Dusty7

It's ok! I figured you hadn't seen it. Yes and I also got even more results. They did an MRI of his spine and they found something on the left side of his L4 L5 s1 but they said this can't explain why he's having all the symptoms on the right side as well.

Sorry, Eric, I tend not to see my notifications. Didn't mean to ignore you. You can send private messages, but I don't know the rules. I think you have to have a certain number of posts.
I assume you're looking for an interpretation of the EMG. Let me know.

Hi dusty I was wondering if there was a way I can post something privately to you? I don't see that option here.

Dusty, thank you for the support. You are in my prayers. I know it isn't much, but I ope it is better than nothing.

Hey dusty, unfortunately I'm back on the als forum :/ I posted a new thread under is this als? You were a bi help to me the first time around so I was wondering if you'd mind taking a look? Thanks in advance for any help you can give!

Sorry, just saw your message to me. (I never seem to focus on that part of the page.)
Good news that you are working towards a diagnosis. I agree about having questions about a PLS diagnosis since he has atrophy... widespread, as I recall. But yes, atrophy is generally considered a LMN sign and not present in PLS which is only upper. Of course, there seem to be exceptions to every rule when dealing with MND. Good luck at Mayo. There is a very nice Courtyard by Marriott very, very close by. Expensive, but if you have Marriott Reward points, it's convenient.
If your husband has a new EMG there (which is normal), the NCS will probably be done by a tech, the EMG by one neuro, then your consult will be with another neuro. And the consult can be pretty quick, so have your questions written down and ask them all. Their EMG chart is very complete, so be sure to get a copy of it (or at least sign the forms to have the EMG sent back to your neuro or PCP.)
Good luck!

Hey Dusty7- just wanted to update that my husband will get to go to the Jacksonville Mayo at the end of this month. We found another local neuro who did a thorough evaluation and diagnosed him with PLS. I am still not sure just because he does have atrophy and his progression has been quite fast. But at least we are close to getting some answers. Thank you for all of your help.

I can still walk, speak, swallow, and write. I also still work. All my clothes can be pulled on and I still dress myself. I eat a regular diet. I use a BiPap at night. My last FVC score was 76%. This was up 3% from the last one. I attend an ALS clinic in Dallas and have a pulmonologist in my hometown. My GP coordinates my care in my hometown with my other docs. He than relays info to the clinic.

The first thing I noticed was a year and a half ago. I started to have trouble buttoning pants. I put it down to weight gain. Then in March of last year I noticed how much more boney my hands were than usual. Put it down to getting older and maybe arthritis. You have to know that this was denial on my part. My grandmother passed away in the 70's of ALS. Finally in July of last year I went to the doctor and was diagnosed in September. All 3 EMGs I had stuck needles in both thenars. One doc even said "well that nerve is dead, you have carpal tunnel." Bad doc. Last EMG was a massive one. All four extremities and neck area. I have involvement in all areas. My husband and sister noticed changes in my speech over two years ago, and I noticed I couldn't keep up with my students as well.

My hands are pretty atrophied. Thumb pinch strength is at a 1 on both thumbs. Hand grip is 8 on right and 10 on left, though i am right handed.

Click on my name that is in blue and underlined on this message. It will take you to my profile. Scroll down until you see albums on the right and click on the atrophy one. Let me know what you think.

You are a very helpful and knowledgeable member. Regardless of what you may think about me , I'd like to thank you for any time you've given myself or others dealing with fears and educating people on this disease. I wish you all the balance and peace possible.

T

Hi Dusty
I put two more pictures in an album called atrophy on my profile. One is the inside of my hand and of my foot. Just wonder what you notice. I always laugh when DIHALS people post "there is a dent on my____, I just know it is ALS."

I have no pain in my wrist. I dad 3 EMGs. The first was done so wrong. The doctor said it was carpal tunnel, and no signs of ALS. But his report said possible anterior horn disease (aka ALS). The second one was done by a Neuro that knows his stuff. It was done on neck, both arms and left leg He said no carpal tunnel and ALS in the differential diagnosis. He did a MRI of head, neck, and back. He referred me to an ALS specialist. He did an even more extensive EMG than the second one. It included more areas on all four limbs, neck and back.

I have involvement in all areas legs, arms, breathing and speech. I use a BiPap all night, though I've started having headaches and think it will need to be used during the day. I go to the clinic in Dallas every 3 months. We live about 5 hours from Dallas but it's an easy drive.

I know this isn't going to be a happy ending. But for now it's my fairy tale and I love it.

I wondered if I that college guy was Christopher again. Why do people want to mess with people who have a serious disease? I doesn't make any logical sense. Kim

I saw your question about my hand atrophy. Yes I do have atrophy of the thenar muscle (the thumb area). I also have a much deeper pit in my palm. I can't clap loudly anymore. I have atrophy in my arms and elbow area. The upper arms are just starting up.

Legs aren't bad but that's coming soon.