A guy with 18 months of twitching now MND

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twyla I love you

Postby KERRI on August 5th, 2003, 2:33 pm

Twyla wrote:Flash19 wrote:

I'm NOT making this up to scare people. Hey it scared me terribly because I'd not long started twitching when I read that article.

Flash, I didn't mean to suggest that you were "making it up to scare people"....just that you didn't have all the facts.

However the article did mention a lot of other aspects in addition to twitching.

Exactly, and those would make all the difference to people here who are suffering from mostly twitching and don't have the other symptoms he reported early on.....balance and co-ordination problems, and atrophy.

Again, I think it would be wise if all of us refrained from posting stories of "bfs turning into ALS" without having the whole, factual story. Actually it might be a good idea not to post even with all the facts. What's the use when it just scares everyone and it's gotta be very, very, very rare anyway.

Twyla
ps. Flash, I enjo*beep* your "dying sway" story....LOL...you are a talented writer!


Twyla,
Lets not post anymore like the I promise I will not and this time I am keepin my promise.
I wish you were here right now I would kiss ya baby.

And to Grym the bet is still on honey.

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Re: twyla I love you

Postby KERRI on August 5th, 2003, 2:34 pm

KERRI wrote:
Twyla wrote:Flash19 wrote:

I'm NOT making this up to scare people. Hey it scared me terribly because I'd not long started twitching when I read that article.

Flash, I didn't mean to suggest that you were "making it up to scare people"....just that you didn't have all the facts.

However the article did mention a lot of other aspects in addition to twitching.

Exactly, and those would make all the difference to people here who are suffering from mostly twitching and don't have the other symptoms he reported early on.....balance and co-ordination problems, and atrophy.

Again, I think it would be wise if all of us refrained from posting stories of "bfs turning into ALS" without having the whole, factual story. Actually it might be a good idea not to post even with all the facts. What's the use when it just scares everyone and it's gotta be very, very, very rare anyway.

Twyla
ps. Flash, I enjo*beep* your "dying sway" story....LOL...you are a talented writer!


Twyla,
Lets not post anymore like the I promise I will not and this time I am keepin my promise.
I wish you were here right now I would kiss ya baby.

And to Grym the bet is still on honey.

Kerri



P.S. when did this guy see a doctor anyway
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Postby Flash19 on August 5th, 2003, 2:47 pm

Thank you. Maybe I should write a book before my fingers turn into toothpicks ;)

But I do agree there is no point scaring each other / ourselves. I do a good enough job of that on my own.

You were brave going to that *GULP* other place to check the facts.


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Postby Twyla on August 5th, 2003, 9:55 pm

Kerri wrote:

P.S. when did this guy see a doctor anyway


Well, here is the first mention of seeing a doctor in Jarrod Cunningham's story. This was after he quit the rugby team because he knew his performance wasn't up to par, but he had no idea of what was wrong with him. There's no mention of any other symptoms at this point.

"The main thing I had found trouble with when training was that when I opened my hands to catch the ball my thumb on my right hand was not extending fully and this was why I was dropping the ball. "I talked to a couple of Physiotherapists about this and was told it could be a trapped nerve somewhere so I was referred to an Orthopaedic surgeon." This would be a decision that would change the lives of Jarrod & Carrie and their families forever. "Carrie and I went along with still no idea what the root of the problem was and we both hoped to be given a simple solution by the specialist."
The doctor performed a physical examination and asked if Jarrod had noticed the muscle wastage in his right thumb and along the outside edge of the palm. The doctor pointed to it and it was then that Jarrod realised that things may be worse than they seemed.
"When I looked closely I could hardly believe the difference I could see between my two hands. The doctor also noticed muscle fasciculation's in my deltoid muscles."

This story was written by Damon Harvey, a close friend of Jarrod and Carrie's. Damon has known JC for over ten years, firstly as a friend, then as commentator of his rugby career and now as a "positive" supporter of Jarrod and other PALS.

