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A guy with 18 months of twitching now MND

PostPosted: July 27th, 2003, 6:23 pm
by KERRI
Yet another person with long term twitches and no weakness goes on to get A-- I hate this crap, I do not know whether he had emgs.
Five more months and I will be at 18.

Kerri

This waiting game is BS

Re: A guy with 18 months of twitching now MND

PostPosted: July 27th, 2003, 6:55 pm
by KERRI
KERRI wrote:Yet another person with long term twitches and no weakness goes on to get A-- I hate this crap, I do not know whether he had emgs.
Five more months and I will be at 18.

Kerri

This waiting game is BS


I was brousing the old als forum posts, and there were some people on there who said they twitched for 3-5 years before they were diagnosed.

Are they for real.

Kerri

PostPosted: July 27th, 2003, 11:58 pm
by SusanSid
Kerri,

I read your post with interest. I used to be a regular on this board, but haven't been active due to school and just needing a break. I have had BFS for over 20 months and have had about every symptom mentioned on this board. I have BFS nothing else.

I too had the fear of ALS. I am responding becausing I am concerned that making a flat statement about someone, (who?), has had been diagnosed with ALS (what is the history etc), with no weakness after 18 months of twitiching (where was this information found?), only instills fear in people, especially the new people.

I am well read on this subject, but don't claim to be an expert, but I would bet there are facts about this person that are important that are not mentioned. Just because you have a headache doesn't make you have a brain tumor.

I feel for anyone who has with ALS, it would be horrible, but the fact remains the chances of actually having ALS is incredibly small. We can focus on the positive facts or we can look at the "what if's". The what if's can make one crazy with fear. I prefer to look at the medical facts and statistics...they are very resassuring.

Just an opinion :-)
Sue

PostPosted: July 28th, 2003, 1:02 am
by tlotoxl
Kerri -- you reall have to disconnect yourself from the web, or at least from aboutbfs/braintalk.

You have fewer than 10 twitches a day for heaven's sake! There's nothing for you to worry about, and meanwhile almost every single post you make sounds hysterical with fear -- fear that isn't particularly healthy for you or the other people on here who have considerably more twitches and haven't had the benefit 4 EMGs, an MRI, a spinal tap and whatever else you've had.

PostPosted: July 28th, 2003, 2:39 am
by Pole
Kerri,
what about your meeting with a psychiatrist? Have you made an appointment????????

regards
Marcin

PostPosted: July 28th, 2003, 2:39 am
by dwl
I agree with the 2 previous posts. Kerri, you don't seem to pay the slightest attention to any of the replies to your many, many posts. Everyone else at least takes on board what the replies say - for a good example, look at Uber's panicky first few posts and compare them to the very sensible stuff he posts now. You just seem to be going round in circles. Maybe you could reflect on this a bit and consider getting some professional help - it ain't very healthy.

David

PostPosted: July 28th, 2003, 5:48 am
by jcavan4125
Well said dwl.
The anecdotal horror stories serve no purpose other than to generate fear!
Kerri, you really need help. You keep searching for that magic test that is going to relieve you of all your fears and that test doesn't exist. The problem is not whether you have ALS or not (which you don't), the problem is your anxiety disorder. You only serve to feed your fear by searching the internet to find the exceptions to the rule which only hurts you. Bringing it back to this board though hurts alot of other people who are also scared and anxious. They come here for comfort and education not fear and speculation! You really have to get a grip on yourself! I'm not trying to put you down, I'm just saying what alot of other people have already told you... you need help.

PostPosted: July 28th, 2003, 10:03 am
by DogBone
Kerri --

Hang in there -- you will make it through. Kerri - I have a hunch that if you do not stay away from these sites you will lose more than the dream job you have already lost. See how you feel after 1 month away from these sites. I got very busy and did not come to the site for a couple months and I felt better than ever. Do not risking losing the things you love most about life for your obsessions on these websites.

I know it is hard, but you should call you ISP and disconnect. Just pick up the phone and walk away from the internet for a while.

DogBone

PostPosted: July 28th, 2003, 10:18 am
by Jenn311
Kerri,

I agree with the others. Get help!!! No one wants to see you doing this to yourself. Disconnect from the internet and believe what your doctors have told you.
GOod Luck,
Jen

PostPosted: July 28th, 2003, 8:16 pm
by Davidd
Kerri-

Life really is a mystery...some days are good, some days are not so good, and some days are just sort of neutral. One thing that is really important to do is to try to relax during those tense moments. As you know from the many posts here and on other sites, twitching is not a precursor for ALS. Is it true that people who twitch could develop ALS? Of course. Is it true that people who don't twitch could develop ALS? Of course. Are you more likely to develop ALS because you are twitching? Not as far as I have ever heard or read.

