Intro : Me and Him

[KrisTie H.]

Hi My name is Kristie. my husband has not been positively diagnosed yet but everything I read and see on him and in him say's ALS. He has had symptom's for about 2 1/2 yrs but the Dr's never seemed to concerned. M.S, pinched nerve in neck, pinched nerve in back, stroke, old injury, I'm so scared. We met on line 8 yrs ago and he moved to Utah from Missouri to be with me. The premise for our whole relationship is "We will Never Be Alone Again". Now I'm faced with not only being alone but losing my best friend. And even worse watching him die slowly.

I don't know where to start even he is convinced it is something else but the dread inside of me say's ALS. And just in the time since the nero said " I think it's MND" he has gone down hill the use of his left hand is almost nothing now and he is dragging his leg to almost not picking it up at all and his balance is just so much worse. Even his work place has started questioning him about his symptoms and diagnosis. They have never said anything or asked anything in 2 years. It's so much more noticeable to everyone.

Trying to get him in to the University of Utah ALS clinic everything I've read has said get him into a clinic ASAP.

I see time slipping away and everyone calling the shot's seem to be in no hurry.

please help. I feel like I'm all alone.

Thank you for your time.

 

[Atsugi]

Medically, if he does have ALS, being in a hurry won't make a difference.
But for benefits such as social security and veterans affairs, every months delay is another month of benefit lost.
What makes you think your husband has ALS?

 

[KrisTie H.]

because about 2 1/2 yrs ago he speech got so bad you couldn't understand him he always claimed that he talked real fast and no one could understand him but it wasn't that he sounded like he had a mouth full of crap. He even lost a job because of his speech. Even then he wouldn't admit their was an issue. Then he just stopped using his left arm and holding his hand at a weird angle {now he can't use his left hand at all} all the muscle in his left arm is gone. Just gone when he got here I gave him a ring it was a size 12 and fit great. We just got married it will be 1 yr Feb 14th.. when we bought the ring a year ago we had to have it re-sized twice to a 10. About 2 yrs ago I thought he was just getting really lazy cause he was dragging his feet mostly his left wearing out just the left shoe every 2 months. Now he can hardly pick it up, he chokes on everything we drink mainly water and he is choking all the time I thought it was just cause he would guzzle everything as quick as he could and was always telling him to slow down. The same with his food. He has always shoveled food in it drove me crazy it was like he was in a food eating contest at every meal about a year ago I made him (and My grand-kids) a new rule as the grand-kids had starting "eating like grandpa" that they had to chew eat spoonful and swallow it before they could put another spoonful in their mouths. He chokes at every meal now sometimes all through the meal. And the neurologist he just saw on the 5th of Jan said she is thinking MND. I had never heard of it so thought we where all good until i got to the cal and googled it. I was dumb founded. Also she said he has atrophy in his left arm and shoulder going down to the middle of his back. And since the doctor appointment I've noticed he is having a real issue using his right fingers and hand and he is so unbalanced I'm scared for him to walk by the stairs by our room. Also right about the time the symptom's started he dropped 40 pound just all the sudden. And the doctor inquired about that as well. She said she wanted to fast track him to get to a muscular neurologist clinic at the University of Utah. When I called them they sounded like he had already been diagnosed and said they would call back with an apt schedule? we are praying for anything else at this point.

 

[lgelb]

Mike, Kristie said that a neuro dx'd her husband w/ probable MND.
Kristie, you can make an appointment with the clinic yourself, then transfer any records manually if necessary. If a referral is needed by his health plan, keep demanding to speak with someone higher up the food chain until you get one. Did the neuro who said "I think it's MND" do EMG and NCV testing (needles/shocks)?

Best,
Laurie

 

[KrisTie H.]

She said she was making an apt for the nerve test and then she canceled it saying she didn't feel it was necessary. and sent a referral to the clinic. and they wouldn't let me make an apt. they said they where waiting on more info from neurologist and they would call me back.

 

[Nikki J]

I am so sorry what you describe sounds like it very well could be but he needs full testing to rule out everything else and the EMG, once all the other tests are done is usually where we get an answer. I wonder whether part of the hold up is the clinic is waiting to review the EMG thinking he has had one? My clinic wanted the EMG in front of them before they made an appointment. Might be worth asking that question of the clinic as they were waiting for more info

 

[JimInVA]

Nothing else to add at the moment... but did want you to know that you are not alone, here. My best...

