I have had alot more cramping in my calf muscles & general subjective twitcing,flinching & what feels like exagerated startles.

I have small fibre pn. I am a bit concerned, as my left leg has caused me alot of problems. I have no weakness.

Is all this still just part of having SF PN? Are these common symptoms? I have had SF for the last 20 months, and only in the last 3-4 months have I had crazy pulsating vibration feelings, and twitching and spasming.

Thanks guys-

. . . at least in terms of my schedule. I have a predominantly small fiber PN and started getting the same sxs about 18 months into my disorder. I still have some recurrent twitches and I get calf or foot cramps about 1-2 month. The cramps can be very, very painful and can take quite awhile to relax - never had anything like this before PN.

If you check around the various PN boards, you will see that this is pretty common. I am not sure if there is an exact explanation, but it seems as though the increased sensitivity, ectopic firings, and all the other sorts of malfunctions tend to predispose us to such whims sent forth by our nervous systems. As such, it may be similar to the well-known phenomenon of increased nerve entrapments as a result of PN.

I have found that since I started an intensive regimen of vitamins and supplements that the twitches in particular have markedly diminished. Also, the cramps and entrapment problems are also less. Specifically, magnesium is an important supplement for maintaining nerve health. There have been many posts in the past about this - not sure if any of that info is on this board or OBT. May have to be chalked up as another loss due to OBT not being properly run or maintained.

If you want more info about this, I can look to see if I have some info or references. I know MrsD has posted a lot on this topic. So, let us know, and I think more info can be posted.

rfinney

Hi Aussie, a few months back i was getting those calf cramps nearly every night, until Wings told me about magnesium & calcium, i got a bottle of " Herron Magnesium Plus " especially made for cramps, i got mine in Safeway and i take one every night, i haven't had a calf cramp since.
I haven't had any muscle twitching and I have no idea if it has anything to do with the PN or not, but mine is small fibre damage as well.
Brian

hi aussie,im not officially dx'ed yet,but i get those all the time-they used to only effect me at night when im trying to go to sleep,but within the last couple of days im getting them all the time and it is the most annoying.its exactly as you described-feels like exagerated startles.i hope you can find something to help.feel better kathy

Aussie,

I twitch all the time and also have jerks that startle the heck out of me. My calfs are very, very tight. I don't have cramps per say, but I do have alot of tightness and stiffness. I think everything is do to the sfp. Laurie

It's actually reassuring to know that this is still SF damage and not something else. I take a calcium supplement that has abit of mag in there, but it may not be enough apparently.

Aside from the cramps being painful, the twitching and flinching is something else. It's like my body has lost it's mind or something!

Well thanks again-

Good quality bioavailable magnesium/calcium supplements worked like a miracle for my cramps and fasciulations, my dad's (he also has PN), and my wife's leg cramps (she's PN free).

The ratio should be about 2 atoms of calcium for 1 of magnesium. Don't take more than 1,000 mg. total/day because too much may increase the risk of kidney stones. If you supplement with calcium/magnesium, also supplement with vitamin D (up to 40 mg./day) to enable the body to utilize the calcium/magnesium.

Aussie,

The calcium you take is really not going to help your peripheral nerves very much without the adequate magnesium. The 2/1 ratio that David mentioned is really the way to go.

Also, his warning to not go above 1000 mg/day is important - for men. Should not go above 750 mg/day for women.

Do not skimp on quality. The best for calcium is probably a citrate/malate combo, which can cost a little more. Just citrate alone is pretty good and should be cost effective. For magnesium, lactate is the best. Citrate is not too bad but does cause looser stool or even diarrhea - so that may or may not be helpful!

rfinney

I take Sandra Cabot's Health Formulation. This formulation costs $12 for a bottle of 90 tablets.

Each tablet has:
calcium citrate 1050 mg /providing elemental calcium 221.6mg
hydroxyapatite 240 mg /providing elemental calcium 60 mg
magnesium oxide 227 mg
Manganese chelate 10mg
zinc gluconate 6.7mg
vitamin K4 7.5 mg
copper gluconate 3.5 mg/providing elemental copper 490 mg
Boran(as Borax) 750 mg

The bottle recommends to take 1-4 tablets daily. I take 2 in morning and 2 at bedtime.

Also I take B-complex (homeopathic blend) which also has an additonal 60 mg of magnesium oxide.

No good?? Am I taking too much?

Also this may be a bit weird sounding,but I have wanted to ask for a while now. If people have twitching and muscle spasms like me, all over, legs,arms, trunk etc. Why don't we also have heart twitching or spasms. I mean not too long ago I had Gerd if you remember and I had terrible esophagal spasms. What stops the heart from also twitching also? Isn't the heart a muscle too?

Is actually providing less than 10mg of elemental magnesium. When you need
at least 350mg/day from YOUR diet.

Just about any food source will provide more for you. one cup of yogurt has
47mg in comparison.

Supplements with magnesium oxide in them are useless. The calcium looks okay.

I think you miscopied some of the list as milligrams, as they should show
as mcg micrograms. (the last 3).

I think it is interesting that elemental calcium is provided but not the mag.
Also the magnesium in the oxide form looks good on PAPER, but it is just
not absorbed by the body (this is from new studies-- I have that on my magnesium thread here on the Vitamin Forum). Throwing in that chelate is
odd too..but many do that now. It makes it look good, but most chelates are only 10% magnesium. Magnesium supplementation is confusing and most people think they are getting something when in reality they are not. That is why I put up the thread. So please take a look.