I do understand how you feel...the twitches really can play mind games with you and everyone else. The trick is to out-smart them and tell yourself that you are ok...that it is not the end and that good days lie ahead. Time is generally a healer and the further out you go in time the better you will generally feel. Sometimes a little help is necessary and that is fine..in fact, having someone work you through your feelings is a great idea. I did it, as did others hear.

One other thing...You know Christopher Reeve? Former Superman who had that terrible horse-back riding accident? I think you are aware of his current condition. Think about your situation like this. Think about the worst day that you have had with your symptoms...the worst day....maybe today, maybe yesterday or maybe a month ago. Now imagine asking christopher reeve if he would trade any day of his current life for your worst day...what do you think he would say? My point is that for the rest of his life, his best day will never even come close to your worst day. Each of our live's is really a blessing.

--David

My thoughts

PostPosted: August 5th, 2003, 10:17 am
by Flash19
BFS is widespread - probably more so that we realise.

I do not think that BFS are any more related that hayfever and a cold.

It do think it is possible for 2 things to happen:

First off someone with BFS might independantly develop ALS is just the same way that someone without BFS would. It is unlikely that BFS prevents ALS, so sooner or later some poor person will develop ALS, albeit not related in anyway to their BFS. The first thing that person will say is "I twitched for X years before my muscles started wasting".

Also I think it is entirely conceivable that someone in the initial stages of ALS might develop BFS symtoms independantly, probably because they are worried about other changes in their body. This might explain why some ALS victims report widespread violent twitching not normally characterisitc of their disease. We all know what it means to twitch with worry.

Once of the things that really increased my twitching was reading about an ex-England rugby player who developed ALS (I read this the same week I started twitching). He reported mainly BFS symtoms. I now believe that he aquired BFS the same way as we all do - from fear of ALS, only in his case he actually had ALS. Incidentally that became apparent very quickly, and within a year he was obviously suffering from ALS, and in his own words barely had the strength to open a bag of crisps.

So while I don't believe BFS begats ALS, I think ALS may well bring about BFS in those poor people.


Flash

PostPosted: August 5th, 2003, 10:25 am
by Jenn311
Great Post Flash...I agree.
Jen

Re: My thoughts

PostPosted: August 5th, 2003, 11:21 am
by Twyla
[quote="Flash19"]
Once of the things that really increased my twitching was reading about an ex-England rugby player who developed ALS (I read this the same week I started twitching). He reported mainly BFS symtoms.

When I read this I wondered if it was the real truth. So I researched the story of this English rugby player, who name I found is Jarrod Cunningham, and came across the following lenthy article on the SALSA site. It's the "Jarrod Cunningham Story" and here is a quote from it, regarding his first symptoms-

"The session proved to be very frustrating. Jarrod knew his match fitness would come back in a few weeks, but something else was bothering him. His field vision, balance and co-ordination seemed to be out of kilter. This was confusing to him as he had always taken these functions for granted, but now they seemed to have deserted him. Something just did not seem right, he could not pin-point what it was."

These were his first symptoms. Nowhere did I read that he complained of BFS symptoms.

Later the article states that a doctor noticed atrophy in his hands, and only after some time was twitching noticed by his doctors.

Nowhere does it say that Jarrod himself complained of twitching.


Please, please, be sure of your facts before posting scary stuff like this on the forum.


Twyla

No hang on a minute...

PostPosted: August 5th, 2003, 12:50 pm
by Flash19
I read an article in the UK Daily Express about 2.5 years ago. The article was by the player himself, and it is probably the same person that you are referring to.

Twitching factored a lot in the article, and this was occuring before he was diagnosed with ALS, and before he noticed serious weakness problems.

I realise that I am going by memory, but the article scared me so much it is virtually burned into my brain. I sat there reading it over and over again.

He mentioned lying in bed unable to sleep for his twitching body. At one point he mentioned his arms shaking a lot (and this was is the relativrly early stages). He also mentioned that the only thing that seemed to stop the twitching was getting drunk.

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.

However the article did mention a lot of other aspects in addition to twitching. It was an entire tabloid sized page with one photo of his face in the centre.

So I stand by what I've semi-quoted. Sorry if it's scared anyone.


Flash

PostPosted: August 5th, 2003, 2:27 pm
by Twyla
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 enjoyed your "dying sway" story....LOL...you are a talented writer!