Jim

 

[KrisTie H.]

Thank you everyone. I took Him to the FP Dr yesterday, He asked for a few moment's to read the neurologist note's and while he was reading he got teary eyed and said "This isn't the way I wanted to end my day" I'm so Sorry... But I thought they might say that." So your here for a game plan and what do we do next?? my husband said quickly "We don't no anything yet I still think it's MS" the doctor looked at him like he was crazy and said "you DO?????" and he said "Yes I do" the Dr said okay so let's get a really good team together for our next steps. My husband said we don't know anything yet so I don't need a team. of course I had to tell the Dr what he was saying cause he couldn't understand him. We left their with a mood stabilizer and more IB 800's and muscle relaxer. I just don't know what to think anymore. I don't want a diagnosis. I really don't. What should I think? Thank you all so much.

 

[Nikki J]

I am so sorry. I guess I can see your husband's point if he has not yet had an EMG. But given his symptoms, his neuro opinion and that of the PCP you need very much to get to that neuromuscular consult. Can your pcp help with that? Can you call him and explain everything? It sounds like he will do what he can. Maybe if he called saying he was just following up. His patient was referred and he is checking on the referral. Is there anything they need to expedite it that he could help provide? It is horrible being in this situation and much as you hope for a different answer even if it is ALS it will be better when you know for sure and can start to deal.

 

[scaredwifetx]

Kristie, I am so sorry. I can remember all to well the feelings we both had during that stage. I will keep you in my thoughts and prayers. Make sure to take care of yourself and try to get some sleep. You will be the strength for your husband through this process and we all hope and pray there is different answer. You are not alone and you will quickly find out what a lifeline this forum is. Fear is unavoidable but everyone here will do their vest best to guide you.

 

[lgelb]

Kristie,

Of course, he needs to hear what he is dealing with.

I would call the PCP tomorrow, who knows the issue, and ask him to call the neuro (U of U ALS clinic won't be interested to hear from the PCP) and request her to expedite an appointment at the U.

Because your husband's diagnostic process has been so prolonged, you have special circumstances to deal with and I would also begin discussion with your local ALSA and/or MDA as to resources in your area. The worst that can happen is that the neuro is wrong, and you've contacted them for nothing.

It may be that the neuro anticipated that the U clinic would want to do its own EMG, and thought to spare your husband two in a short period of time. But as Nikki notes, the lack of an EMG may also be slowing your appointment. So that's why your neuro needs to get things straight with the clinic, and hopefully your husband can have a definitive diagnosis very soon.

 

[Nikki J]

Pcp calling the clinic won't make them say gosh yes we will see him right away no. But I think it very well could reveal the cause of a delay ( missing EMG or other paperwork) vs just not done yet. Then pcp can call local neuro and tell her to work on it. Pcp is more invested than neuro it seems.
By the way how long has it been?

 

[KrisTie H.]

Thank You

It's been just about (seriously) 4 yrs I've noticed thing's but he would NEVER hear of it. It was nothing the stiffness and lack of mobility due to falling 7 yrs ago and breaking 3 rib's. He said he got use to not using his left arm and now he just can't use it but he will ask the Dr next time he's see's him for refill medication's. and when he would come home he would always say the Dr wasn't worried about it. So about 1 1/2 yrs ago I went with him to the doctor I made the apt and told them it was to discuss his left arm and shoulder weakness and dragging his left leg. The doctor sent him to Physical Therapy. the PT said it was from the injury. 6 week's of PT and their was a little improvement. 2 week's latter it was worse ALLOT WORSE. So I Started Looking for a family DR. I made his apt that day and went with him. The new DR gave him the once over and then another and another. He didn't look happy and said "Maybe MS. But that's not a diagnosis I will ever make without a back up from a nero" and he made the appointment. So honestly about 4 yrs ago it started. Sorry for the whole story but it help's me.

 

[Nikki J]

Sorry let me be clearer how long has he been waiting for the neuromuscular appt to be scheduled?
thanks for detail though 4 years is a long time actually

 

[KrisTie H.]

About a week and a half. I know 4 yrs is a long time. But it's so hard for me to say. He had really awful habits when he moved here and I couldn't tell if he was just trying to do the thug walk or if it was actually an issue. The for sure signs started 2 1/2 yrs ago. That's when I started to really notice that he couldn't help his speech, and the drooling and his hand was just getting smaller and smaller. So let's say definate changes 2 to 21/2 yrs ago.