Old-Timer Shares Muscles & Progesterone Info

[alyLeoNCali]

Hi from an old-timer.Here to share a weblink I just came across that provides a friendly, fairly simple description of how muscles work. In fact, I noticed, the webpage was written by an acquaintance of mine!Another friend recently shared info with me about the female hormone progesterone. Hearing that progesterone may protect the myelin sheath on nerves, she asked whether a hormone imbalance (low progesterone) might be a cause of BFS. For example, demyelination (loss of the myelin) is related to the muscle weakness associated with MS.Based on what little I've pieced together, though, BFS doesn't seem to affect our nerves (good news, I'd say). Rather, the BFS symptoms have something to do with the calcium ion channels in the muscles themselves. Below is the "short" explanation that I came up with.There are some real medical sharpies on this board who believe BFS is caused by a calcium ion channel problem (possibly immune-triggered and also possibly permanent) in the muscles. Nerve cells send neurotransmitters to the muscles, to tell the muscles to work. To contract and then relax, a muscle relies on its calcium system: A Ca gate opens, the Ca ions flow through channels, and the muscle contracts; then the Ca gate closes, and a pump relocates the Ca back to its starting point within the muscle.So it seems that if the calcium gate doesn't close efficiently, or if the pump doesn't work efficiently, the muscle contracts properly but just won't completely relax afterward. This explanation fits with experience in that I don't have any actual weakness (even if it occasionally feels like it). It even fits with my wacky observation that at least some of the people on the board notice that they've gotten thinner and/or more muscular. I mean, it makes sense if your muscles are constantly working overtime.Anyway, I've been twitching, etc., for more than 4 years now. This BFS crap hasn't gone away, but I hardly ever notice it anymore. Hoping you all can feel at least as good!--alyLeoNCali

 

[AllGoodHere]

Hi Lee - Thanks for the post...I've been reading through this stuff for years and I do believe this is part of the picture. However, this area in question is a nerve-muscle interface and the switch analogy is a good one but not complete because of the interaction of it with so many other systems. Plus there is the idea that, for some of us with the autoimmune version of BCFS/PNHE, our antibodies are actually blocking the switch-gate and not allowing this interface to function properly. SO perhaps for some it is the faulty switch miss-firing every nano-second, and for others it is a wacky immune system, and still for others it is their bodies' inability to process an analyte that interacts with these switches and nerves and muscles. But glad that you brought this in for discussion. I think it helps us to have some understanding of possibly why things are going wrong and it is not bad karma or luck or some awful disease that is on the internet.

 

[alyLeoNCali]

And thanks for adding your insight, AllGoodHere!You correctly point out that my simplistic explanation isn't the whole picture. My intent was to describe the mechanics of BFS in a way that non-medical people (like me and my loved ones) can understand, as well as to provide assurance that BFS symptoms can be explained by something other than one of those dreaded diseases or "anxiety."--alyLeoNCali

 

[Krackersones]

alyLeoNCali,Thanks for your imput. I don't know if you've read my posts but I just received word of having a very high ANA titre so I'm about to go down the road of seeing if my twitching (really it's my only symptom) is being caused my autoimmune antibodies effecting my ion channels (I think this is the right terminology). Have you pursued this angle in your own case? If not, why? I know you said you feel fine and are able to ignore your twitching. Are you thinking that any treatment based on your theory would not be worth the risks given that you feel fine?Krackersones

 

[empbobcat8]

alyLeoNCali,It was interesting that you mentioned that people have noticed getting thinner and more muscular. I have gotten thinner, and some friends have commented that I look more muscular. What's funny is that I had a baby a year and half ago and have not been to the gym since. So there is no way I should be more muscular. Also, regarding the autoimmune antibodies theory. I was diagnosed with Celiac disease a few months ago. It is an autoimmune disorder. Could it be related?Dawn

 

[AllGoodHere]

Dawn - I have a friend with Celiac's - she said it drains your body of calcium. Have you been tested for Ca? Low Ca can cause twitching.

 

[empbobcat8]

No, I have not been tested for it. I have started supplementing with cal/mag and the twitching has seemed to lessen. I have an appt. with my GI doctor next week. I will ask her if I should be tested. I probably should for all vitamins and minerals since Celiac does effect absorption of nutrients. Dawn

 

[NinaPost]

Thank you for posting the article (brings me back to my university physiology lectures!). It was very interesting. Sounds quite plausible (with nerve interaction as well though).

 

[Kailee]

well. about this thing of calcium ion. The first time I went to my neurologist He made me all kind of exams and he said that one of the things that can explain my simpsoms was the fact that I am losting calcium from my bones through my rins. although the levels of calcium in my iron are normal he wanted that my (nefròlogo) I can`t say it in english, would check my ionic calcium. When I told this to my doctor he said that this had nothing to do with muscule twitching but if I wanted he could ask for an exam to check my ionic calcium, which I refused.Now that you are telling this I think I should do it. I will ask to my neurologist to make me a test to check my ionic calcium as he suggested at the begining. Remember taht my neurologist stongly suggested this so it is not a nonsense.

 

[alyLeoNCali]

I spent a distracted hour to compose a LENGTHY post in which I said thanks and attempted to thoughtfully and thoroughly respond to your various questions, and when I went to send it, I was timed out and the entire message disappeared.--argh!! This has happened before; when will I learn to save it as a draft until ready to send? So here's a sloppy, short version....Like many of you, I'm sure, I've tried all sorts of stuff to see if I could minimize my BFS symptoms. Sorry to say, none of the things I tried over the years (magnesium supplement, B6 supplement, avoidance of tannin-containing foods, iron megadose, Power-Ade electrolyte drink, etc.) have provided any "a-ha" discoveries. Besides calcium, there are magnesium, sodium, and potassium (K) ions that may be at play. And there's lots on this board linking to voltage-gated potassium channelopathy (VGKC) as an immune-related cause of BFS. Both AllGoodHere and Postpartum believe there's nerve involvement as well as muscle involvement, and that may be the bigger picture. However, that interaction is more complex than I can understand. It makes sense to attribute weird sensations to nerve problems, but I note two things that make me think the extent may be muscle and not nerve. I see lots of posts about EMGs and NCSs coming back all clean. Have a few people here gone as far as muscle biopsy? Eeuw. Also, many BFSers note how their hot spots just move from place to place, over the space of hours or days, which wouldn't be expected if there was nerve damage. So we'll just keep theorizing and hoping the doctors actually figure it out....Krackersones asked about ANA. I never got tested but read about it because it was also linked to infertility. Krackersones, was going to suggest that you search this board for "plasma" but then read some of your posts and realized you're "all over that." Didn't pursue plasmapheresis (same as plasma exchange?) because the success rate seemed rather low.And doglvr (I'm a dog-liver too--I mean dog-lover), I am sorry you are coping with celiac disease. I hope your BFS symptoms diminish as you figure out how to manage the celiac disease, which seems like something that requires lots of trial and error. Possible there's a genetic predisposition to BFS along with environmental triggers. In your case, celiac disease may be the environmental trigger (with intestinal absorption so challenged).--alyLeoNCali