AAHHHH!!! help!!

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AAHHHH!!! help!!

Postby javens on January 15th, 2003, 11:00 am

:cry:
I am having a horrible, horrible twitching day! Actually the last several days have been horrible. I've been so worried as well. My ALS fears have come back...as bad as ever! I just found out that my wife is pregnant with my first kid and the thought of not seeing my child grow up makes me want to throw up. I should tell some of my story. I'm a 22 yr old male. All this crap began back in June of 2002. Around june 1 I began experiencing a terrible pain in my groin/pubic area(I had this same pain for 2 1/2 weeks the previous october). I also had some diarrhea. I got really depressed. I thought that it was cancer or something. I was sure I was going to die. Around June 15th I began having pain in my upper rt chest when breathing. Within a couple of days I had horrible pain throughout my ribcage as well....I thought "no..the cancer is spreading". I went back to the Dr. He said that it was because I was stressing myself out. He sent me to a Gastroentorologist for the Diarrhea. He put me on Flagyl. (I also had a Ct scan of my abdomin and pelvis-perfectly normal) I was still terribly depressed. Around July 12...the beast came! I notices a twitch in my left thigh. I didnt think much of it because I've had random twitches before. Two days later I noticed random little twitches all over. Then I noticed that one of the areas where there was a persistant twitch...hurt.
I looked on the Internet and it was all over...I had a MND!...or so I thought. I went to my Dr.(who said that I was fine) and asked for a neuro appt. He sent me to a respected Nero at Baylor. (in the meantime I'd had the following tests: mri's-brain-c-spine-t-spine-l-spine, tons of blood tests, a colonoscopy, an endoscopy and an ekg(for palpitations)...all totally normal. The Gastro says I have irritable bowel syndrome...great :oops: )
My neuro said that everything seemed normal but offered an emg to ease my mind. The EMG was totally normal. I saw another neuro the next month who thought that I was crazy...and perfectly healthy. I've also seen a Rheumatologist...who says that I'm fine(other than a little dandruf/psoriasis).
i'm very frustrated right now :(
I just want it to go away! I feel like I can't devote as much attention to my pregnant wife as I want to because of the twitching, pain and other crap! When ever I twitch for a while I get pain in those areas.
I'm also worried about weakness beacause long walks seem to take more effort as well as bike rides. I get some shakes after working out too. I definadon't feel like the semi-athletic person that I was. A 22 yr old should not feel like this...I feel 60!
I'm also worried about atrophy. I started checking my body and my legs just don't seem to look right. When I do a half squat I have a groove that runs up the center of my leg above the knee.
i hope that I have something benign, but I'm just not sure anymore.
I made another neuro appt for feb 5th.
Until then...i'm worried and sad.
javens
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Postby Craig on January 15th, 2003, 11:52 am

Javens-

Hang in there. I can relate to much of what you are going through. I am also a 22 year old male and have been twitching just about the same amount of time you have been. Exercising has been almost impossible for me and I seem to get fatigued at the simplest things...10 months ago I was working out 4-5 times per week with no problem whatsoever--now I can hardly go for a 1/2 mile walk without getting extremely fatigued. I asked the neurologist at the Mayo Clinic about weakness and he described it as not being able to get out of a chair without using your arms or not being able to turn a key in a door. What you and I and virtually everyone else here have is perceived weakness, not real weakness. When I do a squat, both of my legs start to shake uncontrollably. I have developed a tremor in my hands, twitch everywhere and I know how easy it is to think the worst.

What keeps me positive is knowing that other people are going through the same thing and I don't think I have read a single post about someone being diagnosed with a serious disease and not to mention the reassurance from the doctors. I have seen a host of doctors (around 15 total...way too many) and have had 2 EMG's, MRI, EKG, Lung Test, CT Scan, Blood Work, Upper Endoscopy, and X-Rays -- all of which have been pretty much normal. Even so, I know how easy it is to think the worst.

The good news is that you have been checked out by a respected neuro at Baylor and I would have to think that he out of all people would have brought it to your attention if he thought something was wrong. You've had a variety of tests including an EMG that were all perfectly normal, and all of your doctors have assured you that there is nothing "seriously" wrong with you.

Furthermore, I think everyone on this site can attest to the negative effects of stress on these conditions...which has probably been overwhelming in your case considering your wife being pregnant and your battle with this junk.

My advice is to hang in there and know that many of the other people here are going through the exact same thing you are. Try to minimize your stress levels and stay positive as much as you can.

