I am preparing to diagnose myself of not having ALS

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I am preparing to diagnose myself of not having ALS

Postby jerry2 on December 13th, 2012, 7:25 am

It was a little better few weeks ago with pain in foot and twitching, now it is worse again (the worst, but not worse since last year this time). It is never ok, it is bad or worse.

Because 2 neuros scared me (with nothing concrete), like I have atrophy in hand and when I asked if it can be from ALS he said it can... The other scared me because of my slow first dorsal hand twitching and said this is not the BFS type twitching. It dissapeared for 3 weeks and not it is back.

But I am SICK AND TIRED of this sh*t. And I am sick of the doctors also. I said NO to EMG if I won't drop down or fall things out of the hand (Idon't loose much treatement by waiting, do I). When I read Tobes story I felt it was the right decision. There is no way I can have some atrophy in hand and the EMG would be clear and I would be suspicious again for who knows what, ALS would not be ruled out.

I am sick of the fact that even after 15 months there is no doctor that can say I don't have it. I see I have to diagnose myself with not having ALS.

I am publically announcing that my battle with this problem continues and I am declaring on 2. january 2013, 15 months after all this sh*it started, not having ALS at this point in time.

I am declaring this diagnoses because of the following reasons:

1. My atrophy looks simmilar than 1 year ago. It may be 5% worse but in ALS it would make my hand already inoperable.
2. I have to much buzzing, pain, tremor, numbness, tingling on top of fasciculations and that is excluding for ALS diagnoses.
3. I do not feel any weakness in any limb and after 15 months I should if the problem would be because of ALS.
4. My symptoms seem to move around and fluctuate to better and worse to be ALS. ALS is a progressive disease. I am bad but I can still walk, talk and hold things although I can not do everything because of pain issues.
5. I have normal CK levels, I have not lost any weight.
6. I had all predispositions of BFS (like anxiety) and previous health problems concerning stomach, bladder, colon and joints. Nothing was ever found to be wrong and I went "to the end in this things" doing the most nasty tests like coloscopy, gastroscopy etc...

If the doctors think I can have ALS I am sorry, but I have to be more knowledgable than that, it is my own body at the end and I think I know how ALS works more that most of the "normal" doctors and neurologists (neuromuscular excluded). They can never say never, but I have to, for my own sanity.

I am declaring a vauve that on 2nd January 2013 I will probobaly have all this si*t, but I will stop being afraid of ALS until at least I get some objective symptom that would even remotely point to that diagnoses (like severe and progressive weakness).

Just wanted to make this public. That will stop the posts from me of the type: "This twitch is suspicious etc.". My problem from the beginning was that I was NOT cleared as being benign in the first place.

Take care and thanks to everybody who has helped me on my journey and make it a little ligher. Because it is dark down there.

And I am writing this not in remission but in relaps. I mean it and I hope I will be able to mentally go through this. It took me more than 700 posts. I hope all the others willbe help to others.
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Re: I am preparing to diagnose myself of not having ALS

Postby Yuliasir on December 13th, 2012, 8:23 am

great thing Jerry!
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Re: I am preparing to diagnose myself of not having ALS

Postby mwagner on December 13th, 2012, 12:05 pm

So proud of you Jerry.

All the reasons you listed, are very strong reasons why you're healthy and are just dealing with benign but weird neurological S&*t as all of us are. Especially the fact that you've gone 15 months with no weakness. I know there are some crazy stories out there of people who went years before they were diagnosed with <you know what> but they are the rare anomalies of an already rare disease that even more rarely affects people your age. You have better chances of being struck by lightning and I'll bet you're not running around being worried about that!

I'm starting to get to the point (thanks to BFS Burger) where I'm realizing that there could be about 1000 causes of why a person twitches, and what brings us to this board is that we read just one cause of twitching, that scares us to pieces, and focus on it. We should realize that the other 999 causes are as valid, if not more valid (since we are healthy otherwise). BFS is a mystery, umbrella disorder. There may be specific causes for what we have, but no doctor or researcher really wants to look at it in such depth, because we are just dealing with benign twitches and nothing that hurts us.

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Re: I am preparing to diagnose myself of not having ALS

Postby mwagner on December 13th, 2012, 12:06 pm

One more thing, Jerry - I wanted to point out that the second neuro you're talking about who was talking about your twitching not being BFS twitching, diagnosed you via a video on the internet, right? I don't think he counts... (honestly).

