8 years and still have twitching everywhere

[billydog]

Its been about 8 long years and i still am experiencing muscle twitches all over my body. I still havent figured this bfs thing out. I have seen 3 nueros in the past but none of them seem to concerned or offer any type of medicine or relief for this.. im now 36 yrs old with 3 beautiful daughters and i just want this to go away. Ive been on taking. 5 milligram of xanax once a night for about 5 years now. They help me sleep a little better. My question is there any type of treatment out here for this condition. Anything at all?? Please any advice would help!! I twitch everywhere. What could this be related to? Ive had a mri that showed herniated disk in lower back and neck and degenerative disk disease but thats all. Emg normal besides corpural tunnel and guyans cannal in both wrists..

[SecretAgentMan]

First and foremost is addressing anxiety. 8 years in I'm sure you got that figured out. Do you notice your twitching ramp up when you get stressed out? Also, have you ever done anything to actively work to address how you manage and handle stress and anxiety? I found great relief in meditation. I have a post in the general topic section on self-hypnosis for anxiety (which is a good practice for self guiding meditations). You can't keep doing the same things and expect different results, so perhaps try integrating a daily ritual of meditation. There are lots of resources on the internet. I even joined a free meetup group at meetup.com to get together with other more experienced people to show me the ropes.

Second... Its a controversial subject on the forum but myself and several others found relief by changing our diets. If you read my diet experiment post in the general topic forum in one of the threads you can find a link to a blood test I had done to check me for food allergies. I was off the charts for gluten and wheat and I found that when I took it out of my diet I had dramatic improvements. It seems that foods we are sensitive to act as stress to the body just as easily as emotional stress or worry does. I actually had another condition that was causing a rash of food and chemical sensitivities. If you have or had IBS in the past, I'd recommend giving this serious consideration.

Third, I'd recommend alternative medicine over the conventional route. The conventional route always leads to prescription drugs or exclusionary testing (looking to rule things out). Alternative medicine has an entire different philosophy. Rather than try to mask symptoms they look to find the original cause for what is ailing you so that it can be addressed, corrected, and healed naturally. There are a million different styles and branches of alternative medicine, so you'll have to sift through a few different doctors until you find one that you are personally comfortable with. I had great success with Chinese Medicine such as acupuncture/acupressure.

Good luck to you.

[billydog]

Thank you so much for the info. I will definitely be looking into what u had suggested. Its kinda weird but i really do notice my twitches get worse from different things i eat or drink. For example, i just finished a gatorade and now im twitching. And i do twitch everywhere when im under alot of stress. I mean everywhere. Its like my body is producing too much of a stress hormone or something and i really get twitches bad. I know that after 8 long yrs of twitching and having an emg, mri, and blood tests that its not some type of muscle disease. And a doctor tfrom wvu hospital told me it was bfs. Its just so hard for me to pinpoint my root cause. I still workout with free weights and do push ups and pull ups with no problem at all. Besides back pain from having herniated disks in my neck and back.. as i think back when this all started i was under lots of stress from my ex gf and just got over being sick. I woke up one morning and the twitches were there. So im not sure if its from stress, diet, or maybe something spine related..

[aztwitchy]

Thank you so much for the info. I will definitely be looking into what u had suggested. Its kinda weird but i really do notice my twitches get worse from different things i eat or drink. For example, i just finished a gatorade and now im twitching. And i do twitch everywhere when im under alot of stress. I mean everywhere. Its like my body is producing too much of a stress hormone or something and i really get twitches bad. I know that after 8 long yrs of twitching and having an emg, mri, and blood tests that its not some type of muscle disease. And a doctor tfrom wvu hospital told me it was bfs. Its just so hard for me to pinpoint my root cause. I still workout with free weights and do push ups and pull ups with no problem at all. Besides back pain from having herniated disks in my neck and back.. as i think back when this all started i was under lots of stress from my ex gf and just got over being sick. I woke up one morning and the twitches were there. So im not sure if its from stress, diet, or maybe something spine related..

I'm in the same boat. spine issues complicate matters for me also. hard to tell what came first...or what causes what.

[johnnythejet]

Billy-
I feel your pain, and unfortunately the vast majority of long-term twitchers who report back years later have not found anything that works for most. Most have moved on via anxiety reduction and shifting focus from twitches to real life activities. Also, many have reported wasting months/years trying every idea (medication, diet, alternative medicine) and they almost all lead to false hope. Good luck to you and thanks for reporting in.

[billydog]

Ive always been an athlete every since i was a kid. I played football, basketball and baseball. Im now 36 and like i mentioned earlier, have had these twitches for about 8 years. I wonder if anything i did in my younger years has anything to do with the twitching and possibly the degenerative disk disease! So many possibilities such as when i use to party in my early 20's. Marijuanna and cocaine use may also have been a contributer to the twitches.. i use to think the cocaine may have damaged my central nervous system. I hope i someday get to the bottom of it and really wish more doctors where familiar with bfs. I understand als needs more attention but for us who are sufferes of bfs its sometimes scary, annoying, and weird. Maybe someday there will be a cure for all these horrible diseases. Hopefully soon for all of us on this beautiful earth.

