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Neurological Concern (Inner Tremor, Sleep Shakes) Mystery Illness
I am a 29 year old, white male in Michigan, USA.
As many visitors here might experience, I have had an array of unusual neurological symptoms over the past 8 months. I have seen several doctors and specialists (including second opinions) to include neurologists, infectious disease docs, etc. I have had pretty much every test under the sun (HIV, MRIs, EMGs, EEGs, Sleep Studies, Western Blot, and the list goes on and on) and everything has come back normal except for 1 and I will go into that further down.
Ok, so let's get on to my symptoms. At times I have this feeling of an inner tremor of sorts. It is real hard to explain to someone who hasn't felt it but I would correlate it to having an extreme feeling of a caffeine buzz. I actually feel my entire upper body tremor internally for a period of time and then as mysterious as it appears it just goes away. There is really no set schedule on when it comes and goes other than at night which I will get to next paragraph. It thus far comes and goes randomly but appears to be coming on more frequently as of recent. The odd thing is that if my wife touches my arms or stomach or chest, etc., she cannot feel a tremor type sensation, I only feel it internally.
Having said that, at very minimal times will I actually notice a difficulty holding my hands stable if I try to hold them in a certain, unrelaxed position. For example - if I try to hold the phone to my head at just the right angle, sometimes my hands will tremble trying to hold it, but at other times, no problem at all. I only have the problem when I have the internal tremor but most of the time I have the inner tremor I still don
As many visitors here might experience, I have had an array of unusual neurological symptoms over the past 8 months. I have seen several doctors and specialists (including second opinions) to include neurologists, infectious disease docs, etc. I have had pretty much every test under the sun (HIV, MRIs, EMGs, EEGs, Sleep Studies, Western Blot, and the list goes on and on) and everything has come back normal except for 1 and I will go into that further down.
Ok, so let's get on to my symptoms. At times I have this feeling of an inner tremor of sorts. It is real hard to explain to someone who hasn't felt it but I would correlate it to having an extreme feeling of a caffeine buzz. I actually feel my entire upper body tremor internally for a period of time and then as mysterious as it appears it just goes away. There is really no set schedule on when it comes and goes other than at night which I will get to next paragraph. It thus far comes and goes randomly but appears to be coming on more frequently as of recent. The odd thing is that if my wife touches my arms or stomach or chest, etc., she cannot feel a tremor type sensation, I only feel it internally.
Having said that, at very minimal times will I actually notice a difficulty holding my hands stable if I try to hold them in a certain, unrelaxed position. For example - if I try to hold the phone to my head at just the right angle, sometimes my hands will tremble trying to hold it, but at other times, no problem at all. I only have the problem when I have the internal tremor but most of the time I have the inner tremor I still don
I can so relate. Iv got so many strange neurological issues going on that I think it's all in my head..lol..no seriously, mine are, lightheadedness, dizzy spells, eye focus, flight or fight feelings, brain zaps, brain waves, pressure feeling behind eyes and top of head..Ridgelike lumps on skull. Nd also the tremors inside the head and so.etimes body but mistly head. I'm sure I'm missing more symptoms. Been to my GP, ENT, DERMO, not really any answers except ETD. I'm at a loss of what to do..
I have been experiencing tremors for four years..just before waking and first few minutes its verging on seizure with my head feeling like its stuck in a vice..i recieved a whole heap of vaccines for work four years ago..im really suspect on this as the cause as i felt horrible all day everyday for 12 months afterwards and fine prior.
ive spent years taking every conceivable vitamin mineral remedy and find a couple of cups of chamomile tea before bed is .very relaxing..and sometimes stops it...i also find staying clear of any gluten helps i dont know why though..has anyone else ever had any jabs?
ive spent years taking every conceivable vitamin mineral remedy and find a couple of cups of chamomile tea before bed is .very relaxing..and sometimes stops it...i also find staying clear of any gluten helps i dont know why though..has anyone else ever had any jabs?
Wow - I am SO glad that I found this blog. I have felt so alone and helpless over the past six months.
I returned from Cambodia in March sicker than hell. Besides being careless with the water and what I ate over there, I also got bit by something that left a red circle around it. It all started with diarrhea then evolved to flu like symptoms, severe internal shaking / convulsions, profuse sweating, weakness and pins & needles in limbs, burning throughout body, extreme joint pain (like fire),major tachycardia (racing heart), and CONSTANT vibrating in my limbs.
I have spent thousands of dollars on Emergency room visits, top UCLA doctors who don't have a clue, and hundreds of tests including a spinal tap & MRI's. Nothing. The only thing the doctors saw was a high ANA (anti nuclear antibody) number and an excess of vitamin B6 in my body.
