Old 01-11-2010, 07:01 PM #1 (permalink)
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Default Update on my condition and latest exam...

Hello Everyone and Happy New Year.

I wanted to post an update for anyone that might be following my situation bc it is similar to their own. Its been since late May of 2009 since I have had an EMG. I just completed an EMG at ClevClinic last week. I still have many of my symptoms. A few have got better such as my fatigue, but some have gotten worse and some new ones have surfaced.

Better- Fatigue (this started when I changed my diet to gluten free. My Dr. said this could be attributed to less carbs, she said that whenever someone goes on a low carb diet that they get a burst of energy. Not sure if I agree but I guess time will tell.

-Twitches- My muscle twitching feels as though it is less frequent and not as big. I used to have little ones mixed with "thumpers" where my whole tricep or pec would move and you could see it through my shirt. Now the twitches are very fine, I almost cant see them but can still feel them.

Muscle soreness- This is better but not resolved. The stiffness is also better but not resolved.

Worse

-Muscles are seemingly flaccid, soft, and overall smaller. This is happening from head to toe and every muscle in between. It is involving muscles that I don’t really work out (facial muscles, neck, tongue) as well as those I do. I have noticed that all of these muscles have lost girth as well, especially my forearms. They look deflated and my skin is very loose. This is in spite of me continuing to work out as usual.

-Weight, I have lost around 25 pounds since Oct. I am not sure if this is due to gluten free diet which is certainly possible but the weight loss is very rapid. I have went on diets before and lost 6-10 pounds, 25 is unusual for me.

-Alcohol- any alcohol makes me sick. I get bad shooting pains behind my jaw under my ears when I drink any beverage with alcohol. I also get bad fatigue within 30 minutes and an upset stomach a few hours later. This is with only 2 or 3 glasses?

So, I got my EMG. I would like to briefly talk about the experience because it seemed a little strange to me. The gentleman doing the EMG did a thorough job in comparison of some of the others I had (I have had 4 since Sept 2008.) He tested a lot of spots, probably over 30 all on my right side. This included foot, leg, hip, glut, back(lower and upper), shoulder, hand, arm. I was watching his face during the exam and it looked as though he was frustrated, he kept getting a puzzled look on his face and shaking his head, but never said anything.

He finished and said he needed a second opinion since my last EMG was normal. Another doc came in the room and listened to the recording of the EMG for a few spots that I guess were suspect. They did this for a good 15 minutes. Then, he said he would send my DR. in to talk to me. I was freaked out at this point, but not surprised bc I thought there could be a chance they could find something and had prepared myself mentally for this. My Dr. came in and said that my EMG didn’t look much different from the one I had in may and said it was mostly normal (I haven’t seen it yet). I asked her about the Dr.s listening to it over and over and she said that they were listening to one spot in my foot that was probably just caused from wearing my shoes to tight? I finally asked her what she thought about MND and she said she cant rule it out but it is very unlikely at this point but cant say with 100% certainty. She said she wanted to follow up with one more clinical exam appt. in 6 months. I asked her if she had any idea what is causing my symptoms and she said "no idea" .

So, I am glad the EMG is clean. I am still very worried about what is going on with me, especially the weight. I know it is not ALS, I hope nobody minds that I still post here. I have had about 10 PM's in the last 2 months of people asking me if I ever got diagnosed with anything so I figured I should give an update. I am going to get referred to an endocrinologist and a gastro Dr. Take care and thank you to everyone for the kind words you have PM'ed me. I really appreciate the support and I hope 2010 is the year that the cure to ALS is finally discovered.
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Old 01-11-2010, 07:12 PM #2 (permalink)
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Default Re: Update on my condition and latest exam...

Good to hear from you!
You sound sooooo much like me, more so the part of flaccid muscle all over. My twitches were big thumpers in start and are know more fine. My fatigue was bad in the start but got alot better but I didnt change my diet. I can go all day but my muscles hurt and ache and twitch.
Good luck in the quest, and let me know what you find. I go back in feb. to als clinic. I was thinking about switching to gluten free diet but unsure at this point. and sorry about the alcohol....bummer. Wine helps relax my muscles.

talk to you soon

april
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Old 01-11-2010, 07:28 PM #3 (permalink)
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Default Re: Update on my condition and latest exam...

Dont switch to gluten free until you get tested. I was told it can cause a false negative. You can get a pretty easy blood test for this but it is not super reliable, a lot of false negative. The biopsy is what really will tell them if you have it. I hope one of us finds out what is causing these issues. Hang in there April!
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Old 01-11-2010, 08:35 PM #4 (permalink)
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Default Re: Update on my condition and latest exam...

thanks,

I will have them run the test prior. The only reason I thought it was that, is during all this(end of 07) I had contracted a horrific intestinal infection called c diff and I thought maybe it triggered something. I was in and out of the hospital for 3 months with it and I could not eat anything and was on IV antibiotics and anti fungals. I went to bathroom (if you know what I mean) 30x a day, And I am NOT joking on the amount. It was the worst and i was in isolation at the hospital. but feel ok today. Anyway.....who knows, I will hang in there. I also thought that all the heavy duty meds gave me neuropthy as many of them say they can, but that does not seem to be it either. Lets keep in touch.
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Old 01-11-2010, 09:05 PM #5 (permalink)
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Default Re: Update on my condition and latest exam...

CB,

Did you test positive for celiacs? I would think the change in your diet is what caused your weight lost, it makes sense.
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Old 01-12-2010, 01:44 PM #6 (permalink)
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Default Re: Update on my condition and latest exam...

I was tested back in Oct with a blood test. It came back negative. I decided to go ont he gluten free diet anyway because I was told that the blood test often does not show a posative reading and the biopsy of the small intestine is the only way to really tell. I think the weight lost is probably at least partially contributed to the diet but the muscles getting soft and gradually weaker compared to my baseline while I continue to work out is most concerning to me. My muscles also just dont react the same to working out and I am wondering if I am doing damage by working out at this point. The muscles in my face have been significantly affected, they are just softer. Anyway, I figure that sooner or later I will get bad enough that what is causing this will become apparent. Hopefully sooner. Take care.
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Old 01-12-2010, 01:48 PM #7 (permalink)
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Default Re: Update on my condition and latest exam...

CB,

Glad to see your update. I have been thinking about you since I was pretty sure the date for your latest exam had come and gone. Will echo April in that so much sounds familiar.

I'm glad your latest EMG was pretty much normal. I had a similiar experience at the U of Utah where the Dr performing the exam asked for a second pair of eyes to take a look. I got a bit nervous as well, but it ended up being just a small fib. the Dr. wasn't sure was worth commenting on.

Hang in there, and hope your new year is a good one.

Robert
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