[aztwitchy]

Ive always been an athlete every since i was a kid. I played football, basketball and baseball. Im now 36 and like i mentioned earlier, have had these twitches for about 8 years. I wonder if anything i did in my younger years has anything to do with the twitching and possibly the degenerative disk disease! So many possibilities such as when i use to party in my early 20's. Marijuanna and cocaine use may also have been a contributer to the twitches.. i use to think the cocaine may have damaged my central nervous system. I hope i someday get to the bottom of it and really wish more doctors where familiar with bfs. I understand als needs more attention but for us who are sufferes of bfs its sometimes scary, annoying, and weird. Maybe someday there will be a cure for all these horrible diseases. Hopefully soon for all of us on this beautiful earth.

I'm curious what did your MRI report say about your neck? do you remember or have the specific language in the report?

[billydog]

Hey aztwitchy, yes i do have my mri results but i left them at work. Ill post u the exact results later. But i do remember i have a herniated disk in my neck (cervical) with degenerative disk disease. My mid back (thoracic) was normal. My lower back (lumbar) had a herniated disk and degenerative disk disease. My mri of the head (brain) was normal besides having sinusitis present. Im goung to really try to work on cutting out all sugars and see if that helps at all. I also had a lyme disease test and it was negative.. ill post exact results tomorrow!!; thanks for the reply.

[billydog]

Here are my mri results
Lumbar spine with and without contrast
At L4-5 there is degenerative disk disease.. there is a small left foraminal disk herniation with mass effect on the exiting left L4 nerve root. There does have potential for left L4 radiculopathy. There is no central canal stenosis.
Mri of cervical spine w/wo contrast
At C5-6 there is deg disk disease. In addition to disk bulge and posterior spurring there is a moderate right posterolateral/foraminal disk herniation that results in right lateral recess and right formal stenosis and does have potential for corresponding right sided radiculopathy. This could cause a right C6 or C7 radiculopathy. At C6-7 there is a disk bulge and posterior spurring with a small right paracentral disk herniation. There is no spinal stenosis or foraminal narrowing.

[billydog]

Emg results from the neurologist
Impression:
1. Normal bilateral median and ulnar mixed nerve conduction study.
2. (?) Right C6 radiculopathy, chronic.
3. Low normal left ulnary sensory response with entrapment distally in Guyon's canal at wrist but no evidence of conduction block at elbow sites.
4. Normal rigt ulnarr sensory response with a suggestion of entrapment distally in Guyon's canal at wrist. With mild conduction block above elbow only.
5. Prolongations median distal motor and distal sensory latencies with lower normal sensory responses - (?) Developing median neuropathies at wrist.

[billydog]

Well i just wanted to post some changes i tried to see if they work or minimize my twitching. First, i cut way back on sugar, chocolate and havent had any caffeine for a very long time now. I have increased my veggy intake and drink ensure plus once or twice a day. My sleep pattern is not good of course but by taking. 5 mill of xanax about an hr before bed helps me sleep some. I get about 4 hrs of sleep before waking up. And i have noticed somewhat of a minimal difference in the twitches but they are def still here. Its kinda weird, its like every time i think about them i start getting twitches. But usually if im occupied and doing something with my daughters or working out then i dont really notice them. Its so so strange. Its like my brain is somehow imbedded with these thoughts of twitching and i start. For example, i been having an eye twitch for a day or two, but when i forget about it then it stops, but then if i think about it then it starts twitching again. So WEIRD.. i wish i would have never ever got this bfs sh**. But i guess its life and its better than having something life threatening. I always have taken care of my body and im not going to let these twitches ruin my life. Im ony 36 and have these 3 beautiful princesses who are 10, 7, , and 6 mnths old. Ita timr to let these thoughts of twitching go and mve on with life. Thanks just needed to get that off my chest.

[billydog]

Sorry about the few spelling mistakes lol. Im sure you all can figure out what i meant. Some smart phone issues!!

[billydog]

Any responses or suggestions would be greatly appreciated!! Thanks in advance!!

[Cobber]

I also seem to be in the bad back category of twitchers. You can see my past posts for the details (I haven't posted that much, so won't take long to read). But I've gone through extensive testing (EMG, MRI) with some good hospitals and the best they can do is suggest my degenerative back is a strong link to my twitching, atrophied left calf and weak left toes.
I've done and continue to do a lot of sports. My back damage was probably through playing cricket as a fast bowler when I was younger.

Although I'm very healthy in general I went mega healthy for 4 months. Slept loads, no alcohol, daily juice, healthy food, acupuncture. And while I felt great and lost a few kg's I didn't notice any difference in the twitching. The only thing that seems to calm it down is staying busy and ignoring it (which I usually do) and not doing sport (which I refuse to stop). However the twitches don’t go away, it just means I’m not thinking about them.

I’m kind of guessing that those of us who have EMG’s and MRI’s that come back with evidence of nerve/spinal damage (even though it’s limited damage) may be more susceptible to long term twitching regardless of lifestyle changes (although changing lifestyle for the better is obviously a great thing to do regardless).

[billydog]

Hey Cobber, how are you. I also am a very healthy person but still have the twitch and slight anxiety issues. I eat healthy and for the past month or so have drasically cut back on sugars. I have seen improvement significantly on my twitching. I also have recently visited a chiro and he told me that many foods cause inflammation inside our bodies and therefore contributr to back pain and possibly twitches. Google inflammation foods and try to limit them and see if that helps some. Good luck with your journey!!