View Full Version : Every time I start to think positive...
Something just knocks me down. If you've seen my posts, you know I'm struggling with fears about bulbar ALS. My symptoms include my tongue feeling too big in my mouth, feeling like I'm struggling to talk (nobody notices), biting cheeks and tongue when I talk and eat, tongue quivering, constant phlegm in throat and too much saliva (dry mouth at times too).
Well this week I've been trying to set up a therapy appt to get help (which I've done in the past) and tried to stay calm while I waited to get that set up. My mouth was bothering me a little less but I noticed a lump in my throat sensation. I do have GERD which is treated but told myself it must just be that to avoid losing my sanity. Well today at work, I was struggling to talk (feels like I'm have to force words out Bc it feels like my tongue is touching my back teeth too much) and after a while my jaw literally was aching and throbbing. I'm trying so hard not to google if this is a bulbar symptom but it's eating me up inside. The jaw aching is a new thing I've yet to experience. I can't help but think it's a sign my muscles are failing.
Combine that with finally getting my appt set up today and it's not til the end of September. I don't know how I can manage all these issues until then. I really needed to see someone ASAP. :( It's so frustrating that when I finally accepted I couldn't manage this on my own anymore, that I can't get in for nearly 5 weeks.
ServerError
25-08-17, 00:02
Nothing you've said is remotely suggestive of this incredibly rare form of an already rare disease. I'll repeat that, because I think emphasis is warranted - nothing you've said is remotely suggestive of this incredibly rare form of an already rare disease.
Let's look at the issues you describe:
- "my tongue feeling too big in my mouth": This is classic hyperawareness of sensations. Right now, what you feel is not a reliable indicator of what is objectively true. Your tongue is fine. Your perception is off because you have anxiety and are focused in this area.
- "feeling like I'm struggling to talk (nobody notices)": If nobody notices, you definitely don't have bulbar onset ALS. ALS is a disease of failure. If you had it, and in this form, people would notice because you would be struggling to speak all the time, and it would not come and go. It would be worsening by the day.
- "biting cheeks and tongue when I talk and eat": Not a sign of bulbar-onset ALS. It is not suggestive in any way that the nerves in your face are failing, because you are able to bite and talk and eat. Our Lord and saviour, despite being utterly perfect and infallible in any way, got lazy with the human body. He gave us soft, flabby mouths, filled them with sharp things and made sure it was not just possible but incredibly likely that, in doing things vital to survival (such as eating), we would sometimes chew on ourselves. In the unlikely event I get to heaven, I'll ask him why he did that. Might ask him about in-growing toenails too, the swine.
- "constant phlegm in throat and too much saliva": These are entirely normal sensations. True, they can be worsened by almost always benign conditions, but they're nothing to fear. It sounds like post-nasal drip, coupled with skewed perceptions caused by anxiety. One thing's for sure, it isn't ALS.
- "(dry mouth at times too)": Another common anxiety symptom. Also a common feature of being human. Nothing to do with ALS.
- "I noticed a lump in my throat sensation": Globus hystericus - another common anxiety symptom. It drove me to full-on choking at one point, but it's nothing sinister. There is no actual lump. It's just awareness of the feelings and sensations of the neck and throat. Your history of GERD is also relevant here. ALS is not.
- "after a while my jaw literally was aching and throbbing": I'm not surprised! Given that you're convinced of a life-threatening illness in this area, it wouldn't surprise me if you're tensing your jaw and throat muscles and probably doing a lot of straining to "test" the area. Jaw pain and tension is - you guessed it - common in anxiety anyway.
Is your appointment to see a therapist or are you going to a doctor about the symptoms? I hope it's the former, as this would be the best thing for you at this point.
What's negative about having to wait? That to me is the most positive aspect of the post! Not because you have to wait but because you took that 1st step! Just by doing so you're light years ahead of doing nothing. Good going!
Instead of thinking OMG 5 weeks to wait, think how long you've suffered with your anxiety and it's "only" 5 weeks until you start kicking ass!
Positive thoughts
ServerError I truly appreciate the reply, honestly. My appointment is with a therapist. I struggle finding one I connect with and had a great one I loved in the past but she doesn't accept insurance. At $100 a visit, I just can't afford it. Out of kindness she used to see me at a very reduced rate but I started to feel like a burden. So I'm trying someone through my insurance and fear not relating well to her or liking her. I honestly don't suffer from any other type of anxiety or depression. I'm extremely happily married, love my job, love being social and spending time with people. But I'm incredibly afraid of dying and leaving the people I love most. I'm even more afraid of untreatable diseases that rapidly steal your life.
