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AboutBFS.com • View topic - Raindog

Raindog

BFS Online Support Group

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Raindog

Postby Scboy on October 26th, 2017, 6:19 pm

Just curious how raindog is doing. Raindog are you out there?
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Re: Raindog

Postby raindog on August 4th, 2019, 4:15 pm

Still alive and cramping as bad as ever. Had the Aorta replaced but had a few issues with pacing post op so on beta blockers for now. What has emerged is that my both my younger brothers started with muscle problems about 2 years ago mainly slow relaxation of muscles in hands as well as jaw type dystonia problem... Anyway they kind of put it off and got on with it until earlier this year. To cut a long story short their first visit to neurologist as seen them both disgnosed with Myotonic Dystrophy type 1 adult onset. So braring in mind im pretty much a lot worse than them and have multi system involvement L vent hypertrohy septum Valve and conduction abnormalities all be it not too bad at the moment.

Anyway after 13 years of insidious progression it looks like i might have a answer. Aparently this is down to my mother being a carrier... she would have got it from her dad.. my grandad. I believe he died from Parkinsons disease but maybe it was Muscular Dystrophy all along. Anyway now i have to get the genetic test done but according to the Muscular Dystrophy UK they say im a cert.

Anyone know a decent solicitor? 5 neuromuscular specialists no muscle biopsies or genetic testing and have mult organ involvement Endocrine Heart lungs Sleep disordered breathing Polyuria and esophagus stomach and bowel problems which i have to hace 2 yearly screening.
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Re: Raindog

Postby veryworried123 on August 20th, 2019, 12:55 am

Good to hear there a few old timers around

I have had a really rough few months
Beside the thousands of twitches per day I’m “feeling” like my legs are heavy and I feel “slower”
Can’t realy describe it. I’m just not feeling good

I’m going on 6 years now

Question: I ran into a Nero the other day (very very qualified) and he basically said listen bfs is an exclusion and it really takes 5 years plus to ensure that it’s not stemming from something more serious which had happened according to him plenty of times. He also said

bfs is just bfs until something else happens and then it’s not anymore

We really don’t know the origin of the twitching but we know something is right - it’s juts that we don’t spend time or resources investigating it

He feels anyone who has widespread long term twitching really didn’t get it via anxiety or stress. Stress doesn’t cause it we know that he stated

There are over 4000 Nero diseases it could be and there is literature to prove it

5 *beep* years! - I think we spoke about this before on here but you would think that a year is enough to know if something really serious was happening

Thanks
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Re: Raindog

Postby TwitchyDoc on August 23rd, 2019, 4:28 am

Raindow, I am sorry to hear that...lets see what the results will say.

veryworried123: What your neuro told you (at least 5 years of monitoring) is what I mentioend here several years ago, and immediately I was called names, attacked, ridiculed...and I get it, people used to come here to get reassurance, regardless of whether it is true or not, and they get aggresive if you contradict them. It is like arguing with people who believe in God or anything supernatual, they cling to belief, despite the facts, because it offers consolation.

On the other hand, I have known only a few patients with "BFS" turning into MND after 5+ years and in most cases, it was different from the typical BFS here. The last patient I spoke to had intermittent fasciculations in his left arm since 1997, nowhere else. They waxed and waned for years, EMG was clear. Later, he started getting fasciculations on his left side. Around 2005, his left arm (where the fasciculations appeard initiatelly), started to weaken and then it was a classical progression of MND.
He had no widespread twitching, no sensory stuff, nothing. You can see it is different from BFS as we know it. But as this happens from time to time, neurologists are now advised to follow up on these patients and they do not really distinguish between the pattern of fasciculations.

I know many more BFS sufferers who are OK after more than a decade. Myself, more than 12 years, tongue fasciculations included.

As for the literature, that is only half-true - it is not uncommon to encounter a condition that is still unknown, we call it syndromes, and some might be phenotype specific and will thus never be described.
Also the stress/anxiety relation is not that clear - there are studies confirming that (you can check PubMed yourself, at least the abstracts), yet the mechanism is not known.
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Re: Raindog

Postby garym on September 6th, 2019, 11:02 pm

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Re: Raindog

Postby TwitchyDoc on September 7th, 2019, 8:44 am

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Re: Raindog

Postby garym on September 8th, 2019, 8:54 pm

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Re: Raindog

Postby TwitchyDoc on September 9th, 2019, 3:52 am

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Re: Raindog

Postby garym on September 9th, 2019, 9:00 am

Can you please point me to the published study that demonstrates that 4-5% of people with absolutely normal emg's except fascics go on to develop mnd. I sincerely would like to read it and will make it a sticky at the top of one of the pages here on the site. People deserve the truth about our condition and I will absolutely not hide it.

take care,
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Re: Raindog

Postby raindog on November 3rd, 2019, 7:41 pm

Thanks for the kind words. I would like to point out that ive never really worried about MND as I have never had actual or percieved weakness. I would also encourage ALL newcomers to BFS to focus on the fact that the odds are massively stacked in your favour. FWIW ive never had a normal emg but MND was ruled out from the outset.. which i am obviousy grateful for. However i do feel aggrieved that if I do have Myotonic Dystrophy it was unfortunately overlooked by at least 5 Neurologists and if so maybe better surveillance and treatment options could have been instigated much earlier.
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Re: Raindog

Postby fox2run on November 19th, 2019, 5:19 am

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Re: Raindog

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