New member...

[redrider67]

Hello my name is Mike and this will be a lengthy intro...

I finished up testing for ALS had everything but the muscle biopsy. EMG's, MRI's and blood-work all came back negative. I'm thinking my doctor and the neurologist wanted to hit my insurance up. My reason for saying that is this, here is the lengthy part of my intro. I still have some twitching in my left arm to this day.

9-21-2007 had a motorcycle accident at 105 MPH, I was wearing gear but fractured my left tibia. Also went airborne and slammed into the pavement via my helmet, left shoulder and left knee. After rolling down the highway about the length of a football field I came to a stop.

Fast forward to June 2008 had a low slide around 120MPH, that day had full leathers on. Messed up my hands and most likely damaged my shoulder again.

Since the first crash would always get some twitching in my left bicep, figured it was just some sort of nerve damage from one of my crashes. November 2008 started going to the gym 5 days per week, after about 5 months only managed to lose about 6 pounds. Another trip to my doctor who is a DO and not an MD ran some more tests and found out that my "T" levels had dropped to 150 from 525 which was back in August 2007 when I hit the big 40. Cholesterol was not high enough to drop my T levels that much. My doctor prescribed me Andro Gel which actually worked very well, I dropped about 20 pounds and 14 inches off of my body. After reading about Andro Gel for long periods of use I took myself off of it and started a more natural approach and it's working a lot better.

I guess the reason for my post, I think some doctors blow things out of proportion! I went to the doctor for shoulder pain which I knew was from my previous motorcycle crashes. I went through 2 months worth of testing for ALS... Finally went to my doctor and told him since you killed 2 months of my life and had me worried, and felt like I wanted to end my life think you could give me a referral to an orthopedic. Finally went to an ortho found out I have a huge bone spur on my left shoulder that when inflamed presses on my muscle, nerve and tendon near my cuff. On a anti inflammatory now that is helping.

I still have the occasional twitching of my left bicep and sometime down into my left hand, so I'm still freaked out by it.

Mike

 

[Al]

First of all, from an old biker, I hope you don't ride any more. You sound like a death wish waiting to happen. I'm not a doc but your stuff sounds more crash related than neuromuscular. You're lucky to be alive. Count your blessings.

AL.

 

[charlottecorday]

I agree with Al. I would be jumping up and down joyfully if I had a bone spur messing with my nerves.As it is, I'm so positive I have ALS because of the illogical reasons three neuro's are saying I don't.I wish I had insurance to bleed.I am on an "unspoken
death panel"(uninsurable till 2014)They do not order other tests because they know I have ALS and think(thank God) I have no money to pay for extranious BS.I am getting worse everyday, I went to exercise today and was sooo weak I almost threw up and passed out.

I still cannot figure out why people worry if they are not denervating anywhere.If someone could explain this,I would be grateful.My problem is, I am only denervating in one region, and to get a clinical diagnosed of ALS,you have to be denervating in three regions.Al or anyone,please feel free to correct me if I'm wrong.

My father was an MIT grad in chemical engineering. He was a FRICKEN genius.He told me once" God takes little pieces away from you(functioning) as life proceeds till there are no more pieces left."

I never took him literally.It is coming to pass.My feet look really odd, bones real protruding,skinny(always been skinny everywhere, but this is abnormal.)

The rest of my symptomology has been repeated so many times, I am parrot-like or robotic.Most all of you know them.I can afford Hopkins, but what is the purpose.

Seriously though,donate the bike and get the tax write off.I lost a friend when I was seventeen to a "deathtrap". more since.Start doing Yoga, might help with the twitch.

I'm jealous,but glad for you, somewhat of a dichotomy.

 

[redrider67]

I wish good doctor' s were easy to find, explained to my neurologist numerous times about my crashes but refused to listen to me just ordered test after test!

Amazing after seeing him numerous times it makes your brain go crazy!

I came here to gather information and to tell my story, and pray for anybody diagnosed with ALS.

I'm in the process of finding a new doctor now, but they are pretty hard to come by now.

AL I still ride but have slowed down a lot, Charlotte I'll keep you and your family in my prayers!