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ALSBurger

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Nonya
Phew - where to begin? I am 38 years old. Never really sowed my wild oats. Moved to an extremely social city, and had some fun for awhile. Just one or two nights a week on weekends. Got involved in Adderall (only 5mg extended release) with heavy drinking one night a week. For about 24 months I did ecstasy about once every couple months. Grand total of roughly 40 times. I have not done ecstasy now for over a year and a half though. Never had any real problems with it even when I stopped. Just got bored of it. Adderall 5mg however once every weekend for the last 2 years. Both are forms of amphetamine, though 5mg is a dose that even little kids take on a *daily* basis. I was doing it once a week to offset the drowsiness from alcohol. Still... its an amphetamine.

Healthy lifestyle otherwise. Very healthy eating. Gym all the time. Slim and fit.

Took a trip to Thailand to see friends and had the worst luck possible. One evening met a girl, was with her sexually, and the next day paranoia got me asking if we could go get tested. We did and she came back positive for HIV.

I was immediately put on the most toxic medications known to mankind (that also keep people with HIV alive). AZT and Kaletra. Double anti-retroviral thearpy as post exposure prophylaxis. 10 pills a day for 28 days, to abort any HIV infection I may get.

It worked. Thank God. But the medications screwed me up royally.

At this same time coincidentally I had decided to get the Hepatitis B vaccine and just finished my 3rd shot. A vaccine well known for causing problems, potentially MS ...

My health was perfect before all of this. But after the HIV meds i would have constant bouts of extreme fatigue, and signs of blood disorders (exactly what the meds are known for). It would come and go, and I was in the doctor constantly, getting retested for HIV and being told that the toxic drugs just did a number on me. I began developing major problems in the hot weather - bodywide tingling and prickling. Fatigue and malaise. If I was even slightly tired it would come on with a vengeance.

I am now exactly 6 months post medications, and recently lost a lot of weight. Found a swollen gland in my groin with no doctor explanation. And have developed muscle twitching and daily migraines that are concerning me. I was in the grocery store the other day and the top of my left foot felt like pins and needles, followed by about a half hour of that "coming back awake" coolness.

Much larger muscle groups are spasming out of control now. The back arm muscle I have flops back and forth as it spasms. The larger muscle between my finger and thumb, causing my finger to literally bend towards my thumb, sometimes holding there for a second or two before releasing. Weird locations I have *never* had any twitching like this before in my life. Back of my calves - tiny little spasms. Elbows. the side of my head above my ear while im trying to sleep.

This has been going on for a solid 2 weeks along with the migraines.

I don't have any weakness that I am aware of. I definitely have lsot a lot of weight but I also dropped caffeine and sugar completely from my diet. I was on coQ10 for a couple months and dropped that this month as well as resveratrol and PQQ .... also stopped ALA which I was taking. Im down to just a multivitamin and vitamin C.

I dont know if any of the first 3 paragraphs is relevant. But my health hasn't been the same since the HIV meds and Hep B Vaccine. I dont know if any of this relates to the Adderall .... but the twitching adderall can bring usually only lasts for a day after, and its tiny, irrelevant stuff. Nothing like this.

The drugs I took cause peripheral neuropathy and i had it very bad while I was taking them. And AZT is known for causing things like lymphoma and MS ... But doctors say my dose was too short to do any harm.

In any case I have an appointment scheduled with a neurologist but he cant see me until the 17th (2.5 weeks from now). Guess this will give me time to see how it changes, or doesnt change.
 
Looks like I cant edit my post due to forum rules.

I wanted to add - any input any of you have is welcome. Even if it has nothing to do with ALS. I actually run a health site similar to this and i know how exhausting it is when the "worried well" post with crazy random symptoms.

I value communities like this though because many different minds with knowledge in them can speak up and say what they know. So if you have any suggestions or "it sounds like" ... im open to whatever.

I have no muscle weakness that I am aware of, but the twitching just began. No dizzyness. I do sometimes flop over my own foot while walking but that may be because im retarded. I definitely have lost a ton of size muscle-wise lately, but again i completely dropped ALL SUGAR, and lost a ton of weight quickly. Who knows.
 
I don't mean to be rude, but how in the world did this story end you up at our forum? That all sound like a tough row to ho for sure, but I'm not seeing how it would relate to MNDs.
 
Thank you for your response. And that's why I am here. If after reading all of that you simply shake your head and say "why are you here?" then I have my answer.

I appreciate you taking the time to read it. Im a thorough individual and always at least "ask" ... so that's what this was. :)
 
I will second what Beky said. I hope they get you sorted out. That gland should be checked out since you report those meds can cause lymphoma.

And stop the non prescription speed, hon. If you are suffering from fatigue, you may well find a doctor will treat it for you.

As Beky said, I do t think ALS needs to even be on the radar!
 
Thanks again.

Im just another person who suddenly has body-wide twitching, vibrating, etc ... you've heard the stories 100 times, and im learning slowly what differentiates it from ALS.

I can't see a neurologist until the 17th (2.5 weeks) but I suspect I will be diagnosed with BFS at that time. Or at the very least, i'll have a better idea how this thing is progressing.

I don't enjoy sitting here with my arm and fingers twitching literally every 10 minutes for 60 seconds. And laying down to hear my eardrum vibrate like there's a moth in it ... when I was perfectly fine a week ago, going back 38 years.