I know my symptoms sound so vague and possible to be caused by anxiety but I made the mistake of going to the als forums a few too many times and reading where my symptoms were sadly the first symptoms in this dreaded disease for quite a few. And many of the symptoms I had before I read about it, although admittedly some appeared after.
I have had HA since about 7 or 8 and at almost 38 now, I find this hasn't ever really gotten easier for me. Every time I think "but this time it feels real" and I desperately want to get beyond that. I very much appreciate the time you spent on your reply and I value everything you said. Thank you! And yes, I'm avoiding the regular dr Bc it usually just involves me not trusting their opinion, not feeling taken serious or I just move on to my next symptoms.
---------- Post added at 16:23 ---------- Previous post was at 16:21 ----------
P.S. I have not visited the als forums in days, maybe even dare I say a week. And I'm not googling symptoms.
ServerError
25-08-17, 00:42
None of what you describe is indicative of ALS, and it wouldn't raise any alarms with a neurologist. I imagine, however, that if I went on an ALS forum, I would find people describing things that apply to me right this second. Who's to say that the sufferer isn't mistaken or experiencing confirmation bias? It doesn't matter because anxietyis way way way more common than bulbar-onset ALS, and your symptoms are all easily placed under the anxiety umbrella.
Why would a doctor not take you seriously? The consequences for a negligent doctor who misses a serious illness are catastrophic.
All you can do is work with a therapist to confront this state of mind. So I wish you all the best with that. Please do stay away from ALS forums, for the good of yourself and those who are suffering.
All you can do is work with a therapist to confront this state of mind. So I wish you all the best with that. Please do stay away from ALS forums, for the good of yourself and those who are suffering.
Thankfully I have never joined or posted there...I know far better than that. I would never disrespect those suffering there. But for myself, yes I need to stay away.
As for a doctor not taking me serious....I had an insurance change in March and can't see my regular dr anymore. She knew about my HA and would reassure me I was ok while still being cautious she wasn't missing anything. My new dr through the new insurance was awful and literally made me feel crazy over legit health issues I have (as in diagnosed and not things I worry over). She was awful and changing providers isn't easy. She certainly would be a waste of a copay and my time. Therapy is def the best option for me, I know that.
My other issue is not waiting meds. I've gone that route before and would like to treat my HA without it. Hopefully it's possible.
It certainly is possible to manage HA without meds, breezie, but you have to help yourself by accepting the very insightful and helpful information given here by server and fishmanpa and not countering that by going on ALS/neurological forums or reading similar stories on here from people convinced they are terminally ill with rare diseases and then doubting your own resolve? You won't just suddenly be able to snap out of the HA mindset but you can avoid obvious triggers just to make things easier for yourself to begin with. Comparing symptoms and asking for reassurance on here isn't "support"-it just keeps those symptoms and hyperawareness at the forefront of your mind. Keep your mind on the therapy-maybe the wait will be a good thing as things may become less intense for you with less exposure to obvious triggers? I really hope so but you do have to make the first move.
It certainly is possible to manage HA without meds, breezie, but you have to help yourself by accepting the very insightful and helpful information given here by server and fishmanpa and not countering that by going on ALS/neurological forums or reading similar stories on here from people convinced they are terminally ill with rare diseases and then doubting your own resolve? You won't just suddenly be able to snap out of the HA mindset but you can avoid obvious triggers just to make things easier for yourself to begin with. Comparing symptoms and asking for reassurance on here isn't "support"-it just keeps those symptoms and hyperawareness at the forefront of your mind. Keep your mind on the therapy-maybe the wait will be a good thing as things may become less intense for you with less exposure to obvious triggers? I really hope so but you do have to make the first move.
Totally 100% agree with you! And I know all of this Bc I come from this field. I worked in managed care for psych and substance abuse for 10 years and its like I know exactly what to do, but putting into play myself is the hard part. I haven't checked the ALS forum for over a week nor have I googled my symptoms in that time, so that's a start I suppose. But convincing myself it's all normal sensations and carrying on with life is the part I can't seem to bypass. I know with all my other deadly fears in the past, eventually it passed but I've been known to suffer for 6+ months with symptoms (which are always causes by something other than what I fear and made worse by my hyperfocus on them). Praying this passes sooner than the others. And I've had years at a time where my HA is virtually nonexistent and I hope to get back to that point and never get here again.
On a good note, my other therapist said she'll talk to me Monday just to help me through until my appt at the end of September. Hopefully she can give me some tools to refocus my crappy thoughts. Just can't afford to keep seeing her long term.
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