My Roller Coaster Ride with *S

Hi everyone--this is my first post here, though I'm not a stranger to this site. The past few months have been a bit of a roller coaster for me, though I have this site to thank for slowing the coaster down a bit for me. I won't bore you with the whole long story, but after weeks of being convinced I had *S, I found this site and immediately felt as though I had found my "diagnosis." I felt as though I could have written a large percentage of the posts here. My overall stress level plummeted in large part due to this site and what stress was left was ultimately discharged after being diagnosed by two different neurologists with BFS.

(Though as a side note I will say this--this site was great for me when I learned I could have these symptoms and not have some dreaded disease--it was not so great for me though afterwards because reading people's concerns about their symptoms sometimes triggered more anxiety for me about my own symptoms, so my hat is off to all of you who are regulars here who calm all the newly diagnosed down--you are amazing people!)

However late last spring I was not yet at that calm point; I was quite sure that I had *S and I was in the "I'm going to do anything and everything to deal with it now" frame of mind. I dumped my general practitioner after I told her my symptoms and she essentially told me I needed to see a therapist to discuss my "anxiety." I then found a new gp who took my concerns seriously and she helped me with certain testing and neurology appointments. I also began seeing a naturopathic physician who helped me make some dietary changes and after a series of adding this and taking away that I came up with a therapy program which works very well for me.

As I said, what follows is what works for me--in no way shape or form am I suggesting that this would work for everyone. It's my very unscientific opinion that though many people with BFS share some common symptoms that the initial underlying cause of the disorder may be slightly different from person to person. In my own case my BFS "started" after having had a weird "joint flu"--my elbows and knees were quite sore and I initially thought I was getting some form of early arthritis. Shortly afterwards I ended up in the ER after an entire day of numbness in my hands and feet which subsided after a day. A few weeks after that the twitches started and as we say, the rest is history. However, I often wonder about what other factors may have played into my acquiring BFS--I've had two falls on my tailbone and I wonder if in some small way that has played a part, as my symptoms began when I was beginning to get some pain in my tailbone area long after I'd had the falls. I also was drinking WAY too much soda and I think that all the soda I've consumed in my lifetime has in some way damaged my body's ability to keep an adequate magnesium level. There's also been a lot of talk lately about unusually high levels of pesticides in soft-drinks and so I wonder if that hasn't played its part as well.

So, this is what works for me.

First of all, I've cut out the soda. I may have one once a week at this point and that's saying a lot for me as I used to go through a two liter bottle in a day and a half.

Second, I'm taking a magnesium supplement--magnesium gluconate. This particular supplement was recommended by my cardiologist--I see a cardiologist once a year because I have PVC's (skipped/extra heartbeats) and he said that a lot of people with PVC's have been helped with this particular form of magnesium. I had taken the mg on occasion when the pvc's were acting up and it really helped. When I started getting the twitches it seemed to me that my muscle twitches were probably in some way similar to the pvc's, so I began to take the magnesium every day and it has helped a great deal.

Thirdly--and people are going to think this is the most "odd" part of my therapy--I have been using what is known as a Wet Cell Appliance. It was a form of treatment prescribed by medical psychic Edgar Cayce and is supposed to be a form of vibrational medicine. I've been using it for a few months now and all I can say is that it has truly helped me. Now, please keep in mind that when I began using the wet cell it was because I thought I had MS, and the wet cell had been recommended by Cayce for people with MS as well as many other neurological issues. I also was willing to try a Cayce treatment because a.) I've used some of his treatments before and they've worked very well for me and b.) there seemed to be no treatments for *S that were anything but hard-core immunosuppressants, and as the mother of two small children taking immunosuppressants was simply not something I wanted to do.

Now just before people start wondering, I am not trying to "sell" anyone anything. There are many different suppliers of the wet cell and if people are interested they can do their own research and see which one they think they should go with and how specifically they would want to use their wet cell.

All I can say is that after many months of trying this and trying that, I've been able to pare down what I do to the above. I notice that if I cut out one or the other parts of my overall therapy my symptoms gradually begin to come back. I also see a chiropractor as needed and I found that when I was more symptomatic a treatment of ultrasound therapy to my coccyx area elimated my symptoms for a day or so.

As for what my symptoms are now--I essentially have none. What few twitches I still have are so minor and few that I'm not sure I didn't have the same amount before the onset of BFS, and by that I mean I may have one or two a day. I remember when I was much more symptomatic and typically the twitches didn't bother me if I was busy, but if I tried to engage in a quiet activity like reading or watching television the twitches would become bothersome for me. It was also very unpleasant to wake up in the morning and after just a few moments of wakefulness dealing with that first twitch. I hated it. I no longer have that--I can wake up (and if hubby gets the kids or if it's still early) I can lie in bed comfortably without having to think about when the first twitch is going to start. Probably what bothered me most symptom-wise were the muscle spasms--twitches I could deal with, large muscle spasms worried me and unnerved me (no pun intended). As long as I keep up with my therapy routine I have zero muscle spasms.

One could ask if the success of my therapy is all in my head, and in all honesty I couldn't argue that it's not. I don't think that it is, but all I can say is that I am results driven, and if this is what I need to do to manage my symptoms, then I am going to keep doing it. I only offer it as it's my hope that there may be one or two people out there who are so fed up with their symptoms that they give this a try and that it will hopefully work for them. I don't think that I am "cured" of my BFS but my symptoms are gone and I am hopeful that in the long run I won't need to continue with my therapy. Ultimately all that I care about is that I am healthy and symptom-free and if this gets me there, that's good enough for me.

