New To This.. Need To Talk..

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New To This.. Need To Talk..

Postby IUKid613 on December 8th, 2012, 12:25 pm

Hello everyone, my name is Clay. I am 19 years old and a college student at IU. I have always been active, and star basketball player for my high school, but once i got to college everything started happening. I am only about four months into this so im still always anxious and looking for answers. For about two months I suffered panic attacks from the fear of A**. I have never had anxiety and it depresses me that i have done this to myself.. But, it all started about 4 months ago when I got a viral infection, nothing serious but never knew what it was. I got the flew shot and for weeks I Didn't feel like myself. I was constantly tired and weak and I was so worried about what was going on. Then, I got my first twitch, on my eye. It was weird but I didn't fret over it. Well then i started twitching/spasming in my arms. Then i began to panic at night and they would get worse and worse. No i have body-wide muscle twitching. However, if i stay active throughout the day (Which i try to do always, now) i don't even notice twitching or spasming. It is only at rest when I really notice the "hot spots" in my legs. It is not constant and hasn't seemed to gotten worse, some days better than others, but it is really irritating and I can never sleep well because of it. I just want to know if anyone else twitches way more at night when resting than during times when your active. And am i Okay?

Here are the symptoms i have had:
Body wide twitching/spasms (Feet to neck) (Painless)(Way more at rest Than Not, Can ignore throughout the day)
Hand Tremors, and Jaw Tremors (Only when im looking for it do i notice it though)
Perceived weakness in legs and arms (I still work out every few days with no troubles)
Body aches (Sometimes)
Freezing headaches/Tingles
Body is tingling somewhere most of the time. Cant sit down for long before i get that feeling where my legs are falling asleep.
I get this weird numb feeling in my limbs, almost like they are detached, when i go to move them however, they are fine.
Jerks, sometimes enough to move a whole arm or leg (Resting or not)
Tingling in the mouth(No speech issues or swallowing)
Carpel Tunnel almost, my hands tickle a lot when i make a fist(Gotten better)
Vibrations throughout body, from like chest to arms(Like the bed is shaking but i guess its me)
Im sure there are several others but im just forgetting.

I don't believe i have gotten worse, and I have not had real weakness, but so many of these symptoms annoy me. Especially the mouth tingle, my tounge just feels uncomfortable as well. I just want to hear what you guys think. This site is great and has helped me a lot. Hope to hear back from you guys soon,

Thanks
-Clay
(3-4 Months In)
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Re: New To This.. Need To Talk..

Postby twitchinjohnny on December 8th, 2012, 1:24 pm

Hello, Clay...

First of all, the possibilities of developing ALS at your age are pretty much non-existent.

Just about everyone on this board has, or has had panic and overwhelming anxiety related to muscle twitches and the fear of ALS. Anxiety and obsessive worrying will actually make your twitching and other symptoms worse, including the symptom of "perceived" weakness. From what you say in your post, you're really not weak at all. Outside of all of the annoying neurological goings-on, it sounds like you're really strong and healthy. The symptoms you describe sound like BFS. I've endured just about everything you've described at one point or another. And, yes.... the twitching is generally much more prevalent and noticeable when one is at rest. Like, lying in bed. I am often woken-up in the middle of the night and in the morning by twitches that I normally don't get during the course of the day.

If you have any doubts about the side-effects of your recent flu vaccination, see your doctor. In the mean time, relax...... I know, easier said than done. Don't waste your time and energy testing your strength and scrutinizing your physique. Avoid googling your symptoms, too! These practices only fan the flames of insanity. You don't have ALS. Ask anyone on this board and they'll tell you that the anxiety and head-trips are probably the worst part of this whole BFS thing.

Good luck!

John


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Re: New To This.. Need To Talk..

Postby PetrifiedGuy33 on December 9th, 2012, 7:40 pm

IUKid613 wrote:Hello everyone, my name is Clay. I am 19 years old and a college student at IU. I have always been active, and star basketball player for my high school, but once i got to college everything started happening. I am only about four months into this so im still always anxious and looking for answers. For about two months I suffered panic attacks from the fear of A**. I have never had anxiety and it depresses me that i have done this to myself.. But, it all started about 4 months ago when I got a viral infection, nothing serious but never knew what it was. I got the flew shot and for weeks I Didn't feel like myself. I was constantly tired and weak and I was so worried about what was going on. Then, I got my first twitch, on my eye. It was weird but I didn't fret over it. Well then i started twitching/spasming in my arms. Then i began to panic at night and they would get worse and worse. No i have body-wide muscle twitching. However, if i stay active throughout the day (Which i try to do always, now) i don't even notice twitching or spasming. It is only at rest when I really notice the "hot spots" in my legs. It is not constant and hasn't seemed to gotten worse, some days better than others, but it is really irritating and I can never sleep well because of it. I just want to know if anyone else twitches way more at night when resting than during times when your active. And am i Okay?

