Raindog

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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

First, best wishes sent your way Raindog.

TwitchyDoc wrote:
On the other hand, I have known only a few patients with "BFS" turning into MND after 5+ years


How was it proven, that "bfs" turned into MND after 5+years? Has there been any medical journal published research that proves the progression of bfs to mnd? I haven't spent any time over the past 5-6 years researching bfs/mnd so if there is documented proof out there, i probably missed it. Minus such proof, I'll go back to the old truth that we knew around here, bfs doesn't lessen your chances of someday developing als/mnd but it doesn't increase it either. In other words, some people with bfs will go on to have als, at the exact same rate as the general population with no proven correlation to bfs.

take care,
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Re: Raindog

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

garym wrote:First, best wishes sent your way Raindog.

TwitchyDoc wrote:
On the other hand, I have known only a few patients with "BFS" turning into MND after 5+ years


How was it proven, that "bfs" turned into MND after 5+years? Has there been any medical journal published research that proves the progression of bfs to mnd? I haven't spent any time over the past 5-6 years researching bfs/mnd so if there is documented proof out there, i probably missed it. Minus such proof, I'll go back to the old truth that we knew around here, bfs doesn't lessen your chances of someday developing als/mnd but it doesn't increase it either. In other words, some people with bfs will go on to have als, at the exact same rate as the general population with no proven correlation to bfs.

take care,
gary


Hi Gary,
there are some newer case studies but I was talking about my personal experience. In medicine, the only proof in such cases is the correlation (and as I said, these guys I got to see were not classical BFS cases). You see, if a person has fasciculations confined to a certain muscle group only and this particular muscle group develop weakness later (even a decade later), then dismissing it as coincidence would be plain stupid, unscientific. This is consistent with all the older reports of patients with fasciculations who later developed MND of some sort - most have persistent fasciculations localized only in certain muscle groups, typically in arms.

There is no point in discussing that here, even though this forum is dead unfortunately, but I will repeat: typical BFS cases have with fasciculations either in calves or generalized, this is different from these cases.
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Re: Raindog

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

TwitchyDoc wrote:
You see, if a person has fasciculations confined to a certain muscle group only and this particular muscle group develop weakness later (even a decade later), then dismissing it as coincidence would be plain stupid, unscientific. This is consistent with all the older reports of patients with fasciculations who later developed MND of some sort - most have persistent fasciculations localized only in certain muscle groups, typically in arms.


Hi Docen,

I think the key in all of this is whether there is documented, journal published, proof that a person was dx'd with bfs that directly progressed to mnd after years of fascics. As you stated in your post their condition was different than bfs, so that is what distinguishes those folks from us with BFS. And contrary to your claim that it would be stupid and unscientific to dismiss something as coincidental that happened after years of fascics I believe actually just the opposite is true. Drawing a conclusion based off anything other than scientific examination/study is just plain stupid. There is a very large sample size of folks suffering from benign fascics and the lack of correlation between our condition and mnd is well established (again unless I've missed some new studies showing otherwise). Doesn't mean any of us won't develop als just as some folks with chronic headaches go on to get brain tumors.

Finally, while this site no longer accepts new members it is still used a valuable resource for folks like you and me that at one point struggled with a dx of bfs. We owe it to newly dx'd folks to continue to protect this site.

take care,
gary
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Re: Raindog

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

garym wrote:
TwitchyDoc wrote:
You see, if a person has fasciculations confined to a certain muscle group only and this particular muscle group develop weakness later (even a decade later), then dismissing it as coincidence would be plain stupid, unscientific. This is consistent with all the older reports of patients with fasciculations who later developed MND of some sort - most have persistent fasciculations localized only in certain muscle groups, typically in arms.


Hi Docen,

I think the key in all of this is whether there is documented, journal published, proof that a person was dx'd with bfs that directly progressed to mnd after years of fascics. As you stated in your post their condition was different than bfs, so that is what distinguishes those folks from us with BFS. And contrary to your claim that it would be stupid and unscientific to dismiss something as coincidental that happened after years of fascics I believe actually just the opposite is true. Drawing a conclusion based off anything other than scientific examination/study is just plain stupid. There is a very large sample size of folks suffering from benign fascics and the lack of correlation between our condition and mnd is well established (again unless I've missed some new studies showing otherwise). Doesn't mean any of us won't develop als just as some folks with chronic headaches go on to get brain tumors.

Finally, while this site no longer accepts new members it is still used a valuable resource for folks like you and me that at one point struggled with a dx of bfs. We owe it to newly dx'd folks to continue to protect this site.

take care,
gary


Unfortunately, this is not the case, we researches are quite well trained in terms of probability, causation and patterns, this is statistics and science ;) Given the ALS incidence, the number of muscle groups it can start in and rarity of persistent fasciculations among healthy population (less than 2 % report them daily, excluding the calf muscles), the chance for such events to be unrelated is lower than 1 in 260 000 000. Raise it to the power of two to get a chance of finding two people like that.
That is why no researchers / physicians publishing these studies and reports ever doubt the correlation - it is clearly there. If persistent fasciculations were as common as headaches, then surely it would be quite a different story.

I am not sure why we are discussing this - all BFSers know these cases sometimes happen (the unforunate 4-6% as documented in the literature and papers), even on this site there were at least two (confirmed) unfortunate cases who came here but end up diagnosed with ALS.

Still, consider that your life time risk for cancer is about 47% at the age of 62...then worrying about exceptional cases (which happen in anything) seems pointless, doesn't it?

Take care!
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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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