Best wishes to you all, and I hope you all find a treatment or therapy that works best for you!

I don't care if you are tyring to sell something. I want a wet cell appliance. What type do you recommend?

Interesting, I've been diagnosed with PVC's (premature ventricular contractions) also (twice, years appart with older and nwer Holter Monitor) since having BFCS.

The docs always say there is no connection, but the twitches in my various parts seem to correspond to the amount of PVC's. Guess they were all taught that the heart is a different kind of muscle so it is not activated by the same stimuli.
Well, guess this is one more thing "they" may be wrong about.

My muscles/body just seem to be "overly excitable" which I thought was a result of my high work stress level. Guess that was wrong, also, since I retired a few months ago and have been catching up on rest and my life. The PVC's are one of the first ways that I can tell that I have consumed some MSG or similar "flavor enhancer".

Glutamate and aspartate are neurotransmitters. They cause me to twitch--I know this because when I keep the concentrated or refined food forms out of my diet, I twitch and cramp WAY less.

I was diagnosed with BFCS about ten years ago. Since then, I've tried lots of things for it, but the change in diet to keep out MSG, hydrolyzed vegetable protein (concentrated glutamate) and aspartame (Nutrasweet) has helped the very most. I do take Mag but that doesn't make as much difference.

It is a lot easier to just pop some pills than to really get serous about reading ingredient labels and even "grilling" restaurant staff about food/seasoning ingredients to avoid the bad stuff, but it is what has kept my twitches in check.

I used to have to have my diet "Dr. Pepper" fix in mid afternoon to pick me up, but that went out with the rest of the diet stuff with aspartame (Nutrasweet). That was tough because I like sweet stuff and didn't want to do the blimp body. Oh well, I've traded sweets and yummy flavorings for many fewer twitches and cramps with not much weight gain.

As for autoimmune problems, getting really sick does seem to correlate to more twitches and PVC's. I've also had some other stuff that may be related; "mono" (several decades ago), being tired (figured that as the hypothyroid problem) which may be related to my (mostly?) osteoarthritis problems--aches and pains cause me to get less restful sleep. Did have a "butterfly" face rash for awhile (Lupus?) but that went away (thank goodness!).

Anyway, take care and hang in there! It is nice to be able to chat with folks who know what this is like and don't think it's all just hypochondria (sp?)!
~~~~Lyn

Hi lyn--I found your post very interesting! My famlily is vegetarian, so we consume our fair share of Morning Star Farms products. When I read your comment about hydrolyzed vegetable protein I looked up the ingredients of most of their products and sure enough hvp was in there. I never associated hvp with msg so thank you for enlightening me to that. Not quite sure what I'm doing to do about that now but at least now I know. )

As for the magnesium I recall looking up magnesium supplements online when I started taking them occasionally for the pvc's, and I found that there's a lot of information about the various forms of magnesium and that some are more easily assimilated into the body than others. That's all I basically remember so I can't speak too much on that--all I can say is that magnesium gluconate has definitely helped me. I was unable to find it at the local Whole Foods and the local health food store--the funny thing was that my local pharmacy had it back behind the counter (no prescripton needed.) Anyway, just my two cents. )

[rant] Wouldn't it be nice if just popping a pill could cure most conditions or illnesses? Unfortunately most of us in Western society are conditioned to think that this is the only way to go...I like to think that more holistic treatments are gaining momentum, but it seems as though unless a large pharmaceutical company can make $$$ off of it many treatments go under-researched or ignored. I think in this day and age if scurvy were still a common condition pharmaceutical companies wouldn't advocate people taking vitamin C to cure their condition, instead they would come up with a drug that would help you manage your scurvy. Hopefully the integrative medicine movement started by Dr. Andrew Weil will continue in momentum and we'll eventually have the best of both worlds.

[/rant]

Again, thanks for your post! I'm glad that you've found something that works well for you. )

Thank you for your post. I looked up wet cell, it was easy from your link, thank you. I am going to give it a try. Magnesium, what type. I probably bought the wrong kind, I know there is one which your body absorbs better. Could you please help on this one? I have been in the medical loop for a year, and am worse now than before. I decided to start down the natural path. I have a guy at work who did it and found very heavy metals in his body..He has followed with this and his regular dr to make sure he wasn't "being taken" and his regular dr took him off blood pressure meds, high cholesterol, etc..all "medical tests" came back normal..that's when he told his medical dr he was seeing a naturopath. Needless to say, the medical dr was amazed and told him to keep doing what he's doing, it works. He does go in for regular tests for his heart, but a year later, no signs still..He's also lost weight, says he feels better for the first time in years, energy and oh yeah...now he's my boss, he got the promotion I used to hate working with him because he was lazy..now I can't keep up.. He gave me the name and i'm going..I'm ordering one of these today, if you could also help me with magnesium confusion..thanks

Ryan,
Thank you. I figured that would be the case, I can't even have a MRI because of this thing. I can have the pacemaker turned off for certain things so if I got treatments I could do that but do not know if it would damage the leads but this I will find out from Cardio Dr. Still interested in knowing if this has worked for anyone. Thanks Ryan..Jenn