Help with Twitching and Advice

Highlights Only
Veryworried,however was the background (and you are probably the only or one of the few of the people who read patrick's report till the page 17 :)), reality is that people VERY RARELY develop ALS starting with twitches, and if they cramp before, it is rather a seizures, tonic ones, long lasting, hard to release, leading to contracture, not ours (which are very light as per prf. Carvahlo questionnaire,for example, which I had filled, that is why i know the difference).Moreover, there are literally single cases documented when person had over 4-6 month between othervise not explainable twitches and typical onset of ALS with paresis, paralysis, etc.for your own sake, please try not to get in panic mode. BFS is not a clean bill to never have ALS, but in BFS twitches occur most probably (I say most probably becasue it is mostly deducted by physicians by exclusion of other causes) very locally at the levevl of damaged myocite cells membranes (in the muscles, not in the neuron units), while in ALS they are result of neuronal damage in central and spine brain. We, being tested by many means and many times, DO NOT DEMONSTRATE, even at long time BFS, that unique comnined damage - our spinal anterior horns are intact, or brain motor zones are intact, yes we can develop ALS as anybody on this planet but BFS does not seem to facilitate that development.
 
I figured if he went to that much trouble to do all that work then I should read it Can you summarize what dr Epstein and cavillo said? I read it but it is confusing Why has me even more worried is that I had those two times when I was sleeping or somewhat asleep and I tried to roll over in bed and for a few seconds I felt like I couldn't That was a few months ago and it also happened last year twice I think That had me worried that maybe that is a bad sign and now I'm twitching With the start of als would I be able to not move for a few seconds and then move again normally for months after that Confusing?? Thanks
 
Prof Carvahlo and Dr. Epstein both explained us again that 1) causes started with twitching only are rare 2) no clinical weaknes - no ALS, that is practically all :) People in ALS may twitch in still seemingly healthy muscles which is an indication of soon paralysis in those muscles but it is only valid for people already deep in progression.as I explained you somwhere before, issues when someone can not move for a time being awakened from the sleep is called sleep paralysis and practically means you have slight sleep disorder rather than something else. Sleep paralysis is a NECESSARY part of sleeping process (deep sleep phase), and you can for exemple easily see that on your dog or cat sleeping (sometimes even with the open eyes) - being really as ragdoll. This is sleep paralysis. When you have an episode of sleep phases disfunction, your conscious part is awakened before sleep paralysis is released, so you can witness who the brain switches on mototric zones.having such issue twice per year means really even not a regular disorder of sleep but just an episode, which happens to everybody.
 
this sleep paralysis is known in old historic times as the hag,i have had it a few times in my life and its pretty scary,as yuliasir explains it very clearly[like a weight on your chest ] some people feel an evil presence in the room, you should look it up..it happens to a lot of people.
 
I like the analogy to the pet sleeping. Almost all of us have seen the pet seeming to sleep with eyes open. Proabaly wide awake as their eyes will sometimes follow you but the body does not move a fiber. Then, suddenly all muscles are able to move. Not something associated at all with als as far as I know. If it was, you would not be able to move again to get up and walk to the computer and write a question about it. pals only have that total body paralysis in bed shortly before death and you seem to be far, far from it. Hooray!
 
Has anyone done any investigation or has any summaries if and how many people eliminated gluten and has it helped? Also how about elevated billirubin which is what I have ? How about anxitey relief... I read a lot about it but don't see many posts about people saying it has resolved their bfs or issues I also don't see a lot of people that have cured their bfs...has anyone been successful? Forgot to mention that I feel like I'm having more dreams these days than before my bfs not sure if the two are connected but that's what I feel
 
well, I am a good example of what antianxiety treatment does (both medication and speaking therapy), as well as Johnnythejet, SuzyQ, Chrissi, and numerous other fellows (especially read the posts of those who comes once per year to sY HELLO)Emmie, BFS Burger and SAM are those who definitely benefit from gluten exclusion, the also should be much more I name only the most active or those who I rememberif 'cured' means no twitches - well, SuzyQ reports she is virtually twitch free. I anm not free of twitches, moreover, I have all the circus still but I am free of fears so consider myself as cured. And intensity of twitches had really significantly decreased.
 
I have: low positive ANA titer, sometimes elevated bilirubin, reynauds (blue toes when cold), hyper mobility, and I HAD bad twitching with hotspots that would last for months, muscle ratcheting, and foot/calf cramps. I say HAD because I made dietary and lifestyle changes, the main one being eliminating gluten and taking probiotics, and now my bfs is very much improved. I still have occasional random light twitches, particularly in the morning when my bilirubin is high due to an empty stomach. Or, when I'm stressed and not sleeping well, as during the holiday season. But for the most part my symptoms are so much better.When I ingest gluten, I notice within about an hour an increase in my twitching. Eliminating it is not easy, but it's worth a shot and couldn't hurt. I believe there are many causes of BFS, and for me I think it's an autoimmune reaction due to inflammation, so by avoiding inflammatory foods my symptoms decrease. I think that may explain the positive ANA and bilirubin. Quite a few people with lupus and other such diseases advocate anti-inflammatory diets for this reason. Good luck and feel free to message me if you have any q's.
 