Here are the symptoms i have had:
Body wide twitching/spasms (Feet to neck) (Painless)(Way more at rest Than Not, Can ignore throughout the day)
Hand Tremors, and Jaw Tremors (Only when im looking for it do i notice it though)
Perceived weakness in legs and arms (I still work out every few days with no troubles)
Body aches (Sometimes)
Freezing headaches/Tingles
Body is tingling somewhere most of the time. Cant sit down for long before i get that feeling where my legs are falling asleep.
I get this weird numb feeling in my limbs, almost like they are detached, when i go to move them however, they are fine.
Jerks, sometimes enough to move a whole arm or leg (Resting or not)
Tingling in the mouth(No speech issues or swallowing)
Carpel Tunnel almost, my hands tickle a lot when i make a fist(Gotten better)
Vibrations throughout body, from like chest to arms(Like the bed is shaking but i guess its me)
Im sure there are several others but im just forgetting.

I don't believe i have gotten worse, and I have not had real weakness, but so many of these symptoms annoy me. Especially the mouth tingle, my tounge just feels uncomfortable as well. I just want to hear what you guys think. This site is great and has helped me a lot. Hope to hear back from you guys soon,

Thanks
-Clay
(3-4 Months In)


most people on this baord have exactly the same symtoms my friend and to the best of my knowledge, none of them went on to get the disease you fear - also as has been said, at your age it just doesn't happen, i started twitching around the same age as you, it didn't bother me at all really, it came and went and came and went and i only freaked out when i googled about you know what - that of course made all the twitching and anxiety a million times worse, the first few months are usually the most anxious, then you'll realise it's nothing serious and get on with your life - 99% of the time the twitches don't bother me but I too sometimes suffer from anxiety and am going through a bad spell at the moment, i believe that is what we have to get under control and then hopefully the symtoms will ease up a bit
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Re: New To This.. Need To Talk..

Postby Ghayes420 on December 9th, 2012, 8:59 pm

Hi Clay and welcome to the forum.

I concur with the above two responses.

As mentioend by John and PG33 before, ALS at your age is extremely unlikely. This really only happens in familial cases at your age. I assume you would have mentioned if one of your parents passed on from motor neuron disease.

I am not a doctor but along with the above mentioned tidbit, three things strike me.

1.) BFS/CFS/BCFS seems to have a slight propensity toward athletes and former athletes or active folks. You see this here alot and this was also told to me by my MND specialist.
2.) Many people have reported as having these mix of symptoms after receiving either a.) the flu vaccine b.) a viral infection of some sort.
3.) Your symptoms match a large portion of folks here. I have seven on your list myself.

If these symptoms bother you to some degree, I suggest you see a trained neurologist to have him give you a good look over. I will save you the drama and tell you that he most likely will not be impressed. He may or may not want to do some bloodwork and diagnostic testing, and after that is done and all is proven normal, then you can start to work on the biggest hurdle, the anxiety caused by the sx.

As John and PG33 said, don't google anything, research anything, and put your trust into the doctor, should you choose that route.

Welcome, your case and age gives me no worries for you what-so-ever.

Cheers,
Greg
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Re: New To This.. Need To Talk..

Postby Lasszucken on December 10th, 2012, 7:12 am

Welcome Clay.

Your symptoms look familiar to mine, so I would exactly write what twitchingjonny and Greg wrote. And like Greg wrote: Be warned, the neuroligist will not be impressed, mine werent, they didn't bother about the twitches at all.

Cant sit down for long before i get that feeling where my legs are falling asleep

I have this strange feeling too, but I dont really know how to exactly describe it, i would say its more like static electricity that raises the hair on my calves, but i remember it was like the beginning of legs are falling asleep, but they never did..
This feeling is driving me nuts sometimes, its fine when moving around, but as soon i sit or lay down it starts after a few seconds. But fortunately its not 24h a day, i even have days without it.
Im just curious if we maybe have the same feeling...

