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Kristina1

Senior member
Joined
Jan 26, 2017
Messages
822
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
City
Grafton
This is mainly a rant.

I'm frustrated by emotional lack of acceptance of this diagnosis. Intellectually I am there, but emotionally I keep torturing myself by over-analyzing everything and thinking up reasons why maybe it could be wrong. Part of it is that I am not disabled by this yet. It's sometimes hard to speak, and my affected hand is stiff and gets tired easily and cannot always open packaging or little things like that. But in general I function quite normally. I've had symptoms for over a year and I find myself thinking surely I would be a lot worse off by now if I was truly dying.

The diagnosis process took me from seeing (separately) an ENT and an Orthopedic hand specialist, to a neurophysiologist for an EMG, to a neurologist, to a neuromusucular neurologist who did a more comprehensive EMG and gave me this diagnosis. Now I'm set to be seen at the ALS clinic in a week and a half. With each doctor I feel like part of me is waiting for them to burst out laughing and say "Gotcha!!!!! Just kidding! How ridiculous, of course you don't have ALS!" But every time it's been "We are concerned about a MND, so we are referring you to..." Now I'm at the last stop and pathetically still hoping the doctor at the ALS clinic will somehow say "Those fools, of course this isn't ALS, can't believe they diagnosed that, it's a simple case of ____." Last week the neuromuscular neurologist told me to cancel my follow ups with the neuromuscular clinic because "The ALS clinic will take care of you from here," and it felt like a punch to the gut. I realized she really doesn't think I'll be going anywhere else. She thinks this is it.

Why can't I stop torturing myself and just accept it? I feel like all I do is set myself up for more disappointment. Every time I google, AGAIN, trying to find some other answer, every time I see the next doctor. Every time I dissect what each doctor told me, word for word, looking for a hidden clue that might mean this is less certain.

It's just crazy. Statistically this should never have happened. I'm a 31 year old woman. I keep getting hung up on that thinking there must be some mistake. But intellectually I am 95% sure the doctors are correct and that I have not been misdiagnosed. It's like having a split personality, being sure it's true but simultaneously expecting to find out it's not.
 
You are in shock. It's part of the process, which sounds horribly clinical but is not meant that way.

The first month or two after diagnosis are a time of incredibly weird head-space and you can bounce around between so many emotions and so many though processes.

Denial is a really common one and a self-protection reaction that makes complete sense. Come on how could this be possible, it's all a huge mistake. Yep, we can all identify! It is something you will work through, this is the biggest shock you can receive - don't ever underestimate that and think you should be coping better xx

Ranting is really healthy!
 
Kristina, I am the CALS not the PALS and I honestly still hold that 5%. Okay, maybe it feels more like 1% now, but I hold that wee chance in my heart nonetheless.

To me, it is both normal and this tiny ray of hope I indulge myself in from time to time.

I literally cannot imagine being diagnosed at 31. Give yourself time and love.
 
As Tillie said, denial is common and protective. I was in denial for months, even though if someone asked, I would say that it's ALS. After a second opinion confirmation, my denial changed to, although I have this, I will beat this. This lead to home trials of some of those protocols out there and a lot of time and money spent at a Naturopathy Clinic. It took me about two years to recognize that despite all of the effort and positive (denial) thinking, my ALS was progressing anyway.
I sorrow with you that at such a young age, you must face such a great trial. You are the same age as my daughter.
 
Denial is not just a river in Africa. It is my happy place 2 1/2 years in. Death is a lot like the sun. You can only look at it for so long before damage sets in. Are you that different from who you were the day before you were diagnosed. My daughter is getting married this fall, when picking out flowers she asked about including the blue cornflower in her bouquet, the symbol of ALS in Canada. I said absolutely not, we are not giving energy to ALS on her wedding day. I'm only sick when I have to see medical people, otherwise I'm still who I was before I got this. I'm just limited physically. Don't knock denial, it;s what get me through these days.
Vincent
 
I find myself going through the stages of grief over and over and in no particular sequence. Nothing is right about how you handle this disease. It does seem like you have a very slow progression.

I don't claim the disease. I say I was diagnosed with ALS. That helps me separate who I am from the disease.
 
Thanks for the replies. I guess I hadn't thought about denial as a source of hope/comfort, I had been thinking about it more as a source of disappointment, and thinking if I could just accept this maybe I could move on and feel more emotionally level. Right now it's a lot of ping ponging between emotional poles, from denial to feeling like I can "do" this, to feeling suddenly devastated, to panic, to uncertainty. I strained my arm/shoulder area pushing my 35 pound four-year-old in the cart at the supermarket today and that's new for me; up to now my limb weakness has primarily been in my hand/pincer grip, not my arm. It just made all the feelings boil up again. Anyway, thank you all for listening.
 
