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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 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.
My inner tremor started 6 weeks after toe surgery. It took 5 years to get rid of it after doctors all would tell me it was anxiety. If it was anxiety, how come Xanax made it worse? I got better on my own when I started trying to eat healthier, stayed off any meds and was never properly diagnosed. I do remember that I had a metal pin that had to stay in my foot for six weeks, and bored at home, I would prop my foot next to my computer and surf the net. I often wonder if I had electric activity in my body from that. Five years I suffered with it. So glad it is gone now as sometimes I would be so pale that I though I would not pull through. My inner tremo was mostly upper body, and during sleep of any kind including naps during the day. If I changed positions at night, the tremor felt like it was shifting to that side. It was strange and I am so glad it is gone. No thanks to one single doctor.
hi again. maybe i have not well explained my hypothesis. i feel tremors in all my body at night because of the muscle relaxing and i feel it less or nothing when i stand (because of the muscle tone). moreover, i feel this tremors only when i can ear some kind of low noise that is produced by the hi fi car of the guys of my neighborhood. really. otherwise i feel very well. when i ear that noise and when i vibrate i have some pain and general discomfort, burnig legs, dizzines, chills and i'm very cold also now that hare is summer! there are a big scientific evidence that vibrations blame all these syntomes. in fact, there are infrasounds weapon. So, i can give you my phone number or my email but you can check your home and neighborhood to find the presence of that vibrations. i hope this can help you.
hi, i have all syntoms you have described. i think that all our syntoms are the results of vibrations. i have have many cars near my home and many are tuning speakers ( more powerful ) and they produce low frequency sounds... vibrations. we all feel these not natural frequences. i'm italian, am a dr and i'm studyng about this problem. it's not ansiety caused but cause ansiety. i'm sure that our problem is caused by infrasound. how many of you have some source of low frequencies? disco, hi fi car? home theather? something similar... sorry for my english and good luck to everyone :)
hi! I have exactly the same things. I understand how you feel it is simply terrible and makes you exhausted. I am just wondering how are you feeling now and if you could give some advise what to do in this case to make it better.
1 Comments
I have had this for three years. Stress is a trigger so calm down it is not life threatening. I have been to Mayo clinic and exhausted every test. This is like high blood pressure. Some people have it some don't. I am taking clonazepam and sleep like a baby. I have been on every diet and supplement but the issue gets better and worse all the time so you get tons of fals identifiers. Stress is what started my issue. So it is going to take a mind set that this is not serious so your body can heal. When you wake and stress, smile. Your body reacts to muscle position in your face and it will falsely make you feel better. Read the book Blink. It really works. Clonazepam will keep you sleeping and will take the tingling away. You still tremor but can easily go back to sleep. I take 4 mg at 8 pm. Have to work up very slow .5 mg at a time for a week each increase or it will kick your *** the next day. Very few side effects. Little groggy in the morn.
Stop worrying!
Stop worrying!
It's Lyme disease and its nefarious co-infections. Period. Lyme disease is also known as "The Great Imposter." It can mimic every single autoimmune disease, including MS and PD and go undetected from the majority our modern technology because it's an intracellular survivor and it's malevolent like that.
I have all the same symptoms (and some) aforementioned above and only acquired them after I was bitten by an infectious tick. Many people don't remember being bitten, but guess what, you were. So, now you have to eradicate it from your body and/or, put it in remission. I recently started Stephen Buhner's Lyme protocol, in which I provided a link below. It's going to take time, but I'll get there. I know it.
Most of the symptoms people are describing are post-Lyme-disease-symptoms. The majority of people here are dealing with Bartonella and Babesia, which are Lyme co-infections. I suggest you take a look at this website... if you want to live: http://buhnerhealinglyme.com/
I have all the same symptoms (and some) aforementioned above and only acquired them after I was bitten by an infectious tick. Many people don't remember being bitten, but guess what, you were. So, now you have to eradicate it from your body and/or, put it in remission. I recently started Stephen Buhner's Lyme protocol, in which I provided a link below. It's going to take time, but I'll get there. I know it.
Most of the symptoms people are describing are post-Lyme-disease-symptoms. The majority of people here are dealing with Bartonella and Babesia, which are Lyme co-infections. I suggest you take a look at this website... if you want to live: http://buhnerhealinglyme.com/
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