Greetings,
Mattias
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Re: New To This.. Need To Talk..

Postby SecretAgentMan on December 10th, 2012, 11:18 am

Thimerosal, which is 49 percent mercury by volume, is a widely used vaccine preservative. Mercury is a well known neurotoxin. The cases of people having bad reactions to vaccinations is mostly ignored by the media and our society seems to go on the attack for people that refuse to vaccinate themselves or their children. It is possilble you may be having a reaction to the vaccine based on the timeline you described. I realize Dayton, OH may be like a 2.5 to 3 hour drive for you but I have a doc here who is amazing at figuring out and treating people with problems like this.
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
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Re: New To This.. Need To Talk..

Postby IUKid613 on December 11th, 2012, 4:12 pm

Wow thanks everyone for your replies. These last days i have been working really hard on keeping my anxiety down. And to be honest, im feeling so much better. Ya i twitch but i feel like i have gotten better, or atleast not any worse. I apppreciate all of you reasurring me. It has helped so much. I guess welcome me to the bfs gang? Thanks a lot
-clay
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Re: New To This.. Need To Talk..

Postby IUKid613 on December 11th, 2012, 4:25 pm

Also, so you guys know others who think the flu vac. gave them bfs? And does anyone get the weird numb feeling? I only have it when i wake up. My legs and arms either feel detached or super weak an tingly. Its so hard to explain. But they never are weak. I can move them and get up just fine but they just feel different for awhile. Is it how i sleep? Or just one of those things?
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Re: New To This.. Need To Talk..

Postby Yuliasir on December 12th, 2012, 12:10 am

Hi IUKid,
in fact for many of us BFS had started with a viral infection or vaccine, but sorry, I strongly doubt that minorest amount of mertyolate (timerosal) (which by the way was taken out from USA and Western Europe made vaccines 20 years ago, in 1990s) can harm your neurons up to any degree. If you are American and eat a lot of canned tuna, your chances to eat mercury are much higher in fact :). It should be rather related to the action of virus or immune system than poisoning.

many of us also complain for morning weakness, shaking etc. Looks like shaking is a hormonal effect (waking up causes severl hormonal spikes), and feeling of alteration might be due to specific way of brain operation. When we sleep (in deep phase), our muscle tonus is suppressed, that is why people have sometimes so called sleep paralysis - part of the brain is still in deep sleep phase, part is waked up. Maybe you have a kind of that condition, ususally it does not last for long and soon body image feeling is back. Or it might be circulatory issue, especially if you are prone to hypermobility and can place your limbs in a veird position like I do :))) Our fellows often complain for numb and tingling limbs during the night (me too).
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Re: New To This.. Need To Talk..

Postby SecretAgentMan on December 12th, 2012, 11:36 am

Mercury has a cumulative affect on the body because your body cannot get rid of it. Our natural systems of detoxification require we sweat or urinate the toxins out, which requires them to be water soluble. Mercury by itself is a heavy metal and cannot be processed by the liver or sweated out through the skin. When your body cannot get rid of a toxin it will store it and this will allow the toxin to continually take a toll on your nervous system and body. It completely boggles my mind as to why our medical community recognizes the hazzard that mercury poses but yet still allows mercury to be directly injected into our blood streams through vaccinations or put into our mouths by way of silver fillings. Meanwhile the EPA recommends you hire a hazmat team to clean up your home if you have a CFL lightbulb break (which contain Mercury). I personally do not let society norms dictate to me if something is acceptable or not. I like to think for myself and I got some alarm bells and red flags when I learned that most vaccinations contained high levels of mercury. It simply does not compute.

There are supplements on the market that you can take that will help your body to get rid of mercury. The supplemens contain compounds that are safe for you to ingest and they bond with mercury allowing it to become water soluble, so your body can get rid of it naturally. Detox supplements are hard on your body and you need to drink lots of water to keep the liver and kidneys flushed. Depending on how long your body has been storing the mercury or other toxins can determine how deep it is in your tissues and how difficult it will be for your body to remove it and make repair.
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
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Re: New To This.. Need To Talk..

Postby mwagner on December 12th, 2012, 11:45 am

The flu shot is the only remaining vaccine to contain thimerosal.