"Denial is not just a river in Africa. It is my happy place 2 1/2 years in" Love this quote Vincent..... may I borrow it occasionally?
Kristina, I am still in denial too.... I think all of us are, to some degree.
vent away Sunshine..... (pretty sure I did a few weeks about a silly old door lock...) The folks here won't judge you.... I would bet dimes to donuts they will empathize and sympathize.... maybe even come up with a few handy-dandy solutions.
Hugs for you (one armed ones, at least!) from (ewwwww)snowy Ontario!

Angie
 
"Denial is not just a river in Africa. It is my happy place 2 1/2 years in" Love this quote Vincent..... may I borrow it occasionally?
Kristina, I am still in denial too.... I think all of us are, to some degree.
vent away Sunshine..... (pretty sure I did a few weeks about a silly old door lock...) The folks here won't judge you.... I would bet dimes to donuts they will empathize and sympathize.... maybe even come up with a few handy-dandy solutions.
Hugs for you (one armed ones, at least!) from (ewwwww)snowy Ontario!

Angie

Thank you Angie! <3 I did read about your door lock and wanted to reach through and give you a hug! It is hard feeling like some tiny little thing (like a door lock) is defeating you. I hold back angry tears every time I have to bring my husband the toothpaste for him to unscrew the top for me. He is trying to remember to leave it loosely on (but not screwed), but sometimes forgets. Anyway, hugs all around.
 
Angry tears I soooooo understand.....
Just remember, (as the song goes) "you've got a friend in me".... (yeah Toy Story!!!)

It's the little stuff that gets to me.... coffee lids, toothpaste caps, marker lids....

Angie
 
Kristina

I'm at the exact same point you find yourself in.. could this possibly something else...???? Please!!!!!

I was finally diagnosed January 17th, 2017... this process took over 3-1/2 years.. through that process all I wanted to know what is what is this??? now that I hear the diagnosis all I want to think is it cannot ALS!!!!! I'm in denial...

I have no great words for you..

Wishing you the best through this trying time

Scott
 
Kristina,

I think it's normal to hope that the disease has been misdiagnosed. For months after my diagnosis, I still hoped that I'd get the call saying it was "just a mistake". I even said: "I won't sue anyone if I were to get a call confirming that I don't have ALS/MND". Two years later I'm building a ramp for my "soon to be delivered motorized wheelchair". The medico ( and I do have many) are making noises to start using a Pap Machine and inserting a PEG into my stomach. The later is just scary! I'm still processing these new demands.

warm regards,

K
 
One theory of grief that has helped me accept my own grieving process is called "ambiguous loss" by Pauline Boss. There is a very good interview with her on the NPR show "On Being" - Google it. She talked about how American culture is a "culture of mastery," problem solving and "moving on" where we are uncomfortable with unanswered questions. But some questions have no answer - some mysteries cannot be solved...

She describes what you are experiencing as "paradoxical thinking" - holding two opposing ideas in your mind at the same time. She claims that this way of thinking helps in reducing stress. I catch myself thinking this way many times and I remind myself that it is normal and that it helps with this awful process we are going through. Even though my PALS has months to live, I still fantasize of a future together with the dreams we originally had for old age. It makes no sense but it does bring me comfort and I indulge in this way of thinking without questioning it...
 
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I dont have accepted the disease too and i think that i never will
I am 35 and have the disease since i am 33
 
Christina,
I am sorry to hear of your diagnosis....it sucks, really sucks. In Dialectical Behaviour Therapy, they talk about the emotional mind and logical mind, and in between the two is the wise mind. It sounds like at this point, the emotional mind hasn't quite connected, although I do think its important to know that's ok, because accepting it emotionally usually takes longer.
It's probably true that you're mostly coping with denial, and that's also perfectly valid, especially given the level of mobility.
What I have learned over the past 2 years is that people cope with it in different ways that is largely effected by their circumstances....for example, a 90 year old man already diagnosed with a terminal illness will probably cope with it much differently than a 25 year old guy right after a divorce. And you know what? It sucks you got it at 31, because most people your ago are active....I was, and that was 12 years ago.
I guess there no "shoulds" in this one, and that gives you more control...be easy on yourself, and distract yourself...it's too big to think about it all the time.
Cheers
 
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