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Old 01-17-2014, 08:37 AM #11
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Do you notice the fasics more when you are hungry? That would be a clue to blood sugar changes.

Did you get the magnesium lotion yet? Morton Epsom Lotion?
Rub it on the area that twitches and your fasics may be gone!

Magnesium in supplements can only get to areas with good blood flow and if there is a constriction of any type in blood flow (say too tight of socks--which my son had), then the oral magnesium does not get to where it is most needed. This includes the feet too.
This is why the magnesium lotion is so nice. You don't use much...just a little dab and bingo.. most problems fixed easily and cheaply and correctly.
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Old 01-17-2014, 08:52 AM #12
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I am going to give you a long long link....and there is a part 2 also, where this poster from our MS board...finally saw "the light".
After spending thousands of dollars over many weeks.

This is only the part 1 of her journey. She found this person thru a Veterinarian, who was diagnosing and treating her cat...who BTW was also a fraud (and her cat relapsed seriously). (discovered later).
Her last post that I have seen:
One thing I have developed through my short journey is COMPASSION. It literally breaks my heart and makes me want to change my career just to help and encourage people.

I found part 2. Most of what I gathered from part 1 and part 2 is that she felt she was making progress... 3 steps forward, one step back. She is less heat intolerant. Reduced migraines. Improved digestion. Reduced skin flushing. Overall feeling better. She has spent a ton of $, but she says she would do it again in her last post. Is all that a placebo effect?
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Old 01-17-2014, 08:57 AM #13
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Do you notice the fasics more when you are hungry? That would be a clue to blood sugar changes.

Did you get the magnesium lotion yet? Morton Epsom Lotion?
Rub it on the area that twitches and your fasics may be gone!

Magnesium in supplements can only get to areas with good blood flow and if there is a constriction of any type in blood flow (say too tight of socks--which my son had), then the oral magnesium does not get to where it is most needed. This includes the feet too.
This is why the magnesium lotion is so nice. You don't use much...just a little dab and bingo.. most problems fixed easily and cheaply and correctly.
I haven't been able to determine a pattern for the fasics yet. I'm going to start a journal noting food, weather, stress levels. I'm curious to see if I can develop a link between my appetite and the twitches.

I did buy the magnesium lotion! I was told to avoid all supplements for 48 hours after my doctor visit. So I will be starting the lotion again tomorrow. Interesting note about blood flow... I always wear two pairs of knee high socks. Just something about wearing dress shoes and needing additional padding. But, I do get the fasics in my quads, hamstrings, glutes too...
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Old 01-17-2014, 09:01 AM #14
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If you are not on any thyroid meds at all then a low TSH can by hyperthyroid. A low number while on meds is not. Also make sure it says FREE T3 and not just T3.

It may not be your problem at all but it's info about thyroid that I found invaluable in a time when doctors blindly go by outdated info and TSH only.
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Old 01-17-2014, 09:45 AM #15
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Lightbulb

Here is a nerve diagram of the legs, showing the distribution of the nerves. If your socks leave a dent in your tissues, when you take them off....they could be squeezing or irritating your nerves too. And over time you can irritate your superficial veins too.

http://www.innerbody.com/anatomy/nervous/leg-foot

My son had a terrible time with plain old tube socks. I had him get the new oversized ones...and his foot issues stopped.
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Old 01-21-2014, 08:42 PM #16
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Quote:
Originally Posted by mrsD View Post
Here is a nerve diagram of the legs, showing the distribution of the nerves. If your socks leave a dent in your tissues, when you take them off....they could be squeezing or irritating your nerves too. And over time you can irritate your superficial veins too.

http://www.innerbody.com/anatomy/nervous/leg-foot

My son had a terrible time with plain old tube socks. I had him get the new oversized ones...and his foot issues stopped.
Just a quick update...

I have been applying the Epsom Magnesium Lotion daily on my legs. I'm also back on my magnesium supplements (still taking the asporotate until it's gone - 3 x's per day @ 200mg). I stopped the magnesium intake for a week as I had blood drawn for food allergies (no results yet). The fasciculations are reduced, but not gone. They are still primarily in the calves when sitting or resting. Every now and then I'll still get one in my glutes, knee cap area, while standing. Really anywhere.

I added 5000mcg of methy b-12 once / day. I took my first around 3 pm by letting half dissolve under my tongue then I just chewed the rest. Tonight my right hand (pinky, ring, and tips of middle, index, and thumb) is pretty numb and achy. Translates up my forearm a bit... underside near Guyon's canal. Front of my left shin is also a bit numb tonight. Came out of the blue. I doubt that could be from the b-12 addition. That's the only thing I changed today. I'm going to read up on the "stickied" b-12 thread.

Another addition to the symptom list is that I feel my neck has pressure around the thyroid area from about 9am-4pm. I believe this may be related to my cortisol level output and thyroid activity? Again I'm guessing. Feels fine now (writing at ~830pm). Feels fine when I first wake up. But it just comes with anxiety through my work day. I'm getting a full blood panel this Monday to look at TSH, free T3, free T4, B6, B12, iodine, zinc, copper, magnesium. I'm also going to do a saliva test to see how my hormones fluctuate throughout the day. Honestly... the only thing that is stressing me out are my symptoms. lol.

Other than this menagerie, life is spectacular!
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Old 01-22-2014, 01:56 AM #17
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Don't take vitamins for about 5 days before any blood work for measurement of them.

You will get results with artificially elevated numbers. B6 is held in the body in the muscles for a while. It might be best to avoid it for a week or more.

The MMA test is also helpful for B12.... to show if B12 in your food etc is actually working. A low result is good, elevations demonstrate B12 failure somewhere in its cycle. (absorption, transport, activation). There is also a new test, transcobalamin which is not available everywhere, that will show if you have
transport problems.
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Old 02-07-2014, 12:51 PM #18
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Another update... my wife and I just returned from a trip to Guatemala. I have been on a very strict diet. Unfortunately the food I ate during the trip has caused my digestion to go on defcon alert... going on 5 days now. Just very soft / liquid stools. My appetite is great. I'm a little tired and also have a hoarse voice from the dry weather. But, I've never had diarrhea stick around this long. I'm replenishing with water and Pedialyte (against my will due to the the added food coloring). But it has really worked well to calm my stomach, but still having the runs. Will research more natural remedies. But, just hoping that getting back onto my strict diet will push out whatever it is I'm dealing with.

Anyways, the point of this update is that I feel I'm linking a few things together. I'm beginning to believe my numbness symptoms and fasciculations are related to my stress, magnesium, and blood sugar levels. When I first wake up, I have quite a few twitches all over and some numbness around my ankles / big toes. As I get up to get into the shower, that generally wears off. After I eat something, the fasics generally improve, but not 100%. If I go a step further by eating lunch and taking a Clonazepam for anxiety I really feel a lot better overall. The reason I noticed this trend is because I am horrible with flying. I know this isn't smart, but I have to approach flying pretty uniquely. Had a bad experience once, so it takes a lot of courage for me to strap myself in. So, for our first flight, I had a few beers, took a Clonazepam, and a Xanax. I was doing great. My stress was low, no numbness while walking. Reduced fasiculation. Same patterns during our other flights and airport walking. The reason I felt it important to bring this up is that most of the doctors I talk with just look at my blood work, give it a thumbs up, look at my MRI, give it a thumbs up, and say "dude... chill out!... it's stress."

I don't want my solution to be "anxiety pills, beer, wine." I think the long-term impacts are not favorable. But, it sure gets the constant worry about my symptoms and potential diagnosis (whatever it is) out of my head. Helps me just focus on life!

I did have bloodwork to look at my thyroid again. Feedback over the phone is again that "everything is in range." I'm getting a copy mailed to me. Will update again with specific parameters.

My sympathies to all those dealing with whatever neurological disorder that is impacting you.
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Old 02-07-2014, 01:58 PM #19
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What happens with Benzos..like clonazepam...is that you feel better while the drug is working, then when it wears off there is a "price" to pay--rebound. Basically the drugs in this family work on the Gaba system, and when the damper on the nerves is gone, the nerves react more for many people...leading to taking the drugs more often and hence developing tolerance eventually.

I don't buy the "stress" thing 100%. People need some stress to function well. Huge stress over time elevates cortisol too much and this gets into the brain and wreaks havoc with the hippocampus (memory) and other functions.

Over time using Benzos become robbing Peter to pay Paul. They create much more symptoms than were relieved in the first place.

This is just my observation of people on these drugs for long periods of time. I've seen Klonopin habituees trembling all over when they run short of pills. Some can't even function.