So there's some natural freakout mode going on here, even if its just BFS. I dont like the idea that I have just embarked on anything degenerative, period.
 
ALSBURGER. I'd wager in your case it's not going to be BFS, but something to do from your cocktail. BFS pretty much has no known cause. Your body has something going on, just not something we here believe to be ALS. Please continue with them til you find answers.
 
Go and get good advice from a doctor. I don't think you can say that you have a relatively healthy lifestyle and mention using drugs and heavy drinking, even on the same page. You have a healthy lifestyle or not. It's not bad luck getting HIV from someone you have picked up in Thailand!

As the others have said, it doesn't sound like ALS

Oh and please can you provide the papers that site the connection between the Hepatitis b vaccine and MS. That's a provocative statement that needs evidence. I work with MS patients and would be very interested in reading the evidence you have.
 
I am not going to comment on this one for sure.
 
In recent years, concerns have been raised that the vaccine may trigger serious autoimmune diseases, especially multiple sclerosis

These fears were fueled in the 1990s when about 200 people in France developed MS shortly after receiving the hepatitis B vaccine.

In February 2001, the results of a long-term study of hepatitis B vaccine and MS in nurses were published in the New England Journal of Medicine.

This study, by researchers at Harvard School of Public Health, found no link between the two. However, some of the same researchers now believe there is a link.

In the latest study Dr Miguel Hernàn and colleagues looked at people registered with a GP in the UK who had been diagnosed with MS between 1993 and 2000.

When they looked at hepatitis B immunisation patterns among these 163 MS patients and 1,604 'control' patients without MS from the same GP database, they found a link between the vaccine and MS.

Dr Hernàn said: "We estimated that immunisation against hepatitis B was associated with a three-fold increase in the incidence of MS within three years following vaccination."

He said more research would be needed to find out why this might be.

Caution

"It is also important to stress that 93% of the MS cases in our study had not been vaccinated," he said.

Thus, for some, the small risk of MS posed by immunisation would be far outweighed by the protection against potentially fatal liver problems, he said.

In an accompanying editorial, Dr Robert Naismith and Dr Anne Cross from Washington University said: "This article should be viewed as another piece of the puzzle of MS causation.
They said the findings were not strong enough to suggest that current immunisation policy should be changed in any way.
A spokeswoman from the British Liver Trust said the findings were interesting but the suggested link should be viewed with some caution.
"Given that many vaccinations for hepatitis B are given in a workplace setting, it is possible that a proportion of vaccinations do not figure in the control group's records.

"We don't know whether that has been taken account of in the research.

"If it hasn't then the association may be much less than the three fold increase suggested here," she said.

A spokesman for the Multiple Sclerosis Society said: "We need to study these findings in the context of other recent research which has shown no link between the vaccination and MS.

"Even on this evidence, however, it is obvious that the serious risks of hepatitis B vastly outweigh any very small possible risk from vaccination."

The MS Trust agreed, saying: "On the basis of this study, one wouldn't want policy as regards to vaccine, to be changed, particularly with such a lethal disease."


Neurology

Multiple Sclerosis Society

British Liver Trust

MS Trust

The BBC is not responsible for the content of external internet sites
 
Thank you Scottslassie.

All it takes is a little bit of research (about 4 seconds of it) via Google to find the information on the association between Hep B vaccine and MS. Im actually surprised you've never even heard of it, given you work with MS patients....

The court in france even ruled it *was* due to the vaccine.

Apparently the Glaxo vaccine has a significantly higher rate than the Merck one.

My twitching has given way to extreme hot and cold sensitivity in my hands and feet. So I am looking at Reynauds (which my mother had).

As for living healthy, I appreciate your judgmental comments, but you fail to comprehend what I meant. Just because I took a trip to Thailand and met a girl (pretty normal behavior) doesn't mean I didn't eat right, exercise daily, sleep well, and take very good care of myself.

Just because I went out on a Friday night and mistreated my body doesn't mean 95% of my lifestyle wasn't healthy. I know these exceptions are important, and that is why they will be stopped completely. But I dare say my daily lifestyle would compare to or surpass most peoples (including your own) in the quality of my diet and lifestyle the remaining 98% of the week. The only exceptions were the 6 hours where I took a dose of adderall smaller than a child's daily dose.
 
Definitely going out with friends and having a good time and even a few drinks doesn't mean you don't take care of yourself.

But, if you are drinking so much on those weekend outings that you need to add speed to the mix, that's a potential problem. Unprotected sex in today's world with HIV, HEP and STDs is just irresponsible. Again, not something I'm sure thousands and thousands haven't done.

You were on toxic meds for a month you said. You're describing symptoms that have not sounded ALS related to even ONE person here. No one is saying there can't be something wrong.

What symptom are you having that even makes you think you might have ALS? Sensation issues can be a whole host of things. Neuropathies are the most common, I believe, vitamin deficiencies fit in there somewhere, too, such as B-12. ALS affects different nerves. If your hands change color, you may well be right with the Reynauds. Find out.

You were lucky. That one foolish night could have meant your life. I'm certainly not condemning or judging, but don't be surprised if people wonder about their definition of healthy lifestyle verses yours. Weekend drinking in excess can be just as harmful to the body over the long term. I've seen alcohol poisoning. It's not pretty.

Personally, I'd insist on a doctor making sure that gland isn't a problem. But, I've already said that, I think. Good luck to you.
 
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