Take care,

Craig
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Postby DogBone on January 15th, 2003, 12:14 pm

Javens,

You do not have ALS. Are you kidding me? A 22 year old -- there are only approximately 1 person per year diagnosed with ALS in the United States near your age. I read something that showed the Cleveland Clinic's youngest person was 21, and they see more ALS than we can imagine. On top of all that -- you have no "LOSS OF STRENGTH" and no CRAMPING was reported (Charlie Horse style -- during exercise does not count)!! You do have some feelings a fatigue and other things, but if you give yourself a shot of adrenaline in the rear end every 5 seconds you are going to be fatigued and that is what you are doing every time you get all worked up. I have done the same thing and for the longest time I could have sworn that I had shoulder weakness. Funny, after I stopped freaking out -- it went away. I also had a most definate atrophy in my forearm. It was so bad that I could put a ruler up to my forearm and then I could see through the hole enough to read a book. Everyone I showed it to said -- "Gross - what is wrong." I really freaked out. Turns out, after many visits with GP's and neuros - Including the head of the ALS clinic, it is just an "irregularity of the muscle" I could not believe it. I still freak out every once in a while, but I am starting to realize that the main issue with ALS is a loss of strength. Find some way to strength test your legs and do it every other day for a few weeks. You will see your legs getting stronger and then your mind can rest at ease. With ALS, you NEVER get stronger. With ALS, you ALWAYS get weaker. So go and get out of the house, join a gym or something and take you pad of paper to write down your workout and repeat it, and in a few weeks your mind will begin to ease. You do not have it, of that I am certain. Why - because you are naturally very nervous and always worried about your body. So, when that happens ALS is a perfect target for people like us. WHY - Because many of the symptoms are things everyone has (twitching, cramping, fatigue, ill feeling, muscle irregularities). I bet that you could not find a person who has not experienced all of those symptoms. With BFS, those symptoms are exacerbated and we worry more and those symptoms even get worse. I know the head of the ALS clinic here at the University of Utah would not even give you an EMG with your symptoms. WHY - BECAUSE THERE IS NO WAY YOU HAVE ALS. I hate to be depressing, but your twitching will probably never go away. I am sure that they will become less frequent, but most likely they will never go away so we must learn to cope with them. Remember, ALS is MOTOR NEURON DISEASE. Motor implies that you must have a loss of strength or how in the world can they call it MOTOR NEURON DISEASE. Also, notice the name of BFS.

Anyway - I am sorry that you have the twitches. They are very aggravating. I do believe that God can help teach you how to cope. Hang in there - we all have bad days (like today) and we all have good days (like those to come). Please try and relax - I know it is not easy. I am sorry you are going through this, sometimes I believe it is really true what they say "Ignorance is bliss"
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Postby kim on January 15th, 2003, 9:08 pm

Javens,

I've been twitching for about 5 months. I had every test too, and know how you feel. Unfortunatly with BFS, there will be good and bad days. I truely feel that the more worry, the more we twitch.

You have a lot going on right now, and stress levels are high. Your illness is new and the uncertainty is there on whether or not it's (your twitching) anything "serious". You have spent the past several months worrying about your health, (stress) You have a baby on the way (more stress), and if you don't stop worrying, you won't stop twitching!

Listen to your Dr.s! You're condition is BENIGN! Focus on the positives! How you're gonna be a great Daddy! Strong, healthy and a terrific role model! Once you take care of yourself, it will be easier to take care of your baby!

My kids are 10 and 12. My son lost a friend in a car accident last week. I would much rather wake up with the thought of "great, another day of twitching" Than waking up with the thought "great, another day without my son!" Be thankful, things could be MUCH worse!

Kim
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Postby javens on January 16th, 2003, 12:32 pm

Thank you all so much for talking sense to me in my time of insanity!
I don't know what I'd do without you guys....I'd probably worry more and twitch more.
Craig-did you ask the Mayo Dr. why this stuff makes us fatigued, ache, exersize intolerant and shake/tremor?
I'm really curious as to what happend to our bodies to make this happen.
Also, one other thing that I've started worrying about- In my searching for anything out of the ordinary on my body, I noticed that some of my muscles feel bumpy(little bumps)...not smooth like I thought that they would. I especially noticed this when I felt my flexed calfs and also when I stand up straight and feel the backs of my legs(towards the back of the knee). I have an appt. with my GP tomorrow so I'll be sure to ask him about it.
Thanks again guys! you're wonderful.
javens
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Postby Nole on January 16th, 2003, 7:15 pm

It appears to me that you are suffering from health anxiety. You need to stop this vicious cycle. I am 27 and have been twitching since June 2002 also, but I cant even tell you when or where I twitch right now because I have stopped thinking about them and analyzing them. Some days I dont think I twitch. You need to let yourself relax, it is going to take time, maybe months for your body to calm down from all the stress you are putting yourself under. Focus on the positive, you are going to have a baby, how wonderful!!! You need to be strong for your child, your family, and most of all yourself. Best of luck we are here for you!
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Postby kim on January 20th, 2003, 9:50 am

Javens,

One more thing I might add. I don't know if you have considered the possibility of taking an SSRI like Zoloft or Paxli, but for me, it put all of my health obsessions to rest. I can honestly say that I worry 99.9% less than EVER, and for me, it was a life saver.

Think about it. (If you haven't already)

Km
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Postby Carolmarie on March 17th, 2003, 11:01 am

I'll agree with Kim about the anti-depressant. My doc put me on 25 mg. of Elavil at night. (It's an older anti-depressant--some of the newer ones will actually make you more hyper.) Anyway, I sleep everynight now, whether I happen to be twitching at bedtime or not. I started on 9/12/02 and it's been an emotional rollercoaster for me, too. Even after 6 months of twitching I have days where I think I have ALS or MD or some type of slow growing neuropathy. Good luck to you and keep us posted!
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