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OK, so I've been freaking out about bulbar-onset ALS for 20 weeks now. I have *perceived* speech/swallow issues but no-one has told me I sound drunk and I haven't fully aspirated yet. My tongue continues to do its dance.
CAN I STOP WORRYING YET? I am tired of this merry-go-round and I wanna get off
What are you doing in real life to treat your anxiety over this irrational fear?
Positive thoughts
That's the thing, I don't think it's irrational. I think it's feasible that I have this and am too scared to see a doctor. At this point, living with the hope it's anxiety is preferable to having my worst fear realised. So I'm stuck :(
What are you doing in real life to treat your anxiety over this irrational fear?
Positive thoughts
Exercising. Eating well. Taking all the right supplements for anxiety. Looking for a CBT therapist, but there appears to be none in my area. I did purchase a very good book on Hypochondriasis, but as I am unable to believe it's HA I haven't read it yet.
---------- Post added at 09:41 ---------- Previous post was at 09:39 ----------
There were two "buts" in that last post :ohmy:
Thanks for your honesty. So you're in the US and despite the resources available in every state, you've not been able to find help? Sorry... I know for a fact that there is help available (https://www.mentalhealth.gov). I'll just leave you with best wishes that you find the inner fortitude to treat the real illness you do have.
Good luck and as always....
Positive thoughts
I will say this Melfish....The twilight zone you're living in....fearing the worst and hoping for the best....is actually a lot worse than learning and dealing with the truth.
Good luck :D
I live five hours north of San Francisco. I can't even find a PCP who's accepting new patients. It's a doctor desert. They simply cannot attract nor keep physicians in the area. It's an ongoing problem and one that may in the end force me to move.
---------- Post added at 09:51 ---------- Previous post was at 09:50 ----------
I will say this Melfish....The twilight zone you're living in....fearing the worst and hoping for the best....is actually a lot worse than learning and dealing with the truth.
Yep, and no doubt there a tipping point, which I'm sure I'll soon reach.
Would you believe the doctors though if they gave you all clear after relevant tests? Would you ever believe that your symptoms are benign and probably caused/exacerbated by anxiety?
I think I would. I don't know. I've never had anxiety/disease conviction like this before. The last time I had HA was pre-internet
I think I would. I don't know. I've never had anxiety/disease conviction like this before. The last time I had HA was pre-internet
That's very honest of you. Hope you do reach that "tipping point" soon and end this misery.
I suppose it boils down to whether you would believe a neurologist's learned opinion or your HA's perceived opinion?
---------- Post added at 19:31 ---------- Previous post was at 19:28 ----------
I'd advise you to bite the bullet and see a neurologist to voice your concerns. I don't think you are ready to address your HA because you are not convinced that you are solely dealing with this.
Hey Mel, I just checked amazon, and flutes are only 99 bucks and piccolos are 79. Maybe we should both buy one and take lessons? I've never learned flute. I can only play the reed instruments.
Hey Mel, I just checked amazon, and flutes are only 99 bucks and piccolos are 79. Maybe we should both buy one and take lessons? I've never learned flute. I can only play the reed instruments.
I can play the drums and Fishmanpa can sing! We can create a band called the NMP Wrigglers :wacko:
Kathryn313
07-10-17, 21:06
Read the book. You have nothing to lose and the time you are spending worrying can be used on reading instead.
Even you don't think you have HA, you could maybe learn something extra to advise those of us that do.
My neighbor had bulbar als.
He was diagnosed at the end of May and died early September. Progression was very fast.
I am reading The Gulag Archipelago instead. Cheering
---------- Post added at 17:44 ---------- Previous post was at 16:18 ----------
My neighbor had bulbar als.
He was diagnosed at the end of May and died early September. Progression was very fast.
What were his presenting symptoms? How far progressed was he at diagnosis?
MyNameIsTerry
08-10-17, 02:56
OK, so I've been freaking out about bulbar-onset ALS for 20 weeks now. I have *perceived* speech/swallow issues but no-one has told me I sound drunk and I haven't fully aspirated yet. My tongue continues to do its dance.
CAN I STOP WORRYING YET? I am tired of this merry-go-round and I wanna get off
You have no symptoms according to others. Setting a target date to believe you will be ok from when you have no symptoms in the first place, how does that work?
Can you honestly say if you get a neurologist saying you have no symptoms you will find your mind reprogrammes all this worry over night and accepts what you haven't been able to all along?
And you assume all that rewiring you've been doing in your subconscious that is not even connected to ALS will also disappear without any work? Why won't it seize on something else next?
And what if that something else can't easily have an end date? Take asbestos exposure as good example of this...do you wait 40-50 years?
I can play the drums and Fishmanpa can sing! We can create a band called the NMP Wrigglers :wacko:
Awww, I wanted to be the NMP Twitchers!
What were his presenting symptoms? How far progressed was he at diagnosis?
I'm sorry but I am not sure about that. I do know that he was fine, all of a sudden could not speak at all, he went down hill so fast it was shocking, then beginning of Sept he was gone. He was 58.
I'm sorry but I am not sure about that. I do know that he was fine, all of a sudden could not speak at all, he went down hill so fast it was shocking, then beginning of Sept he was gone. He was 58.
That's awful and too young :(
See? If you had it, things would almost certainly be a whole lot worse after 20 weeks. As a lot of people have said, this thing isn’t subtle, and you don’t need to go searching for it.
You probably know from reading my posts I'm a cancer and 2X heart attck survivor. When my cancer was diagnosed, it was local to where I live. Long story short, I got a 2nd opinion at Johns Hopkins in Baltimore. Being that JH is #1 in the country for Head and Neck cancer, it was a no brainer. I spent close to three months traveling 2+ hours each way for treatment. I've spent close to the last 5 years traveling every few months for follow up appointments. It's what I needed to do to get better.
I have real physical issues that can put me 6 feet under. In many ways, anxiety does that to it's victims. Living and worrying about dying isn't living. Life is so fragile and short. It should be spent enjoying the things that bring your heart joy. The rest doesn't matter. Read the quote in my signature.
You're hurting right now. Real life help would be so beneficial. I believe you know this. Is driving an hour or two to find a doctor that can help too much? What about face time? There are mental health professionals that offer real time face to face therapy over the internet. There's a link in my signature to a self help CBT course. I used it as a supplement to my therapy for some depression after my cancer. I still use some of the exercises as they apply to everyday life situations (work, relationships etc.)
This is an internet forum. Words on a screen. If it gets too much you can make it all disappear by clicking the little "x" at the top right of the screen then come back the next day when your anxiety ramps up again and talk about your fears some more. It's a vicious cycle. Ultimately, regardless of what's written, the solution lies in you having the inner fortitude to take the necessary steps to help yourself.
Good luck and as always...
Positive thoughts
That’s a wonderful post, Fishmanpa.
Right on the money. So many of us in here (myself included) would rather just get that nice, feel-good hit of easy reassurance rather than putting the work in to actually get better. Unfortunately that keeps us trapped in the reassurance cycle.
For my part I’m going to make an effort to get out of this thing. I’m done spending my nights carefully examining my hands a feet to look for muscle wasting. My appointment is on Wednesday.
Good for you, atl/
Melfish, it's up to you. Do you really want to spend the rest of your life like this? What would be your "rock bottom"?
Great post, FMP. Thank you
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