Raindog

[Scboy]

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

[raindog]

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.

[veryworried123]

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