ALS? Husband’s symptoms: being evaluated next week by neuro muscular specialist

[Nikki J]

It doesn’t sound anything like an ALS EMG. With that emg and no upper motor neuron signs and no real clinical weakness you should be clear. When you do get a diagnosis please stop by and let us know. Happy for you

 

[WAdams]

I’m so frustrated right now. The neuromuscular specialist called and said my husband’s EMG last week is unusable. He said it was so poorly done, he would not trust it at all. They’ve scheduled a repeat at another clinic on March 29th. Is this typical?

 

[Nikki J]

Not really. It is certainly true that when you go for a second opinion they often order another emg because they want it done by someone they know and trust. It is highly weird that the doctor who ordered it does not have emgs done by examiners they trust. Whatever happens next consider going to a major hospital center

 

[WAdams]

It was a weird situation. His clinic originally scheduled the test for July. But, he wanted it sooner and suggested we reach out to other clinics to get a faster test date. So, we did and went to another clinic. Now the doc is so disappointed and frustrated with the quality of the test, he’s insisting we go to his clinic and miraculously he got an appt for my husband on March 29th. So, I’m thankful for that. But, the whole process feels like a roller coaster. I’m sure I’m preaching to the choir with that statement. I know it’s a frustrating process. It was nice to have almost a week of not worrying about ALS. But, the doc says we can’t celebrate yet. We go to the University of Kentucky ALS clinic. I’ve heard it’s a good one, but it’s hard to tell, I guess.

 

[Nikki J]

Oh ok. It seems like he could have just asked to fast track within his system to start with Are you seeing Dr K? I would trust his opinion

 

[WAdams]

No, he sees Dr Katyal, but Dr K is Katyal’s boss. I think they have a fairly good reputation, which makes me feel lucky we live in this city.

 

[Nikki J]

He looks like he has excellent credentials. You are lucky as you say. So am I as I live in Boston

 

[WAdams]

My husband’s EMG re-do is on Friday morning, however today we got the results of the one done a few weeks ago that his neuromuscular doctor felt was done incorrectly. I wonder why he didn’t like these results? The performing doctor felt confident there was no worth of ALS with this but the neuromuscular doc isn’t agreeing just yet. Am I missing something here? I’m attaching them if anyone has time to give an opinion. I appreciate you guys.

 

[Nikki J]

Hard to say. Perhaps because it didn’t correlate with his exam? Good luck on Friday

 

[WAdams]

Thank you for responding…I’ll update soon.

 

[WAdams]

Repeat EMG went good. This time is was super thorough and the neuromuscular doc did it himself, which felt very reassuring.

He still wants to get Swallow testing done and wants to reevaluate weakness and such at end of April. If all is fine there, he wants to reevaluate again in six months.

He said today he doesn’t see ALS which is very promising but he can’t explain why the symptoms are there. He did say it could be neuropathy, but said he’s not ready to release the motor neuron idea yet even without it showing on today’s EMG. But, we are thankful for the good news and as of today are free from the worry about the most critical conditions. Hopefully this is goodbye for me on this board. Unless something drastic changes, I am confident in his doctor’s and their current opinion.

Again, I appreciate you all and will be sending healing vibes and hope to everyone always. We will also continue to keep up to date with ways to help the ALS community.

 

[Nikki J]

Thanks for letting us know. Happy to hear. Hoping things continue to point away. A thought- ask if a physiatry consult would be helpful Physiatrists are physicians who specialize in rehabilitation.