Three Years of Twitching and Cramping

[Gregthepower]

March will mark 3 years of my first noted leg twitch.
This February will mark 2 years with left hand cramps and twitching index finger.
.
Two negative EMG’s (last one was 18 months ago).

I was told it was BFS and one suggestion was that maybe I type incorrectly, keeping my index finger raised, I “ruined” a local nerve.

Anyway, fingers still twitch and some days I am fine, (no twitches except the constant “bad” left hand index finger). Left, (bad) hand strength is good except some days I cannot “control” this finger when typing. It is easier to keep it raised and not use it.
The “meat around the thumb /palm always aches.

Strength in hands is good but they (and arms) do “shake” when carrying heavy objects for semi long periods of time.

Left outer shin will cramp as will one half, (outer portion ) of my left foot. It feels unstable “wobbly” at worst, (aggravated after a cigarette, which I stopped)., Yesterday, I was fine … Saturday I was terrible and had to get off the foot. Today I am “so-so”. now.

The generalized fasciculation’s that jump all over my body, come and go. My overall body strength is good.

**** KEY QUESTION I have had my left wrist in hand girdle for 18 months and note minor muscle loss. Could this be from JUST being under the tight brace/girdle non stop for nearly two years?

I know you can tell me to go get re-tested, but I am not emotionally strong enough.
Can anyone say with assurance that if it was the “bad” thing, overall, I would have “failed” more by now, (coming up on two semi dramatic years?)

Thank you for listening to my stuff. I cannot share it at work, home or anywhere else.

Be well - ALL OF YOU !!

[email protected]

 

[Fritillaries]

Greg,

I'm not an expert on the matter but I can say definitively yes having a brace on an arm could definitely lead to the appearance of atrophy. I've seen numerous friends have a cast removed for a broken bone and the limb the cast came off of was noticebly smaller and weaker than the opposing limb. It takes exercise to keep muscles in tone, if you wear a supportive brace, you remove the need for your body to provide normal muscle contractions for support hence you'll probably see some leaning of the muscles.

Regarding your shaking arms, my arms used do that tremor/shake thing when I pick up or carry something heavy for a period of time. I found that lightly exercising my arms with dumbels a couple of nights a week for about 15 minutes totally cures that problem in just a few weeks. It seems like when people get BFS they tend to do one of two things, either start exercising like crazy making their symptoms worse, or they stop exercising all together creating new and strange symptoms like the muscle shaking when they pick up something heavy. I think this is just some mild weakeness due to lack of exercise.

I have a leg thing going on two, this weekend my leg was stiffer and more painful than normal, then today it is fine. Again, this is pretty typical of BFS. BFS waxes and wanes and ALS doesn't.

Try to put the BFS symptoms out of your mind and do the things you would normally do if you didn't have BFS. Thats the best way to keep your body normal without creating additional and unrelated symptoms.

Also try to accept that BFS is a strange thing and that your symptoms will tend to migrate from one place to the other, and may present themselves in many weird ways. Most of the time they just temporary, but over focus and anxiety can prolong and make them appear worse.

Good luck,

-dranyab

 

[LisaQ.]

Yes, braces and splints can cause atrophy. In fact, most docs recommend you don't leave them on 24/7 (if you can help it,) for just that reason.


Oh, and yup, you would be a train wreck by now if you had you-know-what. The fact that you have no clinical weakness after three years (heck, after three months, or even three weeks, etc...) is an absolute indication that it isn't **S.

Hope this helps,
Blessings,
Sue

 

[Gregthepower]

Thank you all for the good words. Naturally this compounded by the twitching and off/on lightness in the hands can be scary. I cannot thank you enough - I have to go forward with hope and less fear. Your words mean a lot more to me than the 9 neurologists I have seen (I am “on strike” form docs for the last 6 months.

I wish you all health and only good things in your life!

Greg

 

[LisaQ.]

aww shucks, Greg, thank you so much.

I'll be sure to tell Moses the cat that he has yet another admirer. He is getting quite the swelled head and is demanding lots of extra Fancy Feast because of his celebrity status.

After nine neurologists I'd say now would be as good a time as any to go on strike for a while.

Blessings,
Sue

 

[TrisTrip]

I can’t add much more than that.

Try the cal/mag (you're probably doing so already) and try and search for some type of vitamin or mineral deficiency.

Some people on here would give their left tactical to be three years and no weakness. It sounds strange to say; but you’re lucky to have this reassurance that everyone else will have to wait three years to get.

Everyone will eventually get the "time reassurance" but they may (foolishly) wish their life and time away to get there.

My advice; Fresh air and plenty of sun-shine for everyone.

Also, go plant a big sloppy kiss on your wife/ partner/ pet/ LisaLM's kitty (*beep* that sounds bad)... guy on the bus sitting next to you (whoever) - because you, my friend, are going to die of old age.



Jeff