Seeking input here - back problems caused by MND?

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Re: Seeking input here - back problems caused by MND?

Postby Xina535 on August 11th, 2015, 12:13 pm

misterjuanperalta wrote:For me, twitching has been happening since July of 2014. My sensory symptoms are more noticeable, but no weakness. Tongue twitching is very minimal now. Mayo Clinic visit on May 26, 2015 was "normal".

See link: viewtopic.php?f=8&t=21622#p162527


Yes, I saw the link and I already copied and pasted all of those values and EMG locations in an Excel spreadsheet, to bring to my doctors.
So, misterjuan, if you primarily have sensory (no weakness) and your visit was normal, your twitching onset is over a year now, why would you say that you are still looking for answers, even if it is ALS?
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Re: Seeking input here - back problems caused by MND?

Postby misterjuanperalta on August 11th, 2015, 6:57 pm

Because I want to know what is going on. Everything has a reason for being.
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Re: Seeking input here - back problems caused by MND?

Postby Xina535 on August 12th, 2015, 6:00 am

misterjuanperalta wrote:Because I want to know what is going on. Everything has a reason for being.


make sense - but I was just curious to know why you would keep ALS still as part of the possibility. I guess it can always just be a possibility for anyone at anytime and people can have more than 1 thing going on at any time. I pray, hope, wish, etc. etc. that you get to the bottom of it.

I have a whole excel spreadsheet full of gluten free, sugar free, carb free, caffeine free foods, supplements and am working on a diet plan for the next 10+ days to see if I have any changes in symptoms. I am thinking about blogging my diet/progress, not sure yet. I know I will keep a personal journal about it all though. I plan to post updates on here too. I hope to start this weekend after we go shopping for all the good stuff.
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Re: Seeking input here - back problems caused by MND?

Postby Xina535 on August 15th, 2015, 10:01 am

Ok so I went shopping and I got all my meals together. Today is day 1.

But, guys, I'm still freaking out about my arm. It's so weak, I couldn't carry a shopping bag in it, it kept sliding out/down so I had to load my other arm double the amount.

It hurts too. My whole upper left arm, shoulder blade in the back and left side of my neck/trap muscle.....it hurts a lot. It feels like I had worked it out extremely over its limits. All I did were some stretches yesterday and the light exercises the physio guys told me to do.

Today, the ice pack on my left arm and right arm felt equal. So now I am doubting the other day if it really was numb or not??

This is so hard to deal with. I feel like my arm is useless. I don't even know how to treat it, what I should do? I will go to my doctor on Monday and ask if she can do an emergency acupuncture session. But what else?

Actually come to think of it, my arm feels like how it felt when I went to the neuro who performed the EMG when it was abnormal and I had clinical weakness. Feels like that. I thought it should improve since April?
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Re: Seeking input here - back problems caused by MND?

Postby leroyb on August 15th, 2015, 12:39 pm

I don't think acupuncture will anything besides quack relief.

Is your arm much weaker than last year?
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Re: Seeking input here - back problems caused by MND?

Postby Xina535 on August 15th, 2015, 2:34 pm

It is not much weaker, if anything, I think it's the same? If I am standing with my arms out to my side like a "T" and my husband tries to press downward on both arms above my elbow, he can't bring either one down with good force. BUT, it's very warm inside (the whole area feels warm), hurts - if I press on my deltoid area even lightly it hurts, it feels heavy, like there are solid, metal plates in there. This feeling is from my left trap muscle, around my shoulder blade, my deltoid and also some part of my tricep by the elbow (underneath). It twitches just occasionally in that whole area, but I feel like it's going to fall off at times.

I tested the numbness of my deltoid area with a needle and scratching with my nails - it feels slightly duller on my left arm, not as sharp as my right.

The last neuro I went to EMGd my deltoid on 14-July, and it says:
No denervation activity, scattered dispersions, predominantly "normkonfigurierte" (?) biphasic potentials with no evidence of neurogenic damage.

He says in the report he thinks I could have a shoulder problem, but it's not worth trying to diagnose because the treatment will be the same: physiotherapy

I had written before that my deltoid and my bicep were the only muscles EMG'd - what about my neck/tricep/trap/shoulder blade muscles? No image of my shoulder either.
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Re: Seeking input here - back problems caused by MND?

Postby leroyb on August 15th, 2015, 4:11 pm

Very little you describe there Xina matches anything I've heard of related to MND.

If you can bear it mentally there are some forums where you can post EMG results and they will tell you straight out.
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Re: Seeking input here - back problems caused by MND?

Postby Xina535 on August 15th, 2015, 4:25 pm

Can you please advise which forums?

And what is the "very little" you are talking about?
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Re: Seeking input here - back problems caused by MND?

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