"deeply concerned"

[Bestfriends14]

Hello,

I am not quite sure what to say, or if I am in the correct thread. Anyway, my husband, who is 45 yrs. old, was diagnosed with drop foot in January of 2016. We were told it would eventually go away through strength training and physio. Unfortunately, it just got worse and so my husband was put through numerous tests, including blood work and spinal MRIs, which all came back normal. He did have an EMG around August 2016, which showed wastage in his drop foot (left foot).

Anyway, fast forward to Christmas and my husband's weakness got significantly worse and he started tripping and falling nearly weekly, as well as extreme shortness of breath and occasional coughing while eating or drinking. He is also tired constantly and can sleep for 10 or 11 hours straight.

As well, he went back to get another EMG on May 3rd 2017, with a different, and much better, EMG specialist. This time, the muscle wasting is in my husband's entire left leg and foot. The doc said he is "deeply concerned" about an MND , possibly ALS, and has expedited his return to do an EMG on his right side to see if this has spread. The EMG specialist is working through his lunch just to see my husband. Our appointment is on the 12th.

I'm not really sure what I am asking here, but if this is ALS, is this progression normal or does it seem symptomatic of ALS? My hubby does not seem to have issues with his arms or hands. The EMG specialist is Dr. Tulsi, in case anyone has heard of him.

Thanks all.

 

[Firefighter58]

Sorry to meet you here , there is no such thing as normal progression. We are all different and all progressions are different.
Al

 

[ShiftKicker]

Mod note- Moved to DIHALS thread, as not yet officially diagnosed.

I am so sorry you find yourself here. While the Canadian medical system can grind exceedingly slow, it looks like you have received excellent care so far. I am sure others with more experience can chip in here with answers to your specific questions.

Welcome. Sorry you have found yourself here, but know it's an excellent community with a deep well of information.

Fiona

 

[Bestfriends14]

Thank you kindly for responding. I forgot to mention that my husband is now walking with the aid of a heavy duty $1400 leg brace so he can keep his balance. He also has a black toe nail from when he banged his toe about 6 months ago. Because of whatever is going on, it is still not healing. Lastly, my hubby says there is no pain in his left leg and that it is just "heavy" and like it no longer belongs to his body and that he's dragging around this dead weight day in and day out.

The 12th seems so far away.

 

[Bestfriends14]

Well, the 12th is now only a day away. I will go to the appointment with hubby tomorrow so that I am not asking the poor guy for a million details and can get the information first hand.

When pressing him further about his last EMG, he just said that it was very loud and crackly and that as soon as the neurophysiatrist looked at his leg, he commented on how much smaller it was than his right. My hubby cannot balance on his left leg and, of course, cannot walk on his tip toes.

With this information, it has worried me further and I tossed and turned all last night. I assume the doc, with the testing of his right side along with other regions tomorrow, will be using the El Escorial method for official diagnosis. I pray for any other MND, other than ALS.

It is strange how you look back and see the further progression of muscle weakness over time. My hubby used to be able to drive a standard vehicle and ride a bike, but can no longer do so. Last Saturday he tried to set up the patio furniture, as he has done every summer for 14 years, and collapsed when he lifted he table. He could not lift it above his waist and did not even make it past the first patio step before falling. I had to aid him the rest of the way.

I'm not quite sure why I am writing this, but I guess it is for some sort of release. I will worry and cry on my own and be strong and supportive when I am with my husband.

 

[Nikki J]

Sending you strength and good wishes. Please let us know when you can.