fasciculations (muscle spasms) but they're also in my brain..

[soofke]

aloha,

I have ME since the dark ages and after a combo of antibiotics for mycoplasma and weird drops for ebv/hhv6/toxoplasmosis/lyme/coxsackie B (with which it al started) I've been having these odd spasms which are according to a ME specialist and a neurologist fasciculations but those are not supposed to a) be in your brain b) movable, I can sort of direct them from one place to another, dontaskmehow c) curing; when they're in 1 spot for a long time then something snaps and I can for example all of a sudden read a book, which I couldn't for years d) be brutally painful, especially in my head, but not complaining since they seem to help me and painkillers work for days

been to an eye doctor last month and he never saw it this bad in someone my age, or in both eyes (my visions has been blurred since taking Carnitine by the way) and wants me to see another specialist but he's booked full til next year, I doubt that this is still going on by then, which means physical evidence will be lost, not entirely uninmportant in a disease that nobody can see

is there like a hotline for visible and possibly even curing symptoms?

 

[pattismith]

If you are looking to other patients with fasciculations/muscles spasms/twitching muscles/twitches, you will find a lot here if you do a search.

 

[soofke]

neh, I've spoken to enough twitching ppl to know my diagnosis is incorrect but thanks! (unless theirs make a popping sound too and release neurotransmitters)

 

[soofke]

requested my MRI, inspired by Jen Brea, the pain is coming from a spot that I can't find on her or healthy MRI's

 

[soofke]

an MRI-nurse that happened to be in my fb group checked it out and the spot isn't worrisome but the somewhat lighter pituitary gland is, told my GP and going to the so manieth neurologist next week, wish ME luck tho nobody reads this

 

[Mel9]

Good luck!

 

[soofke]

merci Mel!

 

[datadragon]

Good Luck.

fasciculations/muscles spasms/twitching muscles/twitches for me were all signs of magnesium deficiency as a starting point, blood levels dont correlate to levels in the tissues. An example is you can eat a couple bananas and take a blood test and will see high potassium since you just ingested it. But in reality your tissues can be very low in it and need supplementation. The only oral version that worked well for me for magnesium to relieve symptoms was Bioschwartz Magnesium Bisglycinate (200mg per capsule). There is a topical spray that will work, its magnesium chloride oil. Boiron's Magnesia Phosphorica 30c which is a sublingual worked in minutes to start relieving symptoms, but is not sufficient to relieve deficiency by itself. I bring these up because many of the oral forms did not absorb well, require stomach acid which is low, or forms like magnesium oxide which says say 400mg might only absorb 4%, so thats actually 16mg not 400.... Some of the other ones like Doctors Best Magnesium Glycinate did not relieve symptoms for me. Epsom Salt baths or foot soaks are another way to bypass gut Mag seems to help both muscle and nerve pain.

 

[soofke]

wow you know a LOT about magnesium, there was a magnesium deficiency (which in the GP's test just showed up as a vitamin D problem), took it in every way shape or form and makes no difference to the trembling, only to my MCS but only when I added some calcium sulfate

thanksies

 

[datadragon]

wow you know a LOT about magnesium, there was a magnesium deficiency (which in the GP's test just showed up as a vitamin D problem), took it in every way shape or form and makes no difference to the trembling, only to my MCS but only when I added some calcium sulfate

thanksies

Here are just some of the many symptoms of low magnesium. Its also involved in over 300 enzymes/conversions in the body, everything from vitamin D and B6 conversions to active form, for ATP energy in the cell as it needs to be bound to a magnesium ion to be active, help converting cholesterol to pregnenolone for all the hormones in the body, its needed for serotonin and melatonin so a lack can cause depression, anxiety, and sleep issues. So many things can be effected by a low mag.
http://www.magnesiumeducation.com/mg-deficiencies

As long as you have symptoms such as twitching and spasms, it usually indicates the body has a demand for more magnesium. viruses and any stressors to the body increase that demand. Magnesium will detox cells so people who have been deficient awhile may need to increase slowly as toxins/stored heavy metals will come back into blood and cause detox reactions and need a binder like pectaclear to remove them ongoing until the adrenals are functioning better and the body is better able to detox on its own.

 

[soofke]

well that went as usual, not unfriendly but seemed a bit bored and thought nothing of the fasciculations or whatever they are, sent him an email afterwards with pics of my inside out turned eyelid (which regular spasms wouldn't be able to do) and the same MRI but with some added contrast by photoshop and then the pituitary area lights up more clearly, but no answer so far, alas!