Struggling with stubbornness and denial.

[Aloneinthis]

I was working through being diagnosed with an illusive "something" in 2020...my family has a strong history of MS so I was almost certain that MS was what we were looking at and I was READY for that beast. But there were zero plaques, zero pain, zero altered sensations, negative lumbar puncture...it wasn't MS. The first time I heard PLS from my main neurologist, and then the MND consultant, I googled ferociously and felt the strong mixture of terror but also relief? I guess? So, it wasn't the worst of the worst bad boys? But through a series of check-ups (and one second opinion) there was noticeable Lower Motor Neuron involvement on a follow-up EMG, and onset of muscle fasciculations in the leg/foot that was first affected and the consultant gravely told me it is Limb-onset ALS. That was November last year. This is the short story. After months of chasing doctors and then continuous bad news, I don't like to linger on my diagnosis journey too much because it tends to rear it's head for me every two to three weeks anyway...because I believe I'm in serious denial.

I am noticing the changes in my body. My foot-drop on my left has worsened, I am struggling to grip, lift and twist with my left hand, I am experiencing pain in my unaffected muscles as they try to compensate. My shoulder is shrinking (strikingly noticable as the currently unaffected one looks like I'm smuggling a tennis ball in my trap by comparrison!) And while I am also aware that my right hand has joined the party...progression is slow and I am so stubborn that I simply try to ignore what is going on with my body and try to keep going as before. To the point where I am now beginning to injure myself in the process; the number of bruises because I pingpong off the walls rather than using my aids, pulling good muscles because they can't take the strain I'm putting them under. And the fatigue it's causing is devastating!

Since I noticed my grip and twist in my dominant hand start deteriorating (two weeks ago) I've been scouring internet forums and WebMD for mimics, for other possible diagnosis, for -anything- that means it's not this. For something that 2 MND specialists and the 3 other Neuros might have missed. It is completely preoccupying my mind; I don't want this. I can't have this. There has to be something else!!!

And this happens every time I register a new struggle. I look at my diagnosis'. I look at the test results that directed towards it. I look at the letter that started the whole thing where it was just observations of a positive hoffman sign, bilateral clonus and hyperflexing. And then I tumble head long into despair for 2 or 3 days. And then I'm back out the other side going; No. No. We are dealing with this. We are living with this. We are coping with this. Get on with it!!!

I am wondering if this feeling ever goes away? The sense of panic, anxiety and just this sudden onset REFUSAL to believe that this is really happening? If, at some point, I'll just accept it?

 

[lgelb]

I'm sorry. Denial may come and go all the way through.

It's a monstrous disease, so that seems like a pretty normal response to me. We see it in other "unacceptable" diagnoses.

I think "acceptance vs. not" is a false dichotomy. Obviously, there is no choice but to accept that certain things like loss of mobility happen. It's not that you are faking them or missing an obvious solution. You can't walk if you can't walk.

But for many, "lack of acceptance" is the only context under which they can move forward with life, until the time that they can't. That seems pretty normal, too.

So I would advise you to stop revisiting your tests, letter, etc. once they are in your patient portal or wherever they belong. It is much easier to keep moving when you are not reliving the "ifs" but just doing the "thens."

 

[Lori7]

Hi. I was diagnosed in December 2023 and I’m still very much in denial too. You are not alone. Every day I wake up and I think, oh no, I’m dying. And then I think, well, maybe I’m not dying. Maybe I’m misdiagnosed, or, if it is ALS, maybe I’ll live a long time with the disease. Meantime, my limbs are getting worse. Then I think they might find a cure, or a better drug, or if I pray, there will be a miracle. I distract myself on the computer most of the day, and when I’m just resting, I start going around in circles again.
My sister is a doctor, and she said, “so be in denial. What does it matter?” So I just carry on and try to have hope, because hope, after all, is not a bad thing.

 

[SandyMK]

In our family we say, "Denial is a beautiful thing." Sometimes the reality is so harsh, you just can't look at it right away. You need to sneak up to it, side-eye. Let the idea sink in a little at a time.

Our son has ALS, and as he went through stages of denial, resistance, anger and depression, my wife and I were busily researching the kinds of things he would need, trying to stay ahead of the curve. We want to have what he needs before he needs it.

Sometimes, stubbornly insisting that it's NOT happening is downright dangerous. One hard fall can easily break a bone, cause a concussion, or land you in the hospital. And they happen when you least expect it. Your knee simply buckles, and down you go!

Nick is 2.5 years in, and he says the emotion work is HARD, but you gotta do it. He frames it as, "What is happening is neither good nor bad, it simply IS. The question is: how are we going to manage it?" And he is confident that, come what may, we will be able to figure something out to keep him as comfortable and independent as possible, as we go.

This is the most hideous disease anyone ever invented. Sending you love.