Trust me, I know, because I have to search my whole city for thimerosal-free flu vaccines for my children (who are too old now to be given the thimerosal-free flu shots my pediatrician gives children under 3). So, yes - the US has rid all vaccines of thimerosal, except for the flu shot. I find that Passport Health, a travel clinic here, almost always has thimerosal free flu vaccines available. But, the vast majority of doctors offices, pharmacies, grocery stores, etc. that offer the flu shot offer the basic shot, which contains thimerosal.

It's important that people are aware of this, if they are trying to reduce mercury either for themselves or their children.

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Re: New To This.. Need To Talk..

Postby mwagner on December 12th, 2012, 12:03 pm

PS: Heavy metal toxicity can be tested with a hair strand test. You can google this, if you're interested. I thought with a mouthful of amalgam fillings and all the vaccines I have had, I would be burdened with mercury. However, it is Lead that I showed high levels of, and not mercury.

But, either way - if you have any sort of neurological issue, like we have, I would steer clear of mercury, which is known to be a neurotoxin. I would watch for thimerosal, and I would reduce my consumption of fish with lots of mercury in it (like tuna, for example). And, I would carefully and slowly get fillings out of your mouth as well (but you have to be careful there -- make sure your dentist uses a rubber dam, because you can ingest the mercury otherwise).

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Re: New To This.. Need To Talk..

Postby Ghayes420 on December 12th, 2012, 12:13 pm

mwagner wrote: You can google this, if you're interested.

Mitra
:shock:

Shame on you Mitra. Shame on you!

That being said, did insurance cover this test? And if so, did you have to ask your doctor for this?

I often wonder if my metal levels are off as I have not had them tested.
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Re: New To This.. Need To Talk..

Postby mwagner on December 12th, 2012, 12:48 pm

I know, I hate even writing the word "google". No, I went through a holistic doctor to get this test, but it's available on the internet. Insurance didn't cover it - and it's about $100. From what I understand, what shows up in your hair (versus urine or blood), is what is embedded in your tissues. So, I have a lot of lead in my tissues. I would have to go through the whole chelation process (either through supplements or if I wanted to do this seriously, I would go to a doctor who would do it through infusions of EDTA or DMSA) to get the lead out of my tissues. What shows up in your blood or urine is what is currently in your system. I did a urine test as a follow up and I don't have high levels of lead systemically right now (this was to rule out that I was getting some constant source of lead, for example through my tap water or something like that). Basically, I probably had some high exposure to lead when I was younger, that remains in my tissues to date. I was in the 90th percentile, which is a little scary.

I have wanted to go through chelation but have to get rid of any mercury fillings in my body, because the chelation process could extract the mercury from my fillings and pull it into my kidneys or liver, which would be a huge amount of mercury for my body to deal with. And, I'm only trying to chelate lead, since the mercury isn't the issue. Bottom line, I have a filling that is so close to the nerve (my only remaining filling) of my tooth that it would require a root canal. And, there are health risks with root canals (I'd say "google" that, but I need to stop telling people to google things!), so I'm in a bad spot with all of this.

It doesn't hurt at all to find out if you have heavy metal toxicity. And, it's not expensive, and it may reveal things you never knew. Plus, having too much lead in your body, for example, not only can have neurological consequences, but can also lead to other diseases (the big C) in the future.

Huge, long explanation - and I totally stole this thread! Sorry!

Mitra
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Re: New To This.. Need To Talk..

Postby SecretAgentMan on December 12th, 2012, 2:12 pm

Thanks for the additional info Mitra.

Another example of how compounds can combine in the body and change the way they affect our health is Aluminum Flouride (AlF3). Aluminum cannot penetrate the blood brain barrier on its own, which is good because Al in the brain has been linked to Alzheimers. Unfortunately since they put Flouride in so many municiple drinking supplies it is prevalent in the American diet. Saddly Aluminum combines with Flouride to make AlF3, which is not filtered or protected against by the blood brain barrier. AlF3 is also tied with Alzheimers and dementia...

just one of many sources: http://www.actionpa.org/fluoride/aluminum.html

It has become painfully apparent to me that the organizations and institutions that were put in place to protect the public from harmful exposure to toxins in our food, water, medicine, air and other environmental factors are ineffective and incapable of performing their mission. What is even more scary is that our medical field is right on board and along for the ride in their ignorance. It doesn't take a rocket scientist to look at the evidence that is available and put two and two together yet the mainstream just keeps humming along and staying the course. Do your own research and make up your own mind. I just want people to be aware.
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
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Re: New To This.. Need To Talk..

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