Husband newly diagnosed

[vltsra]

I'm new to this forum...my husband was given his diagnosis last month when I was out of the country on a cycling tour. I feel terrible that I wasn't there with him - I thought it was something minor. His current diagnosis is non-specific MND but he is telling me of his symptoms and I believe he has ALS. I am heartbroken and can't seem to function right now. He is in denial for now and is going to his GP to discuss what he thinks is arthritis in his hand today. The look of fear on his face and the thought of him suffering is killing me from inside, and it is difficult for me to deal with his denial. I am trying to reduce my work pressures in the meantime. Just wanted to reach out to others who are going through this cruel disease so I don't feel so alone and lost.

 

[Nikki J]

Welcome so very sorry. As it was unexpected it must be extra hard to deal with. MND in the US is pretty vague for a diagnosis. Do you know what is still on the table? What they based this on? Clinical exam and EMG? Has he seen a neuromuscular specialist? At this point it is vital that he be evaluated in an ALS clinic. If that was his first opinion he should have another one anyway.

Please read the sticky posts at the top of the General discussion subforum when you get a chance. As we always ask is he a vet? Scrolling down a bit you will also find the CALS subforum. No need to duplicate this thread there as CALS will read and respond here and this is absolutely the right place for this post but it is a good place for you to find support going forward

 

[vltsra]

Nikki, thanks so much for your response and kind words. I understand it is an early and non-specific diagnosis; they have done the EMG and he has wasting in his left hand along with leg weakness and some spasms. The neurologist said he could not definitively diagnose ALS at this time; we have a follow up exam in January. I am obviously very very worried at this point.

 

[Nikki J]

Sorry to be a nag but just to be clear. You said neurologist. All neuromuscular doctors are neurologists but not all neurologists are neuromuscular specialists. If this is not a neuromuscular specialist at an ALS center you should be making an appointment with one now. Once MND is on the table that is where you need to be. Apologies if you are but it was not clear to me from your post and this is really important

 

[vltsra]

Thank you I will make certain to do as you recommend.

 

[Nuts]

Vitsra, welcome to our little family. I understand how you feel about not being with your husband when he got the bad news. I had no idea either, and mine was also alone. I will forever regret that. Nikki is absolutely right, and I'm glad you are going to follow her advice. In the meantime, we are here for you. This is an awful roller coaster we are on, and it helps to have others in the car with you.

 

[vltsra]

Thank you, Nuts

 

[LifeEnthusiast]

Sorry to welcome you here, vistra. But welcome to our group. Hope January brings you more complete answers. Until then, although I know it's difficult, please try and enjoy life in the moment with your husband as best you can. No matter what happens then, there is a lot of living and laughing still to do.

Cee

 

[vltsra]

Thank you Cee. I am learning to live in the present.

 

[Gembead]

Welcome to our wonderful and caring family.
Love Gem

 

[krnNdug]

Sorry to meet you here, but there are tons of helpful and caring people on this forum. As was stated, make sure you get to an approved ALS clinic. Check and see if the ALSA or MDA is closer to you. I attend an MDA one, but am very active with the local ALSA. I am glad that in Phoenix they are starting to work together. Get a 2nd opinion and make sure you are comfortable with your clinic as you will be going there every 3 months.

DON'T feel guilty for not being there for the diagnosis. Now you know something is up and you have time now to be with him. My wife doesn't go to all my Dr appointments, but never misses clinic. She feels guilty, but I feel guilty for bringing this burden into her life. I think that is just because we love each other and don't like seeing the other suffer, like you and your husband.

Guys can be pretty prideful, so I hope he doesn't get to stuck on that.

I have determined to Love Life and LIVE LIFE each and every day. we should be doing that every day, but now the days are meant for remembering.

Good luck and many prayers.
Doug

We visit San Diego often. What area do you live? It is great that Coronado has motorized beach accessible wheelchairs. I was able to go right to the waters edge and watch my granddaughters play in the surf. What a treat.

 

[vltsra]

Thank you Gem

 

[vltsra]

Thank you Doug for your encouragement. I am working on getting a qualified second opinion. We got a second opinion but I did not feel it was truly independent. We are with Kaiser so there are unfortunately some limitations. I am going to have to push this forward for him.

 

[Dan1]

Sorry to welcome you here but you will find many kind and helpful people here. Try to take life a day at a time. If you try to look too far down the road it may be overwhelming.
Praying for you both,
Dan

 

[vltsra]

Thank you Dan. Prayers for you as well.