Question about fasciculations

[ltr]

Hi Liz,

You are about 4 hours from me, but it's in the same part of NY. We have about 18" and it is 3 degrees this a.m. The wind chill is supposed to be 20 below all day.

I am curious and hope you don't mind if I ask you a few questions?! You mention that you are working and I wonder why my twitching and weakness gives me such an awful feeling of "unwell" so that I can't seem to get out. Also, the unbelievable lack of energy or fatigue or whatever term I should really be using. I want to work so bad. No because I'm a workaholic, but because I so badly wanted to make something better of myself and really had plans for my new degree. I wanted to be somebody, be able to take my kids places and buy them things. If I have time left, I would like to try, but where is the energy? Is there medicine to help or am I just being effected differently? I know I haven't been diagnosed yet, but there is no doubt it is an MND. Sorry for all the questions, but I am really trying to do the best I can. Thanks Liz. Leslie

 

[liz]

Hi Leslie -

My progression so far has been mercifully slow so with some adjustments at work (from doorknobs to voice recognition software) I'm able to continue working and I will for as long as possible because we are supporting four school age kids and also because we will be needing funds to finance a move to a more accessible home. My energy level is OK. I put great stock in getting a good night sleep. Also, I'm not a single parent so my load at home is halved. Managing the household on your own - no wonder you're tired.

I don't know if this may apply to you or not but it isn't uncommon for someone facing down the possibility of having an incurable disease to become depressed. That effects people's energy level too. Might be worth exploring with the doctor.

It's freezing here today but we're all dug out. Taking the younger kids to see that Bridge to Terabithia movie today. Starting to have trouble eating the popcorn because it is hard to pick up but determined to find a way because it is so yummy. I figure we're sitting in the dark so if my manners aren't great, who's to know.

Happy President's Day!

Liz

 

[ltr]

Thanks for writing back Liz. I plan on talking to the neuro on Thursday about an antidepressant. I did try a couple before and they make me "speed" with a really fast heart rate, racing thoughts, etc. so my primary doctor quit trying them. I hope there is something else out there! I am not sure if that is why I am fatigued or not. I seem to get short of breath and just "rag doll" feeling and have to sit. But, they say depression can cause all kinds of things. The thing about me is that I am willing to try anything and to listen to different ideas. Who knows, maybe it could be something uncomplicated.et

Sleeping is terrible for me because I get foot cramps, my whole body vibrates and I get like electrical surges all night long. The feeling of vibrating is probably what bothers me the most But, I still get 6 to 8 hours and am then fatigued by noon or 1.

All three of my kids went on a ski trip today (they are in ski club at school). We had a rough morning start, but they are off. So, it's below zero, but I have the day to myself! It's supposed to get up into the 20's and by Thursday 40. Yahoo! Leslie

 

[CindyM]

Hi Leslie- you mention a symptom that nobody else seems to talk about. I was beginning to think I was more unusual than people lead me to believe. (LOL) I feel terribly unwell when I am overtired, and nauseous as well. If I get about 9 - 10 hours of sleep I'm fine but if not I sometimes I feel too ill to eat. That's a red flag for me. I've always had a healthy appetite so if I don't feel like eating then it must be time to call out the Red Cross!

None of the usual suspects for these symptoms seem to make sense: it can come on a day when I am celebrating the completion of a great project at work, or the planned visit by my grandchildren. So depression doesn't seem to fit. I think that my nervous system is in overdrive and that explains why I feel horrid. Just a theory...

 

[ltr]

And a good theory it is...Overdrive explains it to a tee. It's funny that you say that because I had a 24 hour urine that had way too much norepinephrine, epinephrine and adrenalin. The doctors so far have not been able to explain that. First they thought I had an adrenal tumor, but the tests came up clean.

This week I have been eating two meals a day because that's all I can get in me. I just don't feel like it. Very strange.

 

[n4wdx]

Fasciculations, thyroid, and adrenal

I had an onset of fasciculations, not feeling well, fatigue, etc. starting insidiously in 2006. It then started getting much worse. I also felt weak and shaky at times. My neurology exam in early 2007 only came up with benign fasciculation syndrome.

I eventually came under treatment for chronic fatigue syndrome and fibtromyalgia. When I was strated on physiological levels of cortisone and thyroid (T3) supplementation, I had good resolution of the fasciculations, weakness, fatigue.

I have resistence to T3 in my cells, apparently due to mild heavy metal (mercury, lead) poisening and chronic infection (mycoplasma). The only type of thyroid that worked was pure T3 in a sustained release formula. It cleared much of my problems within 48 hours. Fibromyalgia may be caused by metabolic thyroid deficiency. See the book by John Lowe MD entitled The Metabolic Treatment of Fibromyalgia.

Adrenal fatigue or insufficiency is commonly associated with chronic stress or infection and is underdiagnosed by the medical community at large.

Even if someone has ALS, it seems that the hormonal issues should be normalized as much as possible. :|

 

[Zaphoon]

The best cure-all for worry about fascics, fatigue, weakness and depression if you fear you have MND is to see a neurologist you can believe and have an EMG done. When the neuro sticks his EMG needle in the muscle and wiggles it around a bit, he/she will be able to tell you if you need to worry about the fascics any longer.

Once the good neuro gives the "all clear" for ALS, breathe out a big sigh of relief and let the doc point you in a new direction.

The only way to truly find out if your twitching is benign or pathologic is to have those annoying, little twitchies examined by a licensed, good-looking, smarly dressed neruologist!

(a nicely perfumed one, pleasantly spiced could do wonders for the experience...)