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Re: I am preparing to diagnose myself of not having ALS

Postby jerry2 on December 13th, 2012, 12:38 pm

mwagner wrote:One more thing, Jerry - I wanted to point out that the second neuro you're talking about who was talking about your twitching not being BFS twitching, diagnosed you via a video on the internet, right? I don't think he counts... (honestly).

Mitra


Yes that is correct. I told him my long story with all the symptoms and sent him a video of the hand that is atrophied in the thenar and interossei and he looked at the video and told me that it helped him a lot and that the slow waving motion twtiching like this is not sugestive of BFS. I asked him, what is it suggestive of, entrapement, ALS, and he told yes to both. I don't believe I have entrapament so I fell into a pit again. With hope I asked him if this can be myokymia not twitching, because I can also provoke it with strengthening and releasing the muscle any time and he told me it is not myokymia for sure. The video is quite clear I posted it here also. I believe he could see it better than if I showed it to him. I don't even want to think about this thing any more. I have them now for 2 months there from time to time (some days are bad) and I can provoke them and I don't see a difference still.

I have allready managed to lower my anxiety for a month or two and this sh*t seems to have no effect on my anxiety level. I mean anxiety doesn't seem to play a role here. Anyway, I do not think I will ever get better but at least I am not visibly worse than a year ago. I went to some play yesterday and could barely stand because of my foot nerve preassure and heel pain (was better a month ago) and I remembered the same place last year same time it was like that also. It is hard to stand on one place for me, easier to walk. Shoes make my nerve hurt so much and it was better in summer (no shoes) ;-)

I guess I carry on. Thank you for the good wishes. I am even tired of searching what this is. I guess I won't know what makes a man go shaking arms in the morning before wake up and buzzing in arms from one to another and violent hotspots one day and the next day somewhere else (or not)... I hope soon I'll laugh to them. They bother never the less.
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Re: I am preparing to diagnose myself of not having ALS

Postby Ghayes420 on December 13th, 2012, 10:30 pm

Great job Jerry. As one non medical pro to another non medical pro, I approve and concur with your dx.

I am glad you are able to draw a line in the sand and set a date. Please stay in touch and provide reassurance to newbies as you can.

So glad to hear of your progress!!
A very proud fasciculator since 8/14/2011. :)
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Re: I am preparing to diagnose myself of not having ALS

Postby jerry2 on January 4th, 2013, 4:32 am

As I promised, I am now happy I have all this problems without ALS. I am myself officially diagnosing to have fibromylgia. After everysthing I read and studied, this is the most correlating syndrom with my problems.
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Re: I am preparing to diagnose myself of not having ALS

Postby andman on January 4th, 2013, 6:05 am

Happy to hear that you are ALS free, congratulations!
I hope that I'll be also able to draw such a line asap...
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Re: I am preparing to diagnose myself of not having ALS

Postby jerry2 on January 4th, 2013, 6:42 am

I don't know if you understood my post. No doctor had tole me I have or have not ALS, 2 doctors scared me and told me I don't have BFS and I have hand atrophy. After 15 months I have decided to conclude for myself that I don't have that terrible disease. I found out that with one hand a little atrophied (I don't know for how long), but with no fast progression and all my symptoms I took a risk and declared myself to not have ALS. I had to do it for the sake of my mind. And I found out no doctor is ever going to cure me and if I am wrong and have ALS, I don't even want to know until needed, so I thought it is better to stay away from them in my case at least.

I hope to be able to stick to that thought as my problems continue without mercy.
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Re: I am preparing to diagnose myself of not having ALS

Postby andman on January 4th, 2013, 7:07 am

Yes, I understood your post very well. I understood also, that the key to recovery is to believe/declare that we are ALS free.
And you made this step...

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Re: I am preparing to diagnose myself of not having ALS

Postby chrissi on January 4th, 2013, 7:09 am

So proud of you Jerry!!! *hugs*
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: I am preparing to diagnose myself of not having ALS

Postby jerry2 on January 4th, 2013, 8:45 am

Thanx. I struggle with this every day. I have to read my A4 paper 50 times a day, every time I want to photo my hand if it is still the same "atrophy"... I know you understand this, because even cleared by a doctor and EMG it is hard to let it go...

