend extra time with your family, and in the end, if it's nothing, your alot more prepared than you ever were and you've spent precious moments with your family, that otherwise would have been a missed opportunity never grasped. Hang in there, get you some anxiety / anti depressants to help you cope and live life for today.
Byran- Did you see David's post? I, for one, find it comforting to know that sometimes it does take a long time to get answers. That doesn't mean the answers are not there and it doesn't mean I am imagining all of this. It just is what it is. Go do something nice for yourself today!
Thanks JamieT for the kind words. And now, everybody, I am off to work for a lliving, while I still can. :) Enjoy your day! Cindy
Hi Matt. I would think that with all the doctors you have seen and you are still no worse clinically that you should stop worrying about ALS. Keep it in the back of your mind because things could change but you are letting this rule your life and that is a bad thing to do. You can not change anything. Try to live healthy and be happy. If you have ALS there is nothing that can be done for you except manage symptoms. Get some baclofen or Quinine to try to help the twitches and some Ativan for the anxiety and see if that helps. If it doesn't after a couple of months then try something else. AL.

Matt, I was reading your post when I heard snorting sounds outside my window and I looked out to see a wild pig caught inside a fenced in enclosure around a maple tree we had planted this fall, how it got under the fence that's only 5 inches off the ground I don't know, but after yelling and shining a flashlight at it, it somehow squeezed it's way back out, I couldn't see exactly how, though, because of the darkness. Thought maybe this crazy story[true] might cheer you up. Anyway I take or used to take I should say clonazepam to settle down and to sleep better also helped me much with trembling and shakiness, you might try it. Barry of New Mexico
I hope you live in a rural part of NM Barry. AL.
Hello Dear All!

It is good to have been supported by so many different people which leads to my general improved mood! Regarding symtoms it is crazy, after some biking today my legs feel very heavy/tight/crampy but I have decided not to let these feelings overcome my life!

Thank you very, very much for all encouraging posts! :-D

Have a nice weekend and all the best to you whatever will be e.g. I will spend this with my family on a traditional Christmas Market here in Germany which is a very, very romantic, old fashioned one! Everything smells good and there is a lot of traditional Christmas music played.

Hi Matt. The Christmas Market sounds so pretty. You'll have to take some pictures and post them so we can get an idea, though we'll miss the sounds and smells, of course.

When my children were little I used to make gingerbread houses from an old-fashioned recipe.

Last year, I made one for the next generation, never knowing that it was possibly my last. I don't think we ever even took photos of the kids with these elaborate confections. When the hands give out, some activities must go, and I am trying to decide which I will keep and which I will give up this year.
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