Thanks Here's my recap First cpk was 300plus they never really told me a numberThen I took two weeks off and get my CPK again and it came back 100 which is normal. Anything over 300 is abnormal Then I did my CPK two months later and he came back at 170 which is also normal. I think the first time it should abnormal was because i worked out and took the test 3 hrs later I've been twitching since September I would say about 80 to 85% of all of my twitches if not more are in the back of my legs and feet just below my calves this hasn't stopped since September the hasn't even been one day where I haven't twitched and it's pretty much constant. So not sure if this is a hot spot or this is just my BFS. Hundreds and thousands per day When I started twitching in September the doctor sent me to run blood test one of which was Billy Rubin the first time I did this test I got a 38 and then a few weeks later I get it again and I got a 34 anything over 20 is abnormalI went to go see a natural path and he said he could help me with that he gave me a whole bunch of stuff to take I went and did my Billy Rubin test again and now I got 19 and I did my direct Billy Rubin and got a six anything greater than eight for Billy Rubin direct is abnormal I really don't think the naturopath did anything for me. I did get an ultrasound make sure and it's was normal My doctor doesn't think I need to go see a specialist to see if I have Gilbert's or not but I might go All other tests were ok I also did a ANA test and it said Neg <1:80 so I'm assuming that's negative Then I did an extractable nucelear ab which is a more specific test and that was negative What's your billirubin? And did you get tested for Gilbert's My wife and daughter are gluten free maybe I should give it a tryWhat do you think? Also how much do you twitch per day on average Hundreds? Less? More? Do we have many people on this site that have been twitching this much per day non stop for years without a break It's hard for me to accept that twitch every day hundreds and hundred of times per day it " benign" and normal
 
thanks again i'm really trying i had twitching non stop in the back on my legs, now some thighs and a lot in my feet (mostly left foot)...its pretty much on-stop i also am now getting myclonic jerks that move my leg / arm etc...almost everytime i go to bed or try to rest....i used to get them only once in a while now i get them 5-10 times everytime i lay down? any advice on this? also do you think your high billyrubin is connected to your bfs?
 
You know, I'm not sure. Deep down I think the bilirubin and twitching are related to my diet, which was really screwing me up. Look up bilirubin or Gilbert's and gluten, you will see there's a correlation.Stress also plays a huge factor on inflammation and twitching, as does injury. When I tore my calf a few months ago twitching followed, likely due to the swelling. Please enjoy the holiday, and God bless.
 
Can you two please give me your opinion on if I should ask for a MRI of my Brian and head I know some please have had MRIs My Nero didn't say anything but maybe I need one and lot of people here have had MRI Thanks
 
Honestly if it gives you peace of mind I would. Listen to what your doctor recommends. I did to rule out MS and of course it came out clean, and I'm sure yours would too if you decide to get one. However I had other symptoms such as pain and tingling/ numbness, so if you don't have that then your neuro may not think you need one. You likely just have good old run of the mill bfs like the rest if us.
 
I get numbness and tingaly when I bend my arm and especially when I sleep in my arms I also the odd time get like a quick tingly sensation in my head But it's very quick and lasts only a few seconds The odd time I also get very tired and drained like almost like I can't function...light headed etc and the only thing that helps is sleeping it off. Happens like a few times a year Where did you get your numbness and tingly? Also did you guys ever get mychlonic jerks often? I also feel like I've started dreaming all the time now Thanks
 
Really interesting what you just posted, because I too had the same stuff going on a few months ago.When i had bfs the second time around this past spring (I had a bout in 2009 too) I had an increase in weird vivid dreams, I was waking up many times a night with numb hands, and I had night jerks too. The acupuncturist said it had something to do with liver wind in traditional Chinese medicine and also perhaps autoimmune. Like some sort of imbalance. Someone here just recently posted about acupuncture too, and she was an acupuncturist and said exactly what the pressure points were and what to eat. it sounds crazy, but it's just odd that so many if us have such similar experiences and if you have an open mind you might want to try it out along with diet modification. I don't want to offer false hope, because there is no cure-all for bfs, but i will say that it helped me. The good news is that it's all benign, in many cases it's manegable, and you're not alone. Many BFSers here have reported those sort of jerks you get when trying to fall asleep. Maybe that and the dreams have something to do with anxiety and you being in fight or flight mode. If you've brought it up to your neuro and they're unconcerned, then I wouldn't look too much into it.I would also trust your neuro's opinion regarding the MRI. He/she not think one is necessary, and I doubt it is. If you don't trust your doctor, then find one that you do trust and feel comfortable talking to.
 
When I told my Nero about the jerks they were very infrequent Now they are more pronounced And as mentioned the dreams were infrequent as well Last night when I was sleeping (or think I was) again I tried to adjust my legs into a different position and it took me a few seconds to get them to move. Like I tried then tried again then they finnally moved This totally freaks me out Happened to my whole body a few months ago Yulisar stated this is sleep paralysisTulips at I hope you right
 
One other question Do you know if head parastesia is a bfs symptom I sometimes get tingling sensation in my head that lasts for a few seconds then goes away But can so happen a few times in a row Thanks
 

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