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back from the crapper

Postby Flash19 on August 6th, 2003, 6:47 am

Gee thanks Twyla,

Guess what I just spend the last hour doing? That's right checking out my hands, thumbs and palms in particular. Of course I'm convinced that the right one is smaller than the left, although it depends what angle I view them from. Also since I'm mostly right handed that doesn't make sense as it should be bigger. Also this is the hand that faltrered with the screwdriver on Saturday.

Although my sensible head tells me that my body is not and never will be symmetrical, the part of my brain that controls my bowels thinks differently.

I'm now unfairly holding you responsible for me checking my freakin hands several times a day for at least the next 6 months, and probably longer.

Just as I was feeling bettter:(

I knew I shouldn't have gotten sucked into reading that.

Now where did I put those grip strengthener thingies?


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Postby Pole on August 6th, 2003, 7:01 am

I watch my palms very carefully too :shock:
For at least 2 months I think. For now they seem to the same (thanks God) but sometimes I'm not sure. I learned that all depends from the light (from which side the light is).

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Postby Twyla on August 6th, 2003, 9:56 am

Flash & Pole,

You two missed the point that atrophy in ALS is very obvious, as Jarrod said.....he was amazed at the difference between his two hands. You guys are looking for subtle differences.....examining your hands in different lights, etc....it sounds like a bad case of anxiety to me.

Relax.....and take heart....one of these days you'll put your ALS fears behind you, as I have, and get on with your life.

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Postby GaBelle on August 6th, 2003, 6:29 pm

Is it my imagination or does Kerri not check back after posting? Sometimes I don't even think she reads the answers for whatever reassurance she might receive.
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No I read all of the postings

Postby KERRI on August 6th, 2003, 6:46 pm

I read all of the postings Gabelle, but then we get posters on here who scare me, and then I question who is right and who is wrong. I know I should try and listen to my docs and I do listen but my body does not feel right but I suppose if I stopped worrying my body will feel better.

I am not a bad person just a very scared one. I have met people on this forum that do help me and when they are hear I usually get better.
I need to stay better that is the hard thing. I was told over in Braintalk maybe it was by you, people normal people that is twitch 12-24 times a day this may be true, but I guess the twitching is not really my problem, my true problem is that I even twitch, if I twitch once a day everyday and stopped twitching for a year I would still remember that I had one symptom of a very horrible disease, and that right there is what keeps me anxious, twitching can mean bad things, it could also mean nothing but the fact that it could mean something is a hypo's nightmare.
The fact that they can never 100 percent rule it out also helps to fuel my anxiety.

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Postby GrymReeper on August 7th, 2003, 7:50 am

well, let's not spiral out of control here. flash, well put...but, does anyone see that, while bfs lore is always mentioned in these stories, it seems to be by US, not the sufferer???? how many accurate stories include someone saying they were dx'd with bfs? we seem to add bfs into the stories on our own.

yes, anyone can ne stricken with als - even bfs folks. the key is there is NO als/bfs correlation. just the opposite. i've said before; people have hit the lottery more than once in a lifetime. having bfs doesn't give you a free pass to never have another neuroligical disease. you have the same odds as the public at large.

the rugby guy, upon further review, had muscle waistng. the als folks i've known in the past never, ever had a good neuro exam. the ones i've KNOWN never had a clean emg. the ones i've known went from 0-60 fast. that is, dx to death in the time many of you have been experiencing your symptoms.

right out of the neuro bible, folks, regarding als/twitching: after 6 months, without progression or discoverable weakness, there is great doubt cast upon als as a possibilty. at one year a dx of als is untenable.

please put that in the bank.

in life, there are exceptions to anything, but this is a pretty damned firm rule. that's why they call them "exceptions". if you choose to live your life believing you are the exception, there is probably no helping you. all the data, and REAL stories in the world won't help you.

please put that in the bank.
Regards,
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