Any insight appreciated....

[DreamsEnd]

I don't know about clean (or not) EMG's as my PALS never had one and his DX was confirmed by 2 different ALS specialists but I like Atsugi's and lgelb's replies. There is hope until you get a second DX at a recognized ALS center or doc.

My heart aches for your young family and I can only wish you strength and courage. You're showing a lot of both already. If your husband is a Vet contact your nearest Paralized Veterans Assn office immediately.

As far as traveling great distances for a 2nd opinion and/or care, it all depends upon your finances - you're going to need all the resources you have in the future IF it is ALS.
Hugs,
Sherry

 

[mkboreson]

Mayo Clinic appointment

I just got my husband an appointment for a second opinion at Mayo in Minnesota. We are seeing Dr. Sorenson. We are hopeful and optimistic he can diagnose him with something other than what he has been given. Thank you everyone for the support!

 

[Blondrea]

Hello. My partner of ten years was also diagnosed, about three weeks ago. We are both experiencing sheer terror and shock. But, he has two "dirty" EMGs. I thought a clean EMG meant no ALS, but I am certainly no expert. Here's how we were "diagnosed." We go to the neurology department at UCLA and have found the team there both very unorganized, and entirely lacking in bedside manner. Very cold keystone cops. So, we are waiting to see our ALS specialist, bracing ourselves for a possible diagnosis, and a young woman comes bopping in and oh-so-cheerfully tells us about the "lender closet" for ALS patients. So, does that mean…he has ALS? The doctor came in and said that yes, she has never seen anyone with his symptoms who didn't have ALS. So, I asked, is this a…diagnosis? Yes, she said. And then traipsed out because she clearly had more important things/people to attend to! We were, and are, shocked and stunned. We are going for a second opinion but NOT at UCLA. And who cares if you "upset" your neurologist? If it's ALS, well, what can be done anyway? So, so, so sorry to hear what you are going through. Please believe me, I understand totally.

 

[mkboreson]

Sherry,
Thank you for the thoughts, prayers and advice. We are trying to be strong and positive, especially around our boys. They don't need to know how upset mommy and daddy are right now. I will keep you all as updated as I can.

Blondrea,
I am so, so sorry. I understand the feelings of shock and terror. I agree that you need a second opinion. I hope and pray that it isn't ALS, and thank you for sharing your story.

Kelli

 

[MaxEidswick]

>I just got my husband an appointment for a second opinion at Mayo in Minnesota. We are seeing Dr. Sorenson. We are hopeful and optimistic he can diagnose him with something other than what he has been given.

great news. hoping.

 

[gooseberry]

Kelli, How old are your boys? A few of us have school age kids. Stepg

 

[Barbie]

blondrea that is a terrible story! I am so sorry to hear that happen to you. did you find a new clinic? I would not go there !

 

[mkboreson]

Steph,
Our oldest just turned 5 in March. He will be starting kindergarten in the fall. My youngest son will be 3 in August and our daughter was born this past January. How old are your kids?

Kelli

 

[mkboreson]

Symptoms: wax & wane?

Hello everyone,
We are new to this, having only been diagnosed last week. We have had all clean EMG's with one that had one or two slight markers indicative of ALS. My question is about my husbands initial symptom, his hands. They started feeling strange 18-24 months ago. He would have me pop his knuckles and then they would feel better. He would also have me squeeze them and they would also feel better. His hands have progressively gotten "weaker" over this time, but sometimes they are normal. Yesterday, for instance, he worked outside on the fence for our backyard. Used a chainsaw, wire cutters and didn't notice a thing, other than he doesn't feel they are at their full strength. He can tie his shoes, button his shirts, brush his teeth, etc. He even opened a brand new jar of salsa and opened a ziplock bag of cheese. Some days he has hard time with ziplock bags and so on, but never has he not been able to use them in daily functioning. He is a little slower, but not unable. Also there is no atrophy in either hand? The fatty muscle between his thumb and pointer finger is exactly the same on both hands and looking at it, you can't see any dents. Is this normal? This is giving me hope and I don't want to be blindsided again. Also, he said his legs felt sore last night. I asked what he meant and he said sore like he had been weightlifting. He lifted weights on Monday night, but not legs. I didn't think pain/soreness was a symptom of ALS? I am so emotionally exhausted, as I'm sure every single one of us are, and I keep grasping at straws. I just don't know what to think. We have an appointment at Mayo Clinic in June, on my birthday. I'm hoping for the best birthday present ever...... Thanks for listening.

 

[mkboreson]

Re: Symptoms: wax & wane?

I want to also say that the Neuro that said there are slight markers for ALS, also said in the same breath that they don't necessarily mean ALS. I don't even know what that means?

 

[Nikki J]

Re: Symptoms: wax & wane?

Get a copy of the EMG. It seems like something is missing from what you have been told that made the diagnosis.
In the meantime if it is ALS weightlifting is NOT good. Anything that stresses the muscle like that and causes a little breakdown does not rebuild like it did before. It will accelerate progression

 

[MaxEidswick]

Re: Symptoms: wax & wane?

>We have an appointment at Mayo Clinic in June, on my birthday. I'm hoping for the best birthday present ever

 

[mkboreson]

Re: Symptoms: wax & wane?

Thanks, Nikki. His Neuro told him it was fine to lift? Oh my goodness, I am so confused now. We specifically asked him if he was good to go back to lifting weights and he said yes. I am requesting a copy of the EMG today. Thank you!

 

[mkboreson]

Re: Symptoms: wax & wane?

[/QUOTE]


Right back at you, Max. My oldest son is a Max, by the way. Excellent name! :smile:

 

[mkboreson]

Re: Symptoms: wax & wane?

Thanks, Max!

We have a Max, too. Great name, for a great guy. Thanks for the positive thoughts! :smile: