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Manhattanite

Distinguished member
Joined
May 10, 2015
Messages
209
Reason
Lost a loved one
Diagnosis
05/2015
Country
US
State
NY
City
New York
Hello everyone,

I have been lurking in the forums learning as much as I can from all of you since May 1, when my partner of 14 years was diagnosed with PBP.

He is 55, I am 47 and we live in NYC. Back in December he noticed he had trouble pronouncing certain words, so he went to his doctor in April. The doctor suspected it was a mini stroke or a tumor and ordered an MRI and an EKG from a neurologist. My partner had the EKG first and on that same visit the neurologist immediately diagnosed him with PBP and sent him home without further ado. He told me that evening and I was shocked, hoping it was a mistake. We had to beg to see the neurologist again, otherwise he wouldn't have seen us until July. On the second visit he clarified that the disease was at a very early stage. Regardless, the way the diagnosis was delivered seemed harsher than usual, especially without having the MRI or even blood work! So we have second and third opinions scheduled for June with other specialists but the dysarthria and dysphagia are both there.

In any event, here I am early in the process, dreading what lies ahead. I am coming to terms with accepting a different future than we had planned. I know that as human beings we can adapt to anything, but it is the emotional suffering that scares me the most. I am not religious but I follow a yoga practice that has helped me to remain centered and to step back a little from the emotional pain, although it comes in strong waves.

Thank you for listening. :neutral:
 
sorry to meet you here but welcome!
 
Welcome and sorry. It sounds like you are doing the best you can with the news. Second opinion is usual and third is very common even if the first 2 agree. Taking care of yourself going forward is vital so that you can help him so having your yoga practice already in place is great. Make sure you have all your paperwork in order especially if you are not legally married pay attention to the health care proxy and its wording
 
Welcome aboard the Love Boat.:)
You might want to have a neurologist specializing in MND's examine your partner. From what I know, a diagnosis can't be 100% certain without an EMG.
My ALS clinic doc told me he was 99% sure that I had it, just on his initial exam of me. He then said he could confirm it with an EMG, and scheduled me for one.
Maybe I missed something in your post, but it sounds to me like you should be scheduling an appt with an ALS specialist.
 
>Maybe I missed something in your post, but it sounds to me like you should be scheduling an appt with an ALS specialist.

Ditto that!
 
Hello everyone, thank you for your replies.

My partner was seen by the medical director of an "ALS Association Certified Center of Excellence" :-? here in NYC and he is the one who gave the diagnosis immediately after administering the EMG test (I incorrectly said above the test was an "EKG" - I'm getting used to the terminology! :confused:). The other two neurologists we are seeing in June are also ALS specialists at other hospitals in NYC that also happen to conduct ALS research. I have little hope the diagnosis will change but you never know. I just find it interesting that other people here have been in limbo waiting for a diagnosis, whereas for others the "death sentence" is instant.

Nikki J: we are not married but plan to tie the knot this summer. I was always somewhat indifferent to the gay marriage movement but boy did that change now that we are in this situation.
 
Manhattan I'm so pleased you and your partner will marry soon.
The commitment to him will help him know you are in it for the long haul, and it shows your unconditional love for him.
Sorry to welcome you here, but as you know from your 'lurking' there is so much advice and support on offer.
God bless, Janelle x
 
Congratulations on the upcoming wedding.

It sounds like you are seeing the right people. Sometimes it takes a long time to get to the right specialists which is part of the delay but sometimes the first EMG makes it obvious. Many of us got the news in the EMG room
 
Welcome, you are among friends,.

Janie
 
Welcome to this board. Though everyone is sorry to have to be here, we're all glad that there is a supportive group of people who understand what life is like with ALS.
 
So sorry to welcome you here, we are very exclusive so you have come to the best place for help and support and you will find yourself giving this as well as receiving.
 
I consider this place like a second family
 
> I consider this place like a second family

If a wee bit dysfunctional! ;^)
 
>If a wee bit dysfunctional! ;^)

ha! like archie bunker :)
 
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