husband being tested

[mandi3383]

hi, i am new here and want to apologize ahead of time if i ramble but i am looking for input on what is going on with my husband. my husband is 40 years old and has had twitching in his arms for over 2 years, he has never thought anything of it just thought it was a weird twitch. in january in started having a harder than normal time opening lids on drink bottles, he can still open them he said he just has to "concentrate more" to open them.

we went to his pcp 2 weeks ago and he thought he had the classic symptoms of carpal tunnel (he has worked on computers his whole adult life) he scheduled him for a EMG of his arms, he had that test done on monday of this week and it came back abnormal.

the dr that preformed the EMG wanted him to come back to have his legs tested this past friday. he has not had any problem with his legs except some hip pain after he has been sitting at a computer for 8 hours (who doesnt right?) well the dr said the leg EMG was abnormal also and that he had muscle degeneration in all 4 limbs and "ALS is defiantly on the table" and walked out of the room.

the tech saw that that upset us and had the dr come back, he stated he needed to have a MRI, blood work, spinal tap and go to a ALS clinic.

we are beyond terrified at the moment and i just wanted to reach out for some kind of help. if anyone has any suggestions or just works of encouragement it would be greatly appreciated. thank you!

 

[ShiftKicker]

Hi Mandi-
I have moved your post to the subsection of the forum for those who have not yet been diagnosed with ALS as it sounds like there may be some question still.

I am so sorry you find yourself here. You must be so worried. I am sure more experienced folks will weigh in shortly about what questions to ask and what to expect from doctors.

 

[KimT]

Hi Mandi,

There are lots of tests still necessary to arrive at an ALS diagnosis. When the doctor said to go to an ALS Clinic, I'm sure he meant to get a second opinion from a neuromuscular specialist (most work at ALS Clinics.)

We're here for you.

 

[KarenNWendyn]

It’s sounds like the doctor was very insensitive. Sorry you had that experience. It doesn’t sound like you received adequate emotional support at the very least.

It would be helpful if you could post the EMG report. If the doctor you saw wasn’t a neuromuscular specialist, then you definitely need to see one.

Hang in there! Other conditions besides ALS are still on the table until the workup is complete and until you are assessed by a neuromuscular specialist. Second opinions are recommended as well. If it does turn out to be ALS, then there is time to process this, and we’re here to help.

 

[mandi3383]

unfortunately we have not been given a report, we asked for the one on the hands and they said it was not ready at that time. i plan on getting both reports on tuesday when we are suppose to go back and see the dr preformed his test (i have a laundry list of questions to ask too)

 

[lgelb]

Mandi, so sorry you guys went through that. You may want to have a look at the "getting a diagnosis" sticky.

The odds are still greatly in your husband's favor against ALS, and if "muscle degeneration" is literally what the examiner meant, that would not be ALS at all. But obviously we can't take anything he said too literally, so the next step as others have said is an ALS/neuromuscular center. The closest one to you is of course UT Knoxville.

Best,
Laurie