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fred_dakota

Member
Joined
Apr 22, 2009
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Reason
Learn about ALS
Country
US
State
ND
City
Fargo
Hello All,

My name is Fred. I am 28 and am from Fargo ND.

I apologize in advance for the length of this post, but since I feel it may all be related I think it's important to not disclude anything:

I've seen a couple people on this board have mentioned that using the street drug Ecstasy may have caused them to develop ALS-like symptoms.

I believe I may be one of those people.

On February 28th, at a friends birthday party I was given a small, white tablet of Ecstasy called a White Dolphin. This was the third time I've done X in 10 years.

The pill did little more than keep me up a couple extra hours and I had no adverse effects from it at the time.

Two weeks later, beginning March 15th, after eating breakfast I had an intense chest pain, coupled with near-fainting and anxiety that forced me off the job and into the ER. I was given a EKG, a chest X-Ray and several blood tests and discharged as healthy. The listed my admission for "Chest Pains-Unknown Causes"

My work allowed me to take a few days off and by that Thurs (Mar 19th) I still didn't feel any better. I had a persistant dizzy-lightheadedness that didn't quite feel real, almost like I was a bit detatched from reality.

I know that sounds strange, but that's the only way I can describe it.

I think now that dizzy, disconnected light-headedness may have been a delayed affect of the drug.

I returned to the ER. They did another EKG, a CT scan, more blood tests and a Stress Test. Everything came back negative. The Doctor who treated me was very nice and said it may be due to stress (I recently had a friend pass away due to a drug overdose) but it was his opinion that I was healthy and was not in any real danger from whatever was causing these symptoms.

Two weeks passed. I had a couple dentist appointments, one where they extracted a tooth using local anesthetic. We had the Great Flood that week. But during this time, between rest and work, I felt like my old self again.

During the two weeks where I felt "back to normal" I noticed my left hand wasn't as coordinated as usual, pressing buttons, picking up things, etc. Just little things but enough to notice.

On Friday, March 3rd, after a month of no fast food or candy (I gave them up for Lent) I went to Hardee's (Carl's Jr. for some of you) and got a Western Bacon Burger. Shortly after eating the meal the dizzy, lightheadedness, disconnected feeling came back and persisted for the next few days.

I went out drinking Friday and Saturday night, probably not the smartest move due to my dizzyness, but I am from Fargo.

Then Sunday (Mar 5th) I awoke with a slightly numb left leg/foot and left arm/hand. Not the whole hand. Mostly in the pinky and ring finger. This threw my gait off. When I walked I felt as if I was pulling to the left.

After a couple days with no change I went to a Walk-In Clinic and the Doctor there, reviewing my currrent medical history of chest pains with no known causes, believed it was all in my head and made me an appointment with a counselor.

I hoped it was all in my head but reading symptoms online I started to worry that I may have had a stroke or a mini-stroke, so before I went home for Easter that weekend I went to the ER again. The doctor did another CT Scan and blood tests. Said I did not have a stroke and said hopefully whatever was causing my symptoms would go away on it's own.

After Easter it seemed the numbness had gone away, but the left-favoring gait remained. By trying to force myself to walk straight, my big toe on my right foot has gone numb.

My left leg and arm slowly became weaker and weaker over the course of that week (Apr 13th-17th). My left hand had also lost some coordination. This was very apparent when I would wash my hands. It just felt like the left one was not reacting correctly or... I don't know.. it just didn't feel normal.

Then about the middle of the week my limbs started to feel hyperflexic; feeling like they were too light and/or rubbery. I also got this feeling in my right arm and leg, along with some slight weakness. That was frightening because that meant it was spreading.


The last straw came when I noticed spasticity in my chest. When I would wash my hands my the left and right of my chest would dance up and down in unison with my arms, like you see in those body builders with over-developed pecs who can do it on impulse.

My voice has also deteriorated. I feel like somthing is in my throat or my throat is tighter than normal. I also get hoarse easily when I talk at length. I can still sing though, although my voice seems more shakey.

So that Friday (Apr 17th) I set up a Doctors Appointment with an Internist. I went to see him this Monday (Apr 20th). And detailed my symptoms, saying I feared it might be a neurological condition such as ALS.

(See, I had been to a Neurologist in 2004 about a tremor in my left hand. They said it my just be a non-progressive essential tremor as my MRI was normal and sent me on my way.)

He did a full exam. He didn't get a response from the Babinksi test on my feet, nor did he get a reflex from my arms. He set up a EMG/NCV test for Wed (Apr 29) with an MRI/MRA to follow.

I asked if a neurological disorder could spread this fast as it had only been a matter of weeks. He said it could.

