Unofficial diagnosis

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Bestfriends14

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Well, we wrapped up the EMG testing today. The tests, based on the results, point to ALS. There is chronic, acute nerve damage in his left leg and it has spread from his left leg to his right leg. Still no damage to his upper body, though (is this normal?). Both UMD and LMN show disease.

I believe that there cannot be an official diagnosis of ALS unless it is done by a neurologist. A referral is being expedited to a neurologist at the ALS clinic and we will go from there.

The doctor just kept saying "I'm so sorry, I'm so sorry". He advised my husband to get his life insurance in order ASAP.

Not a good start to the weekend.

BTW, I could not close my old thread, so I apologise for running two threads.
 

Nikki J

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So sorry to hear.

Yes leg to leg spread is quite common It usually moves from one side to the other or to the other limb on the same side it started. It does not mean anything as far as progression which path it picks as far as I know. Practically look early at mobility solutions if both legs are affected.

You are among friends here so don't hesitate to ask questions etc
 

Bestfriends14

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Thank you for your kind words. I must be strong for my husband now. He doesn't need any further stress at this time.
 

Vincent

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Welcome to the club no one should have to join. If we can be of any help, just ask. Learn to focus on today. Bad days are ahead, but it isn't all happening today.
Vincent
 

soonerwife

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So sorry to hear about your husband's diagnosis. This is a great place for support.
 

lgelb

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Calgary, you don't need to be falsely strong for your husband, just truly there for him. I'm sorry to hear of this diagnosis.

Best,
Laurie
 

Bestfriends14

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Thank you everyone for your support. You're all so brave, supportive and kind. I hope I can be as brave as you all are, sometime down the road. As of now, though, I'm allowing myself to be a whimp.
 

Lkaibel

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No need for bravery. Just be yourself and muddle through- that's what we all do to one degree or another. It was this time last year for us. I am sorry this happened to you.
 

affected

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Very sorry to welcome you.

No such thing as a wimp here - we have all felt all the overwhelming things you are feeling!!!

Now remember this is truly a huge shock, you are going to be rocked and it will take a month or two of feeling like the waves are drowning you before you start to find any kind of rhythm or stability. That's how it is. We will be here. One day you will be saying this to another newly diagnosed and will realise that giving helps us cope with it all.

For now, fall down, even in front of your PALS. Of course you have to have some strength for him, but you also have to retain a relationship with him and he has to know how to comfort you as well.

Breathe, that's my best advice for today xxx
 

WendyWooG

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Hi and welcome
Sending you huge hugs, it's going to be a bit of an emotional rollercoaster for a while, but we are all here for you both.

Wendy
 

Bestfriends14

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Thank you, everyone. I slept terribly last night; those three letters just kept repeating themselves in my head. I just want to sob and sob but I'm too scared to in front of my husband. He doesn't know much about ALS and that's what scares me, as well.

We're supposed to go on a three week trip to Central Europe in September and he still would like to go. There's so many cobblestones and Europe is not wheel chair or walker friendly. I'm not sure if he'll need either by then but I guess we would like to be prepared.

Is this diagnosis a dream? My driven, strong, funny and kind husband and best friend cannot have this. He simply can't; it can't be real. It is 5:30 in the morning here and I'm trying to stifle my sobs so as not to wake my husband.

I've never been so scared of anything like I'm scared now.

I'm so sorry everyone, to keep going on and on. I'm sure there will be someone I can talk to at the clinic, but for now, I open my heart to all of you.

Thank you.
 

soonerwife

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This forum is the best place to share your feelings. I find it is the only place that people truly understand. Clinic sees it but they don't live it...

I have found myself many days retreating to the bathroom to have myself a good cry. I have cried myself all the way to work, all the way home...

Sometimes we just need a good cry.
 

Firefighter58

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Hi Bestfried, so very sorry to find you may be joining us on the good ship lolypop. It is not a good thing but it is also not near as bad as outsiders think, it just becomes a new way of life. But just like the old way of life we have no idea of how long it will last or how good it will be, but one thing for certain it will be better then you think. Right now it feel like the world is coming to and end and all things will stop, but such is not the case.
I have been living with this disease for about five years now and I don't find it too bad, but it is very different from my old life style, but the human body is a wonderful thing if the mind can keep pace with changes and keep the body functioning as best as it can, it is still a wonderful life. Friends and family are required, probably the most to be able to keep the out look I describe here, but it works for me and I am still happy to wake up every morning.
As they say, life is what you make of It. It may seem destroyed right now, but things will get better, much better and life will become fun again. Please believe me I am there.
Al
 
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KW1234

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Hi Best friend, so sorry to welcome you here. In terms of your trip to Europe, my husband and I had booked a three week cruise with stops in Italy, Greece, Israel and Turkey. We booked it before I had any symptoms. I was diagnosed last October and hoped I would still have some leg strength by March to do the trip, but my progression was pretty fast and when we called Viking, they advised us to cancel as they had no accomodations for handicap people. We cancelled and went to Hawaii and had a great time. We did buy a travel wheelchair with big wheels which is supposed to work well on cobblestones. It is from Troy. We use it all the time as it is very comfortable. Think about your strength as well. You don't want to damage your back on a vacation as you need to keep strong for your husband. Also, one piece of advice, I am fairly well along this journey but I have been lucky to be completely pain free. I believe it is because I have been vigilent about PT and maintaining my range of motion. See if you can find a PT with ALS experience. I do sessions in a gym and in a therapy pool. My primary PT doesn't have ALS experience but she is in regular dialouge with my ALS clinic therapists and two other PT's with extensive ALS experience. Hugs to you and know we are here to cry with you, laugh with you, pray with you and help make this journey easier if we can. This is a terrific group of people.
 

Bestfriends14

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Thank you so much to everyone for some realistic and kind advice.

I do have a question about my husband's symptoms. His EMG showed nothing in his upper body and he has none of the muscle twitching that I have read about. Isn't that strange? Or is that some times the case? My husband let slip that three different doctors had suspected ALS within the past several months, including the neurophysiatrist that performed the EMG, so three doctors can't be wrong, can they?

I guess I assume that there would be some sign on the upper body, via the EMG, as well as twitching. I don't know, maybe I am now officially in the denial stage.

Thank you again, my new friends.
 
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