Old 10-15-2012, 09:40 AM #16 (permalink)
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Default Re: Questions and symptoms, or is that Symptoms and questions?

Thanks Deb....it is a trying situation to have to always wait!
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Old 10-15-2012, 11:22 AM #17 (permalink)
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Default Re: Questions and symptoms, or is that Symptoms and questions?

Jellis, if you post all your emg no's here, Wright will be able to explain them to you. Or you may pm them to him. He's our resident go to guy.
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Old 10-20-2012, 08:07 AM #18 (permalink)
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Post Re: Questions and symptoms, or is that Symptoms and questions?

I'll have to request a copy of the EMG...

One thing I do know about my symptoms is how they come and go.
For instance, I have very little problems swallowing, except huge pills which I've always had issues with.
My swallowing started 3 or 4 years ago and was greatly reduced witht he use of Proton-pump inhibitors. I was diagnosed with Chronic gastritis back then and have taken prilosec x2 ever since.

My speech issue also comes and goes, at times no one even notices and other days it is quite noticeable. However, it has not gotten any worse since the May timeframe of this year. Better at times but not worse.

Other than speech difficulties, I have no other symptoms. At my last neuro exam 2 weeks ago, the Dr said my physical exam had not changed since the initial one back in April/May.

I have had all my follow up tests since the EMG and meet with neuro this Tuesday for his assumption. So I will follow up after that.

This has been one heck of a busy year for me....My Mother had life threatening surgery back in Feb. Thank God she pulled through at 84 YO. My Dad was admitted to a nursing home in Feb. and just passed away this past week. And this stuff with me....I'm surprised I'm not taking Xanax!

I trust in the Lord that everything will turn out OK, even if it's the worst diagnosis!
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Old 10-21-2012, 08:19 AM #19 (permalink)
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Default Re: Questions and symptoms, or is that Symptoms and questions?

Oh I forgot to mention...I also have surgery scheduled for the 1st of November to remove a large cyst from my right ankle, an injury I recieved while serving in the US Air Force.

It will keep me off my feet for 30 days and another 30 days with a hard cast....

So I sure sympathise and appreciate the people on here that assist/help others deal with these issues!



BTW: My Dad was 92 1/2 Y.O. and lived a full life. He was a WW II veteran, most of which are now gone from this life!
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Old 10-24-2012, 06:45 AM #20 (permalink)
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Exclamation Re: Questions and symptoms, or is that Symptoms and questions?

Well, all the tests came back negative. For now he wants to wait 3 months and see if any new symptoms show up or if my current speech issue worsens. Another in office exam and same old same old...no changes since the initial back in May.

With everything going on these past couple of weeks I forgot to get a copy of the EMG....but I will request one and pot it here soon.

They are going to contact my dentist and request a repeat of the Novocaine injection he gave me in Sept. to see if my speech clears up for a couple days again.

For a couple of weeks after I was told the EMG test was bad I had twitches from one end of my body to the other...there is no doubt in my mind that mental stress/anxiety plays a huge roll in that. Lately I have way less twitches, and none have been targeted....they will be a finger, then a shoulder, then my eye, you name it!

Everything I have read on your site reports that symptoms never get better when it is ALS. Well if my symptoms are ALS, and it sure points down that road, then I am here to report that symptoms can improve. Poor swallowing performance can go away, which mine has for months now. Speech issues for me go back and forth too. Plus I took some of the tests under "is it ALS, do I have ALS" such as standing on one foot, walking on toes, walking on my heals, closing and opening lids with index and thumb, etc.
Maybe Bulpar onset, if that is what I have, is 100% different than regular onset and symptoms come and go. But if that's the case I haven't read much about it here or anywhere for that matter. Maybe I have just missed those posts...very possible! LOL!

For now I am just going to bury my Dad, try and enjoy the holidays, place my faith in God, and live my life.