I don't know how will turn out, at the moment I am quite ok mentlly. I even laugh now when I get new twitch location like yesterday on the back neck (I only wish I won't get in tongue, I won't laugh then, I know it is nothing special, but minority of people seems to have it and really sick people mostly have it so...).

I try to imagine there is a dwrf in my head who want's to scare me and is pressing all those buttons like: Twitch biceps, twitch triceps, twitch thumb, buzz foot, pain index joint etc... And now he is really *beep* off. Few months and years ago he pressed the "stomach pain" button and he got what he wanted - a scared man for months. Now he is pressing everything left and right and I am still almost laughing. Not laughing how good I feel but how this syndrom or whatever is playing with me.

To be honest, I am not the worst at the moment, only the 15 month long foot twitch that is permanent, but no others like moving thumb 24/7 or hip or biceps twitching tht are 24/7. But I had some hotspots a week ago and I managed to let it go. It is like something is poisioning my body and my body is recovering but I get new and new poision every day... I know my wife isn't trying to poision me, we love each other ;-) So must be something else ;-))))

But I find life more precious every day. If I am really bad I just imagine how person with ALS feels and how he would swap with me any time... and I feel lucky.

I just see listening to doctors when they obviously have no clue what is wrong with me, is a double sword edge and just fuels anxiety. WHen things are not clear and not in their texbooks things get really wierd I see... At the end nobody seems to research what is wrong with me (or you for that matter), they just want to see if I have ALS/MS etc. and if not - you are ok, go away. But even with detection things seem to be not 100%, take poor Tobes story for example. That day I decided not to take EMG for my own sake. My atrophy from whoknows when could show something and I have enough of this dark pit. And as you know, it is really dark down there!!!

Take care everybody.
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Re: I am preparing to diagnose myself of not having ALS

Postby seventhcandle on January 7th, 2013, 3:27 am

jerry2 wrote:Thanx. I struggle with this every day. I have to read my A4 paper 50 times a day, every time I want to photo my hand if it is still the same "atrophy"... I know you understand this, because even cleared by a doctor and EMG it is hard to let it go...

I don't know how will turn out, at the moment I am quite ok mentlly. I even laugh now when I get new twitch location like yesterday on the back neck (I only wish I won't get in tongue, I won't laugh then, I know it is nothing special, but minority of people seems to have it and really sick people mostly have it so...).

I try to imagine there is a dwrf in my head who want's to scare me and is pressing all those buttons like: Twitch biceps, twitch triceps, twitch thumb, buzz foot, pain index joint etc... And now he is really *beep* off. Few months and years ago he pressed the "stomach pain" button and he got what he wanted - a scared man for months. Now he is pressing everything left and right and I am still almost laughing. Not laughing how good I feel but how this syndrom or whatever is playing with me.

To be honest, I am not the worst at the moment, only the 15 month long foot twitch that is permanent, but no others like moving thumb 24/7 or hip or biceps twitching tht are 24/7. But I had some hotspots a week ago and I managed to let it go. It is like something is poisioning my body and my body is recovering but I get new and new poision every day... I know my wife isn't trying to poision me, we love each other ;-) So must be something else ;-))))

But I find life more precious every day. If I am really bad I just imagine how person with ALS feels and how he would swap with me any time... and I feel lucky.

I just see listening to doctors when they obviously have no clue what is wrong with me, is a double sword edge and just fuels anxiety. WHen things are not clear and not in their texbooks things get really wierd I see... At the end nobody seems to research what is wrong with me (or you for that matter), they just want to see if I have ALS/MS etc. and if not - you are ok, go away. But even with detection things seem to be not 100%, take poor Tobes story for example. That day I decided not to take EMG for my own sake. My atrophy from whoknows when could show something and I have enough of this dark pit. And as you know, it is really dark down there!!!

Take care everybody.


Jerry, I am so proud of you here. You have come a long, long way from when I first started seeing your posts nearly half a year ago. I hope you can find the strength to keep up this positive attitude and know that you will be an inspiration to many people on here with your newfound perspective. Thank you for sharing this news with us.
Been on the BFS journey since 6/26/12...

Twitch way do I go from here?

BFS does get better with time. Almost two years in and able to do almost everything I could do before I had this condition. Still twitching away of course...
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