And every doctor has a different opinion:
Neurologist - this is "post viral neuropathy"
Rheumatologist - this is Fibromyalgia
Infectious Disease - "See a Neurologist"
Wellness Chiropractor - this is metals toxicity
Chinese Doctor - the virus is still in your body
I am currently on MANY vitamins, Propranolol for the tremors and tachycardia, amitryptaline for depression & nerve issues, and Gabapentin for the nerves. Nothing has eradicated the vibrations in my limbs, although some days are better than others. And some days I have just had enough and wonder where to go from here.
Thank you for listening. Any comments or suggestions would be appreciated.
I returned from Cambodia in March sicker than hell. Besides being careless with the water and what I ate over there, I also got bit by something that left a red circle around it. It all started with diarrhea then evolved to flu like symptoms, severe internal shaking / convulsions, profuse sweating, weakness and pins & needles in limbs, burning throughout body, extreme joint pain (like fire),major tachycardia (racing heart), and CONSTANT vibrating in my limbs.
I have spent thousands of dollars on Emergency room visits, top UCLA doctors who don't have a clue, and hundreds of tests including a spinal tap & MRI's. Nothing. The only thing the doctors saw was a high ANA (anti nuclear antibody) number and an excess of vitamin B6 in my body.
And every doctor has a different opinion:
Neurologist - this is "post viral neuropathy"
Rheumatologist - this is Fibromyalgia
Infectious Disease - "See a Neurologist"
Wellness Chiropractor - this is metals toxicity
Chinese Doctor - the virus is still in your body
I am currently on MANY vitamins, Propranolol for the tremors and tachycardia, amitryptaline for depression & nerve issues, and Gabapentin for the nerves. Nothing has eradicated the vibrations in my limbs, although some days are better than others. And some days I have just had enough and wonder where to go from here.
Thank you for listening. Any comments or suggestions would be appreciated.
1 Comments
Have you taken Ciprofloxacin for any illness before, during or after your travels? Look up fluouroquinolones. And how they affect the body. You could be "floxed"
hope this may help ... read all comments.
Latent Tetany Syndrome from magnesium deficiency.
http://www.easy-immune-health.com/fibro-causing-vibration-in-body.html
Latent Tetany Syndrome from magnesium deficiency.
http://www.easy-immune-health.com/fibro-causing-vibration-in-body.html
I feel like I have been reading my own story.
For about 9 years I had inner tremors in the core of my body, in my trunk that were so unexplainable, that I didn't even know how to describe them to anyone. But it felt like my insides were being shaken rapidly, minutely, and everything inside would feel sooo unstable, like something was going wrong. This is on top of a multitude of symptoms, many of which are neurological, which all started suddenly in 2006 and with a rapid escalation of symptoms. I had been basically limited to a recliner most of the the time. Any exertion, such as even trying to walk to the sidewalk in front of my house, could make everything so much worse. Even though no one will diagnose me with Lyme's disease, even though the results were suggestive, I do still entertain the possiblity as we were in a tic infested area without knowing it, and they were all over the dog, on the kids, etc.
One of the issues I discovered, which doctors did not believe me, is that I need massive doses of Methyl B12 every day. Usual dosage is 3 mcg/day. My dosing ended up being upwards of 30,000 mcg/day. I spent 8 of those years trying to convince doctors that I needed this. Finally I gave up, had my genome mapped by 23&me and had put my data through genetic genie for the methylating information. Long story short, found the smoking gun. I have a homozygous defect (which is the worst kind) that makes my body use up methyl B12 so rapidly, it necessitates massive supplementation every day.
A methyl B12 deficiency will cause all sorts of problems, including neurological. I had gone for long periods without it trying to convince the doctors, but because I absorbed B12 fine and standard testing revealed normal levels, they ignored the evidence I kept trying to present to them, evidence from the labs they themselves would order. Now, with this new evidence they couldn't ignore it any longer. So, for now, they know I need this and it helps to stabilize things a bit, but by itself it is not enough.
However, what has prompted me to add my experience to this discussion is that last year I stumbled across something that has changed almost everything, in hopes it may help others here.
What I stumbled onto was research that has been ongoing world wide, that suggests that aging and disease is at the most basic level caused by mitochondrial dysfunction. Mitochondria are the power plants of the cell. They normally produce ATP and ADP for power for the cells to use. Enough ADP and ATP help the nucleus to do its thing, for the of the parts of the cell to do their thing, and for them to communicate properly with the nucleus, and other cells. As we grow older, and/or due to other assults on the body, the mitochondria stop working properly and begin to degrade and we can no longer put out the ADP and ATP at the abundant levels we did when we were young.
One such research study was done at Harvard by Dr. Sinclair, who has been looking for the fountain of youth. What he discovered a few years ago was truly remarkable. He looked at the effect increasing something called NAD+ in mice would have on their cellular age.
This is being rather simplistic, but he took 2 year old mice, looked at the cellular age markers, then gave them a supplement that would increase the NAD+ by putting it their water. He then checked their cellular age markers a week later and they were now those of 6 month old mice.
In 2014 he was name one of Time's Top 100 people of the year in 2014 (I think it was) specifically for this research.
