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Flip4it

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Jan 28, 2012
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Learn about ALS
Country
US
State
Maryland
City
Myersville
I haven't been on here in a while but I am deeply saddened and extremely anxious awaiting an EMG and nerve conduction study scheduled on Oct. 9th. After a collection of apology letters from doctor's and 7 neurologists, we are at the point of not turning a blind eye to my condition. On Sept 7th, a doctor looked at me and was so angry at the treatment I have received and horrified at my condition and told me to "immediately get on the phone with a neurologist that knew what they are doing". My condition is finally been termed "severe". How angry it makes me.....duh......I've been saying this for 11 months and playing the doctor shuffle. My left hand is almost gone (skin over bone), the atrophy is widespread and severe now, I was discharged from physical therapy because I've gotten worse and in August the fasiculations set in. I finally sent two pictures (1 year apart) and a video tape to a patient advocate. My God, Ray Charles could see how severe my situation had become. Initially I complained about my hands for a long time, progressed to the left side of my side and has now decided to move to the right. The side of my neck is concave and really having trouble holding up my head now. I look like a damn chicken compared to the avid golfer that I was in the summer of 2011. I've had 11 months to prepare and it won't knock my socks off. What angers me is that it's bad enough when you're fighting for your life but you have to fight with incompetent doctors too. They tried to blame it on a herniated disk! It's been a crazy ride for sure. I'll keep you posted but new neuro suspects motor neuron disease so we'll see. I don't want to be a member of this forum (no offense) but depending on how it goes, I have a very interesting story....we've all got one. I just turned 50 this month.
 
Wow - that's an unbelievable story! I hope you find out for sure on Oct 9 - what's really going on with you. There are many other things it could be - besides ALS.

I don't want to be a member of this forum either- who would? But, I am ever so grateful it's here for me.

Hopefully, you will not post again- except to let us know that you're A-OK and moving on.

Good luck.
 
I used the atrophy in my hands to show CNA students what it looked like. My point is, how could 7 nurses miss it, let alone 7 doctors. The neurosurgeon I went to for ny arm atrophy is the one who said it was in both arms, not just the one I could see, and first said he thought it was ALS.

It seems strange you were so neglected! Is your neck MRI horrible? Mine is...but not enough to account for my hands and arms.

Remember, there are still other potential causes. I suggest an ALS specialist.
 
I finally have a Neurologist that has immediately ordered an EMG and nerve conduction study. I was so impressed that FINALLY I have a doctor that put me in a hospital gown and examined me. He immediately saw the fasciculations in my legs, and he asked me if I was having them in my arms and back (which I am). Both feet have them 24/7....drives me crazy....feels clicking under my skin. He didn't need to see me walk up and down the hall, it was obvious that my gait was impaired because of the severe atrophy in my left foot. My doctor was just as behooved as the spine specialist that I saw on September 7th that I've been pushed off to the wrong doctors. Both doctors stated that my spine is not the cause of my condition. So much time has been wasted trying to get someone to take responsibility to do appropriate testing to give me a diagnosis for "whatever" this is. I pray that this isn't motor neuron disease but I don't look like the same person, I have widespread atrophy, clinical weakness and now fasciculations so I have every right to be concerned. It took 11 months to get to this point. MS is ruled out, Sjogrens is ruled out, Mystena Gravis is ruled out. Everything hinges on the EMG....wish me luck. It has really taxed me emotionally because I would like to know if I have something I'm going to die of or die with. I know everyone on here has experienced that same feeling and it's not fun. At least, once I know, I can get busy living.
 
Thanks Elaine, I didn't mean I didn't want to be part of the forum in a rude way.....I just want this to be something other than ALS but my symptoms strongly suggest that this could be motor neuron disease and this is what the neurologist is investigating. I'm not jumping the gun until after October 9th. I wish there were some sort of forum for people that are severly neurologically ill waiting for a diagnosis. It took 11 months to finally receive a letter telling me that I need to see a Neuro Muscular Specialist and my condition is severe. I just can't get over this taking 11 months.
 
I know what you meant! LOL

I really do feel for you but happy you found a Doc who heard you!
Try to relax until the 9th. I know it's not easy- especially with what you've been through. My experience was the total opposite of yours - diagnosed within 3 weeks of seeing my GP. It was like being hit by a MAC truck. But, despite it all, I'm here to tell you positively- there is life after diagnosis. Real, urgent and meaningful life.

No matter what they find in your case (and I hope it's treatable), you WILL come out the other side.
You do have friends here who understand and empathize.

Try to get out everyday and really see something different. It will help- whether it's a blade of grass you've never noticed or a flower or a cute dog. Stop and admire them. You'll lose yourself in the wonderfulness of it all and stay in the moment. Works for me! (oh - and extra hugs are a great analgesic to).

Do let us know!
 
Off to mod land again...
 
The waiting for all the tests to be scheduled and then again for the results to come in is maddening.
Hang in there. I hope they can figure out something for you.
Please let us know how it goes.

In the meantime take care not to fall. Use a cane or rollator or whatever it takes to keep you safely mobile.
Do you have foot drop? The doc could order AFOs for you if indicated. They really help with the fatigue of walking and improve your gait. No more tripping over grout lines between the tiles.

Stay safe.
 
I am unable to lift my left foot so I've was prescribed forearm crutches. The problem is that my left hand is basically skin on bone and it is terribly painful to use them. I put moleskin on them but still (and I'm sure you understand) putting weight on skin over bone is painful. I ordered custom medical grade sheep skin covers which is much better and comfortable :) The overall weakness is becoming a problem to use these as an assistance device. Doc. says no to a scooter and must use wheelchair because my balance is too bad and also need support for my neck. I use a bone pillow at home for neck support but this is becoming a huge problem. (no offense to my elders) but my posture is that of someone 90 years old. I keep practicing everyday keeping my head up (in more ways than one). What's most frustrating is my gait....I've forgotten what it's like to walk normally....still practice everyday....my neuro smiled when I told him that :)
 
Elaine,
Thank you so much for your kind words. This is the first summer of my entire adult life that I haven't been able to play golf. I focused my energies on backyard wild life that I truly have enjoyed. I had hummingbirds everyday, there are deer that eat from the bird feeder, I saw my first hummingbird moth :) This has been life changing for me this year but I still am trying enjoy the things that I can. Some may think it's corny to watch birds and chipmonks and deer but I notice the things that healthy people don't. My sadness is for them miss because they're missing all the beautiful stuff that God has given all of us and equal chance to enjoy. I'd rather watch hummingbirds than fasciculations :)
 
I'm with you, flip it ill take hummers over fasiculations any day!
 
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