When Valium first came out, it was not a controlled substance. Many people became habituated to it, to the point of having seizures when suddenly stopping it. None of this risk was known or revealed by Roche...but it became a health crisis of sorts.
I used to see 5-10 bottles of 500 (5mg) go off the shelves per week at one point. At that time it was an unheard of movement of one drug. I was even interviewed by NYTimes reporter about the volume of use of Valium. There was a movie made about it in fact.

Of course as Valium lost its patent, Roche came out with Klonopin (clonazepam) which is far more habituating than Valium ever was. It binds very tightly to receptors and has a longer half life...and was promoted mostly for some various seizure types. But in the end it was appropriated by the psychiatric community where it now resides. It is the most difficult to withdraw from, and that can take painful months. We've had posters here describe this process in the past.

So taking a Benzo before a painful test or dental work or airplane flight, is one thing. Taking it regularly for fasics...is quite another.
Just keep that in mind.

And as concerning your GI diarrhea...Pedialyte does not have enough potassium to replace what you are losing with the loose bowels. Neither does Gatorade. One serving of gatorade has 30mg of potassium. 1 twelve oz can of V8 juice has over 800mg of potassium. The body secretes potassium into the colon for temporary storage, and then reabsorbs it slowly to buffer what is not coming in thru food. With chronic diarrhea large amounts of potassium are lost. Foods high in potassium are potatoes, oranges, bananas, cantelope, meat, beans, yogurt, many other fruits. You need 4.5 grams ideally of potassium a day.

I'd get some Kefir, with its 12 probiotic content, and drink that --8oz aday--to help restore your bowel flora.
You can use Imodium OTC as needed. But if this continues you may have a parasite (Giardia is the most common), and need treatment. Unfortunately the treatment is Flagyl which is hard on the nerves too! So using the Kefir would be a much better approach and also provide potassium for you. Lifeway Kefir is now in most stores. It is inexpensive and tastes really good.
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Old 02-28-2014, 04:49 PM #20
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Another update:

It has been about 3 weeks since I've been on here. I got "Google" friendly and started to research muscle fasciculations more as they have been on the increase (during my trip to Guatemala and since coming home). Of course... I came across &LS. I went into freak out mode over that and basically went into a "relapse" of sorts:

- bilateral ulnar problems returned (mild tingling, numbness, some aching)
- bilateral median problems returned (mild tingling, numbness, some aching)
- left leg shin numbness (transient when walking... not always present)

I started doing strength tests multiple times a day and of course started to give myself perceived weakness. I ended up seeing my Neurologist two more times. Each clinical exam I pass with flying colors. I can't demonstrate the twitching. I have minimal pains or numbness. Zero clinical weakness. I had a nerve conduction study on my upper extremities. All she could find was some very mild carpal tunnel on my right wrist and very mild cubital tunnel on my left elbow. Barely detectable. EVERYTHING else came back great on the nerve conduction. She told me I have very minimal "neuropathy"... and mainly in my left arm if anywhere... and that arm gives me the least problems. She also did an EMG (and felt bad doing so). I specifically wanted it for peace of mind. I just wanted to make sure I didn't have any muscle problems or motor neuron problems. She looked at me funny and told me that she could tell me with her eyes closed that I didn't have &LS. I don't even want to spell it out. All my EMG points showed strong neuron amplitudes and activity... so I'm happy there. But, boy am I sore today!

I started weaning myself off the Klonopin 10 days ago. I was taking 0.5mg once / day around noon. I'm down to 3/4 of 0.5mg once / day around noon. I plan to continue cutting it down by a 1/4 every two weeks until I'm done. I just don't want that to be a solution.

Everything that I'm dealing with seems like it falls into the benign fasciculation syndrome (BFS) category. I've been floating on aboutbfs.com a lot lately. Everyone over there is dealing with what I have... literally to the T. Muscle fasciculations everywhere, transient sensory issues, bilateral ulnar issues, no nerve damage detectable on nerve conduction, normal EMG, symptoms increase when they are sick or stressed out, jello legs out of nowhere. I'm hoping this is all just peripheral nerve hyperexcitability (nerve irritation sending me mixed signals) as opposed to a truly progressive neuropathy. All my doctors and neuros don't use that word neuropathy with me. They use the word stress over and over and over.

My approach is to de-stress naturally, eat healthy as much as I can, stay active as much as I can, magnesium lotion, sea salt baths. I'll keep in touch!
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