He ran a battery of blood/urine tests. The only oddity that has come back so far was a CK Test that showed "slightly high seratonin" which could be indicative of a neurological or muscular problem.

Now just this week the muscle behind the knee on my left leg has overdeveloped to compensate for the majority leg not working properly. It has done the same to a smaller extent on the right leg. My left arm feels much weaker than the right. It gets tired fast if I hold it up too long or use it too much.

My calfs cramp up, my lower back aches, my ankles hurt (again favoring the left). My leg and arm muscles feel strained. I get aching pains in my feet and fingers.

I've also had fasiculations all over, although mainly after working the affected muscles. I also have them in my face, mostly around the my mouth when I attempt a small, slow grin, but also had some on my scalp today.

Also today my right hand has gotten worse at typing.

My tounge also tremors, but only when I stick it out, that's been like that as long as I can remember.

Oh. Also, my lymph node/tonsil on the right side only of my neck has been swollen for almost as long as these symptoms have been around.

I didn't even think about the Ecstasy relating to all this until I read skydogs posts on this forum.

I got in contact with the guy who gave me the Ecstasy. He said the guy he got it from had taken one and got a migrane from it but nothing else. I have found out that the White Dolphin is considered a "dirty pill" which means it's been Red Flagged by the raver community and not advisable to take because of bad trips/side effects and questionable ingrediants.

A couple of sites that track and test Ecstasy state that the White Dolphin may be made with meta-chlorophenylpiperazine (mCPP) which is a chemical used to induce migranes. It also might be made with MDxx, which is methyldioxyl combined with a mixed bag of chemicals which may include neurotoxins.

And as I'm sure many of you have read, neurotoxins may have some relationship to people developing ALS.

So I'm pretty much terrified. Any ideas?
 
Fred, maybe the question is what was in the pill you ingested, rather than if Ecstasy can cause ALS or ALS like symptoms.

If you've been reading on this forum, you've already come across the replies written earlier about the effects of X, and know there is no cause and effect for ALS found just because someone has taken this, or LSD, or has been drinking too much, or whatever.

But, also, just because you can't "give" yourself ALS like that, it doesn't mean that a person can't do some sort of neurological damage by putting the wrong thing into their body.

Even though it may be true that a neurological problem could spread that quickly, ALS does not do that. It also does not cause numbness, dizziness or swollen glands.

Irregardless of the ingredients of what you took, don't discount the ability of anxiety to to crazy things to the body. Anxiety can cause profound physical manifestations. It can also make symptoms that stem from a physical origin much worse.

Keep following up with the doctors, if you don't trust what the doctor tells you, go to another one. Its best to go to a university medical center type facility.

I hope you get some answers soon. The testing you're having next week ~ the EMG and NCV ~ will give you and your doctors much information. Try your best to listen to what they tell you about your results, and don't try to read anything else into what they say.

If it all comes back good, and the suggestion is to try some sort of meds for anxiety, or see a counselor, then by all means do it. I don't know if you're aware of this, but neurologists also have psychiatry degrees, they do understand how the body and mind interract.

If your EMG or NVC comes back with irregularities, its not the end of the world, there are many conditions that can effect your nerves and muscles, and again, ALS does not come on suddenly and all over like that.

good luck to you. :)

BTW, those reading this that respond, please keep in mind that many forum members do not have full use of their hands, and scrolling down takes quite an effort, so don't use the "quote" function button to quote Fred's entire post, just hit "reply" instead. thanks
 
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Stop drinking and drugging. Don't hang with those who do. Don't you value your life?
 
OK Fred,

My ideas on your situation:

a) Do you have full time employment with good insurance-that's a lot of dr visits/tests in a relatively short time period-could get expensive

b) Do you have family/friends that can help support you during this obviously stressful time in your life?

c) and like marg and rose have said before me...stop the druggin' and drinkin' and you will feel much better. Stress can do so much harm to our bodies.

Best of wishes for a clean EMG,
now turn off your computer, relax, and enjoy life!
-b
 
First off Fred, your friend died of a drug OD and you still take X? Why even worry about ALS if you have a death wish? Lecture over!
Don't know where your Neuro went to school but as far as I know (not a doctor) none of the neurological disorders associated with motor neurons come on in a few weeks or hit the whole body at once like your symptoms. You could have something related to the drug. I have a cousin in England about 10 years younger than you. He was at a party recently and somebody gave him something and he normally doesn't do drugs but he collapsed, almost died, coma for 2 weeks and will have some residual brain damage. No one really has any idea what crap goes into street drugs and what they might do to you. Hope the docs can get you some answers.

AL.
 
Fred,

If you are truly interested in being healthy, you will have to stop taking drugs manufactured in someone's garage, bathroom or basement.

If its any comfort, I agree with Al; ALS does not come on in the manner that your symptoms have. Let me qualify that statement by adding, "I am no doctor."

I'd also like to 2nd Al's question. Since you had a friend recently die of a drug overdose, why in the world are you still taking them? Shucky darn, man! I'd be scared straight!

Zaphoon
 
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Thanks for the input everyone!

First of all, I do have a good job with very good insurance. I'm all caught up on bills so far, but I know there will be many more to come.

I don't do illegal drugs often. This was the first time I've tried X in about 5 years. It was a drunken mistake at a party and I regret the hell out of it.

Regarding my friend's death: This actually happened two weeks after the party. He was in treatment for his addictions and doing very well for himself. He'd just started college and was doing so good and.... like that... he was gone.

So yeah, Scared Straight is right. I'm done with all that jazz.

That being said, I really do appreciate your advice and concerns. I've been reading a lot of stuff on these boards and I respect your courage immensely. All of you.

On the symptom front: My leg is really starting to get weird. It feels weak and has a few dark purple spots on the knee and a painful deep blue one on the inside of the thigh right above the left knee.

They also just scheduled the MRI/MRA for the day after the EMG/NVC.

I'll let you know how I fare.

Thanks again!
 
Thanks for the input everyone!

First of all, I do have a good job with very good insurance. I'm all caught up on bills so far, but I know there will be many more to come.

I don't do illegal drugs often. This was the first time I've tried X in about 5 years. It was a drunken mistake at a party and I regret the hell out of it.

Regarding my friend's death: This actually happened two weeks after the party. He was in treatment for his addictions and doing very well for himself. He'd just started college and was doing so good and.... like that... he was gone.

So yeah, Scared Straight is right. I'm done with all that jazz.

That being said, I really do appreciate your advice and concerns. I've been reading a lot of stuff on these boards and I respect your courage immensely. All of you.

On the symptom front: My leg is really starting to get weird. It feels weak and has a few dark purple spots on the knee and a painful deep blue one on the inside of the thigh right above the left knee.

They also just scheduled the MRI/MRA for the day after the EMG/NVC.

I'll let you know how I fare.

Thanks again!

I will leave this to the experts but physical manifestations like changes in coloration of legs etc does not sound like ALS - I don't think the tissue actually changes colors. If your bad leg is bruising it is possible you have something else like vascular probs? Hope you start feeling better

also I HATE to do this so you can stop reading after the next line if you like but... i saw on House the other day (yeah ok this is the point where 99% of people should stop reading) there was a kid who had taken X spiked with something and house was like "ur dying because your heart is messed up from the cutting agent and isnt pumping the blood right". He had lots of bad symptoms which you don't have but maybe its food for thought - perhaps there was something in the cutting agents that has messed up your legs.

If posting house recaps is against the rules just let me know and i'll edit it out. Best of luck and hopefully you will hear more from your EMG/MRIs etc (when are they again?)

-WS
 
Yeah, the bruising could be from muscle strain. Now if the muscle is straining because of my over working it or because it is not working properly is yet to be known.

No worries. I love House, but as my father says, the worst thing you can do is draw your diagnosis from a TV show. Even as good as ER or House are, they're still drama for drama's sake.

My EMG is this coming Wednesday and MRI is Thursday.

Good luck to you as well!
 
"the worst thing you can do is draw your diagnosis from a TV show" I would add the internet to your list of places to not get a diagnosis from! At least not a diagnosis you should rely on or get worried about.
 
I like "House"! When it comes to all of the medical jargon, the show loses me but I think the characters are a hoot! (Except Cutner, of course...)
 
Zaphoon I also love House and I miss Cutner. I'm sad that they killed him off.

Fred, a lot of street drugs are cut with agents that cause extreme paranoia. I'm sorry to say this but you sound like you are suffering some of those side effects. Some agents are not water soluble and can not be broken down very easily in the body so they stay in your system for weeks or even months.

It sounds like your symptoms flared up again when you ingested alcohol. Were you drinking beer by any chance? Because then you say the bacon burger also caused your symptoms to flare. I suspect this is blood sugar or gluten related. In any case, none of your symptoms sound like ALS but then again I am not a doctor. I am the relative of someone who has ALS and am also related to a former drug addict (not the same relative!) It sounds like you may have been scared straight and I hope that is the case because drug use only eventually leads to one of two scenarios: overdose or prison. Please value your life and stay clean.
 
Not to hijack this thread or anything, but does anyone out there have any idea why they killed off Cutner on House? All theories welcomed!
 
Yeah. Kal Penn, in real life, took a job at the White House. No kidding.
 
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