Did not want to join this club. And YES, I've read all the stickies!

[pulisa]

Thanks, BlueIris, for your reply. I think I want what we all want: "certainty." Sadly life doesn't offer that, does it?

I am working through a book on HA now (Owens and Antony, "Overcoming HA", if anyone is familiar with it.) I'm on chapter 3 right now. I have set up and kept 3 appointments with a MH professional so far and have another today. I want to be less miserable, but I also want to live to see my toddler have a grandchild. Which, come to think of it, wouldn't happen if I was right and DID have ALS -- so what's my hurry to have an answer, exactly?
It is funny that I am having this degree of emotional reaction to a swift, incurable disease that so far my neuro doesn't yet think I have.

I wonder, though, how can you both get out of the hole AND pursue an answer to what's wrong with you?
I am not making the double vision in certain eye positions up, I flunked the "how many fingers" test in the neuro's office. And, so far, this is unexplainable.
I am not making up the twitching in R lower leg, it was on the EMG. This is explainable, given my disc issue.
I am not making up the R hand slowness, it was on the NCS. This is in theory explainable, in a borderline way.
The tinnitus would in theory be visible if someone grabbed an otoscope at the right moment, but you'll have to take my word for it! And, so far, this is unexplainable.
How do I pursue answers for all that while also combatting the HA? Or is that exactly what I need to learn?

You can't pursue answers if you wish to be able to manage your HA. You have to trust your neurologist who is an expert in this field. You have to accept that your desire to be one step ahead in the diagnostic process will bring you misery.

[kyllikki]

Thanks, Pulisa, that is massively hard to hear, but I know you're probably right. As I said, God forbid I am correct, what would change?! It is 100% fatal, nothing even meaningfully slows it down.
It's not like I am talking about a curable cancer which could be "caught early"
If God forbid this is it, what's my rush to be properly diagnosed??

Lana and Jojo, you're both also right!

In fact, let's all pray everyone is right about me except me, please!! (Lana and JoJo and nicknak who I think was posting recently too, I am 100% sure you all do NOT have ***!!!)

[kyllikki]

Oh I forgot to mention. I have a challenge from my therapist not to Google anything related to *** for a full week, to try to eliminate at least one of my "safety behaviors."
I am only 24 hours in but I am managing. I have already wanted to google at least a dozen things, so it goes to show you how bad it's been in my head this week.

But I've noticed that this forum has, over the years, moved toward senior members really pushing "you must help yourself" -- so I am sharing this to tell everyone, I am trying.
Thank God, I am finally trying!

[pulisa]

I think you should divert all your brain power and obvious intelligence into changing tack and channelling your mental energies into combatting your HA rather than feeding your HA with relentless "researching"/chasing "that" diagnosis which terrifies you but torments you with distorted reasoning.

You have the motivation to do it. You CAN do it. Listen to your therapist. You will really want to Google..You will feel you need to Google to retain that control but it's the very worst thing you can do. It's a very entrenched behaviour now but it CAN be broken with determination and support. You can never un-read Google so think of that every time you're tempted to just have a quick browse..It's just not worth the angst. Why do it to yourself? You can't know everything.

[kyllikki]

I agree very much, thank you again, Pulisa! From my perspective only 24 hours into the "challenge" of eliminating one behaviour, I think I can definitely do this for a week.
Longer term, I can see it being harder
My therapist says "reasonable goals only" for right now!

[pulisa]

I think a week's worth of "challenge" is "reasonable" but still very hard. You have your therapist to keep you on the straight and narrow though! I admire your resolve and determination to do your best this week and I'm sure that you will give it your all. It's a doable challenge and it gives you a defined focus.

[kyllikki]

pulisa I can't thank you enough for the support from afar, every bit helps. Not going to sugar coat it, it is hard!!
I have a check in with my MH person soon, before my weekly, so I do have the support. I am letting the thoughts occur to me and then just go, while successfully resisting the urge to google anything medical or seek medical reassurance.
My self checking behavior/somatic monitoring has EXPLODED because I have closed off one route for "information gathering" and my brain is channeling it into checking/hypervigilance instead --
which I know isn't good, but one thing at a time I suppose (Notably, my body wide twitching has come also come back... ugh.)

All my best

[kyllikki]

Well, back once again, trying my best to hold it together. I sent all my information to a specialist who only takes cases after review and... the office called back today to schedule my appointment. I was hoping they would simply reject me.
I am split: the doctor is literally an ALS expert.
Trying not to get ahead of myself.

Please pray for me -- appointment not until mid november.

[BlueIris]

Too much of an atheist to pray, but I'll send every scrap of positive energy I have in your direction. Thinking of you.

[jojo2316]

Did the neurologist you already saw refer you, or could you self refer?