I pray everyone has a good rest of the week and tries to enjoy the fall/holiday season coming up.

Joel
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Old 11-14-2012, 07:16 AM #21 (permalink)
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Post Re: Questions and symptoms, or is that Symptoms and questions?

Just a short update...
I have no new MND symptoms, the speech issue remains pretty constant although at times I'm pretty clear sounding.

My ankle surgery went very well, I went under with a general anesthesia and afterwards I had Oxycontin and Percocet as needed for pain....the worst pain is/was in my hip where they removed some bone to replace the cyst in my ankle.

It's taken me a little time to get used to crutches again but I only had to use them for a couple of days. Our insurance covered a knee walker and it is wonderful. I still have to use crutches to get in and out of the house, but almost everywhere else I use the knee walker.

I also do a lot of standing on just my left leg, washing up, brushing teeth, hopping, etc. So far I have had no issues while doing that.

I still have to get my EMG results and post them here. Seems everytime I thought about it something else would come up.

I'm hoping and praying that everyone has a great holiday season.
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Old 11-28-2012, 10:44 AM #22 (permalink)
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Question Re: Questions and symptoms, or is that Symptoms and questions?

Mayo just called and they have my EMG ready for pick up....

where do I post it on here or should I email wright directly?

Thank you!
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Old 11-28-2012, 04:26 PM #23 (permalink)
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Post Re: Questions and symptoms, or is that Symptoms and questions?

I have posted my EMG in the pictures section...they are public.
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Old 11-28-2012, 07:24 PM #24 (permalink)
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Default Re: Questions and symptoms, or is that Symptoms and questions?

Jelli, you are going to have to contact Wright about the EMG results. He's the expert here. All he needs is the report. I doubt he'd see this post.


Edit to add you can leave him a visitor message. Did they give you a copy of the report or just the actual test results? (There is usually a summary included)

Whatever the findings--remember, it can only be ALS when it can NOT be anything else!

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Old 11-28-2012, 08:36 PM #25 (permalink)
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Default Re: Questions and symptoms, or is that Symptoms and questions?

Hi Notme....
I did contact Wright and he explained to me how to post the images of the test.

I received both the test results and the report...I have only posted the actual tests for now.
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Old 11-29-2012, 10:19 AM #26 (permalink)
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Post Re: Questions and symptoms, or is that Symptoms and questions?

From Wright....

Hello Joel

I took a look at the EMG and you do not currently have any active denervation in any muscle that was tested. Active denervation means that your nerves are actively being damaged and they then lose contact (i.e. denervate) with the muscles they control. The normal (N) indication in the columns under PSW and fibs confirms that.

You do have a few 1+ values under the fasics column, which could or could not mean anything. The good news is that none were found in your tongue, which is where your symptoms stem.

There are also a few 1+ and 2+ values under the Amp column. Amp is short for amplitude . . . the amplitude of something called the motor unit action potential (MUAP). There is a measure of the electrical activity in groups of muscle cells called motor units. If the measured value is bigger in amplitude, the 1+ or 2+ or 3+ etc. will be indicated (the larger the value the bigger the amplitude). These larger values indicate that damage to the nerve controlling the particular muscle occurred (which led to denervation) at some point in your life but then new contact was made. This is known as reinnervation. Therefore, you have reinnervation in those muscles with the 1+ or 2+ values.

You also have some 1+ values in the Poly column. This indicates instability of the nerve, which can happen for a lot of different reasons (early denervation, inflammation, etc.).

Bottom line: that EMG is inconclusive and I'm sure they will want to give you another one in 3 to 6 months. As of right now, given your story and that EMG, you could not be given an ALS diagnosis; it just doesn't add-up (there are too many odd things that are happening, namely your ability to recover functionality).

I wish I could be of more help but I would insist that you keep me updated because I want to try to continue to help. In the meantime, ask your neuro to give you his/her impression of the EMG and make sure he/she makes it clear to you.
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