Out of that research has come a special form of Vitamin B3 called nicotinomide riboside, and a pharmaceutical company was formed to manufacture it. It is only available under the name of Niagen, and has been licensed to companies such as GNC, Live Cell Research, and a few others. You cannot get it that I know of outside of the brand name Niagen, which is even available on Amazon, which is where I first purchased it. Preliminary human studies show that it increases NAD+ in humans the same way NAD+ was increased in the mice.
I decided to try it. For me, since my symptoms were like having CFS, Fribo, and MS all rolled into one, the results were immediate. 10 minutes after taking the first capsule, I felt like someone had plugged me into a nulcear power plant. This is the first time I had felt this in 9-10 years. (And one of the other methylating defects interfers with my ability to produce ATP/ADP.)
As long as I take it regularly, my life is almost normal. I still need the massive does of methyl B12. But I notice that unless I don't take these two supplements, the inner tremors and feelings of instability, among many other things, are gone.
I hope this may help someone else out there.
For about 9 years I had inner tremors in the core of my body, in my trunk that were so unexplainable, that I didn't even know how to describe them to anyone. But it felt like my insides were being shaken rapidly, minutely, and everything inside would feel sooo unstable, like something was going wrong. This is on top of a multitude of symptoms, many of which are neurological, which all started suddenly in 2006 and with a rapid escalation of symptoms. I had been basically limited to a recliner most of the the time. Any exertion, such as even trying to walk to the sidewalk in front of my house, could make everything so much worse. Even though no one will diagnose me with Lyme's disease, even though the results were suggestive, I do still entertain the possiblity as we were in a tic infested area without knowing it, and they were all over the dog, on the kids, etc.
One of the issues I discovered, which doctors did not believe me, is that I need massive doses of Methyl B12 every day. Usual dosage is 3 mcg/day. My dosing ended up being upwards of 30,000 mcg/day. I spent 8 of those years trying to convince doctors that I needed this. Finally I gave up, had my genome mapped by 23&me and had put my data through genetic genie for the methylating information. Long story short, found the smoking gun. I have a homozygous defect (which is the worst kind) that makes my body use up methyl B12 so rapidly, it necessitates massive supplementation every day.
A methyl B12 deficiency will cause all sorts of problems, including neurological. I had gone for long periods without it trying to convince the doctors, but because I absorbed B12 fine and standard testing revealed normal levels, they ignored the evidence I kept trying to present to them, evidence from the labs they themselves would order. Now, with this new evidence they couldn't ignore it any longer. So, for now, they know I need this and it helps to stabilize things a bit, but by itself it is not enough.
However, what has prompted me to add my experience to this discussion is that last year I stumbled across something that has changed almost everything, in hopes it may help others here.
What I stumbled onto was research that has been ongoing world wide, that suggests that aging and disease is at the most basic level caused by mitochondrial dysfunction. Mitochondria are the power plants of the cell. They normally produce ATP and ADP for power for the cells to use. Enough ADP and ATP help the nucleus to do its thing, for the of the parts of the cell to do their thing, and for them to communicate properly with the nucleus, and other cells. As we grow older, and/or due to other assults on the body, the mitochondria stop working properly and begin to degrade and we can no longer put out the ADP and ATP at the abundant levels we did when we were young.
One such research study was done at Harvard by Dr. Sinclair, who has been looking for the fountain of youth. What he discovered a few years ago was truly remarkable. He looked at the effect increasing something called NAD+ in mice would have on their cellular age.
This is being rather simplistic, but he took 2 year old mice, looked at the cellular age markers, then gave them a supplement that would increase the NAD+ by putting it their water. He then checked their cellular age markers a week later and they were now those of 6 month old mice.
In 2014 he was name one of Time's Top 100 people of the year in 2014 (I think it was) specifically for this research.
Out of that research has come a special form of Vitamin B3 called nicotinomide riboside, and a pharmaceutical company was formed to manufacture it. It is only available under the name of Niagen, and has been licensed to companies such as GNC, Live Cell Research, and a few others. You cannot get it that I know of outside of the brand name Niagen, which is even available on Amazon, which is where I first purchased it. Preliminary human studies show that it increases NAD+ in humans the same way NAD+ was increased in the mice.
I decided to try it. For me, since my symptoms were like having CFS, Fribo, and MS all rolled into one, the results were immediate. 10 minutes after taking the first capsule, I felt like someone had plugged me into a nulcear power plant. This is the first time I had felt this in 9-10 years. (And one of the other methylating defects interfers with my ability to produce ATP/ADP.)
As long as I take it regularly, my life is almost normal. I still need the massive does of methyl B12. But I notice that unless I don't take these two supplements, the inner tremors and feelings of instability, among many other things, are gone.
I hope this may help someone else out there.
1 Comments
theresaj I would like to know if you are still using the Niagen and the Methyl B12 has it been affective. I have the exact same symptoms as the ones you described.
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