Your Dx?

[Phil M]

Did your Neurologist tell you to have a family member with you when he gave your the Dx? I was by myself when I got mine. I will never forget the ride home! I was in the area where I have spent most of my life, and I was having problems not getting lost on the way home. It was so weird!

 

[Al]

My daughter who is a nurse came with me. During SARS outbreak so could not take wife as well. Rough ride home as well but she drove.

AL.

 

[luvnmm]

My mom had my dad with her, but I don't believe they told her she had to have someone with her. How awful that you were alone when you received the news! I can only imagine what must have been going through your mind at that time. I am so sorry!

 

[ricci]

my husband was with me and i was glad he was but the crying together helped, he has tried to be as helpful as he can. he is a truckdriver and only comes home 1 week every 2 months. so basically i am alone. my daughter does help when i ask her to. i was diagnosed in mar 2010.

 

[Salad Rider]

Sounds like a hit and run! Did you have any idea what your disease was before that?

 

[Phil M]

Sounds like a hit and run! Did you have any idea what your disease was before that?

Not really, I had convinced myself it was anything but als!

 

[BarryG]

I was not told to have a family member with me but we knew what was going on for some time before so it was really just a confirmation. All the same it was quite a thing to actually hear him say "you have ALS" and I am glad that my wife was there. Our clinic is a three hour drive away from home and I am glad that I didn't have to make that drive alone.

Since I have been diagnosed and attending the clinic they do say to bring a helper for my visit every three months.

 

[Ladyinn]

My son was with me but not because they told me to bring someone. He drove me to Mayo (10 hr trip) and stayed with me that week of testing since I was falling a lot and not able to drive since my left arm had already stopped working, making it difficult to turn the steering wheel or flip the lever for the turn signals. I wasn't safe.

I think I was in a fog after the diagnosis even tho we suspected this dreaded disease was going to be their findings. I just acted like they were all wrong and he was the one who heard what the doctor said and was able to fill me in on the drive back home.

Diane

 

[CAHPAH]

I recieved my wife's diagnosed over the phone while I was at work. At that time I was working 60 miles from home. It was a long hour and fifteen minute drive home. Then had to tell my wife and both my daughters as they came home. Had to re-live the pain three time that afternoon....longest day of my life.

 

[brooksea]

I pretty much knew my husband had ALS, but was praying it was something else. I did not tell him what I thought it was, but persuaded him to go to his GP so he could get a referral to a neurologist. He went to his GP by himself and the GP knew, but did not tell him (one of the GP's friends had ALS). The GP quickly got him in to see a really great neuro. All the GP said was that it was very serious. I went with my husband to the neuro appointment. I had researched and researched neurological disorders and did not want him to face a diagnosed alone. Still hearing those words, "you have ALS...I'm sorry there is no cure...2-5 years...get your affairs in order," stabbed me right through the heart!

To answer your question, Phil, nobody mentioned bringing someone with him.

 

[pmbenb83]

I'm so sorry you went through this alone. We were not told to have someone with my husband. I can't imagine getting this news alone. Pretty insensitive on the doctors' parts and to be told over the phone... what is that? Doctors should be sent to sensitivity training before being set loose with patients!

 

[abbas child]

By the time I needed to go to Hopkins because the local doctors had declared it a mystery, Phil went with me anyway, and was nearly carrying me. However, the day I (finally) got my diagnosis, both the local Neuro and the Hopkins Neuro had decided I had a different (MMN) disease, and as soon as the electrical study proved it, I was to be transfused and begin to recover very quickly. The doctor while sticking needles into me told us what she was finding, so ultimately she diagnosed me. I remember as she kept finding those dirty spots, my mind was racing ahead, but since I'd been told so many times I showed no ALS pattern, it was a total shock, and even then, "ALS" wasn't mentioned. It was Motor Neuron Disease. Phil knew what that meant, I did not. I didn't cry until I called Dad to tell him that I wouldn't be Mom's caregiver after all. That was a week after the Hopkins trip. I came home and made an appointment with my favorite Neuro. (I had a whole cast of doctors, but only one who really cared and showed it.) He shot straight from the hip, giving me the hard facts.

Phil M, it seems to me they should have told you to have someone with you.
Jim, over the phone? That is awful.

 

[Danijela]

Partner was invited for a lumbar puncture and asked to bring someone with him. I went, they asked us to sit down and told us that NO, no lumbar puncture needed - he had motor neuron disease. It has never been mentioned to us before. That room started to spin and I vomited all night.

 

[John1]

I received my diagnosis, when, home alone, I checked the messages on my answering machine. A message from a doctor at the Montreal Neurological Hospital advised me that, based on my test results, I probably had ALS. Prior to that I had no suspicion. Top that for a way to find out.

 

[chriss]

My husband had been in hospital all week having tests. I had a suspicion about what they were looking for because the request for admission form when he was admitted had ?mnd but even then I thought they were way off base and so I didn't say anything. Anyway the neurologist and regisrtars were doing their morning rounds and said that he was being discharged today. They were about to leave so I said he has been in hospital all week and now is going home so what did they think was wrong? Maybe I shouldn't have said anything but there was also the stress of having symptoms and tests and the not knowing why. He said probable motor neurone disease and that he had a life expectancy of 2-3 years and then left and a social worker was paged. The resident brought in some pages he had downloaded from a website on mnd and there were at least half a dozen different types listed so I asked him to point out the one he had and he pointed to als. Then we went home and tried to find about it.