View Full Version : ALS fears creeping up on me again.
I got "sick" about 2 years ago. I had been having really bad migraines and I just woke up one day with widespread pain in every joint and bone in my body, this was followed by muscle twitches and spasms. I'm a life long sufferer of heart burn so I was sent to a rheumatologist for autoimmune testing and was told I could have lupus after one blood panel however the lupus panel came back all clear. I've seen a neurologist, brain & spine MRI clear he said it's a combo of migraines and anxiety. Since then I've had problems with my vision I see auras in my left eye. I've developed vertigo. I also developed difficulty swallowing. Every time I swallow my ears pop this has been constant for a year now. Over the last few days I began noticing that I have an excessive amount of saliva in addition to my trouble swallowing and clicking in ears and I am now going through a downward spiral worrying about ALS. I emailed my neurologist and he said to see an ENT that it wasn't neurological related, but I can't get rid of the fear that he is wrong.
Please read this... (http://www.nomorepanic.co.uk/showthread.php?t=196071)
Positive thoughts
90% of the symptoms you listed aren't even ALS symptoms.
HoldingoutforHope
29-06-17, 02:42
What you have listed isn't related to ALS. Anxiety makes you very sensitive to the movements that your body makes, and what does anxiety classically do to your muscles when you are stressed? Twitch. Twitching alone is not going to lead to an ALS diagnosis.
Hey,
Apart from recommending that you click the Read This link somebody else posted, I just thought I'd say that I completely understand. ALS is one of my 'big fear' illnesses (I think everybody with HA has a couple), and for the past few weeks the fears have been exacerbated.
June is MND awareness month, so you are likely to see advertising and similar about MND around the place. I've noticed these ads cropping up in June the past few years, and it always ignites MND panic in me.
Stay strong, my friend. I know it's absolutely dreadful, but you will get through this.
The problem is HA sufferers seem to fear ALS without having any idea how it actually presents. Pain, twitches - nothing to do with ALS.
It's like it's a big bogeyman of a disease we sometimes attach to any odd symptoms, even ones that have little or nothing to do with the disease.
I emailed my neurologist and he said to see an ENT that it wasn't neurological related, but I can't get rid of the fear that he is wrong.
I think if anyone can recognise neurological symptoms, it would be a neurologist...
The problem is HA sufferers seem to fear ALS without having any idea how it actually presents. Pain, twitches - nothing to do with ALS.
It's like it's a big bogeyman of a disease we sometimes attach to any odd symptoms, even ones that have little or nothing to do with the disease.
I think if anyone can recognise neurological symptoms, it would be a neurologist...
I think I have a hard time trusting my neurologist due to bedside manner. He comes across really dry and not very compassionate. I have other doctors that I trust completely just because they make me feel like they listen and are really attentive. So while, yes you are right he would know I always second guess his knowledge because of his demeanor. I try to remind myself that the likelihood that he missed something is so small for comfort sometimes. My Mom has also pointed out to me that his reassurance should be comforting as it is a medical liability to misdiagnose, ignore me, and reassure me I don't have a debilitating neurological disease. I also accidentally came across a bad review of him while trying to log onto the patient portal and it has stuck with me. Trying to get over it. I've thought about seeking a second opinion but I have medical debt up to my eyeballs
---------- Post added at 22:40 ---------- Previous post was at 22:37 ----------
Hey,
Apart from recommending that you click the Read This link somebody else posted, I just thought I'd say that I completely understand. ALS is one of my 'big fear' illnesses (I think everybody with HA has a couple), and for the past few weeks the fears have been exacerbated.
June is MND awareness month, so you are likely to see advertising and similar about MND around the place. I've noticed these ads cropping up in June the past few years, and it always ignites MND panic in me.
Stay strong, my friend. I know it's absolutely dreadful, but you will get through this.
Thank you and this is true. Every time I go through these cycles of feeling off and questioning test and diagnosis it throws my life into havoc. It is such a dark place to be in. It's nice to know I'm not alone
---------- Post added at 22:57 ---------- Previous post was at 22:40 ----------
It has been a few days since I've posted this, I have calmed down...mostly out of exhaustion. My husband and I sent our kids to my Mom's over the weekend so we could do some home improvement projects and I was so physically exhausted and mentally exhausted from worry I just said I give up. If I do have something like ALS I would spend my last bit of life with my precious husband worrying myself sick over something I can't control. It's strange how the irrational and then rational thoughts come with anxiety. I'm feeling better, but I know the fears will return and I will have to try to calm myself again.
This bout of anxiety came on because of ear problems, difficulty swallowing, and drooling. Are these things actually happening to me? Yes. Am I hyper focused on them and making them worse? Yes. I just keep trying to do my best to remind myself I've had some weird painful symptoms and they have all come and gone surely these will come and go too. Are there fellow twitchers here? I had twitching in my ears this weekend. My ear drums literally had spasms. Anyone else had that? I also occasionally get horrible pain in my tongue, my tongue feels stiff and so painful that returned today.
I'm glad you're feeling better.
Yes, those random symptoms all sound like they're either being caused by, or they are being exacerbated by, anxiety. Anxiety produces a greater variety of symptoms than any other condition I've seen.
I sometimes find it helps to remember that our bodies are extremely complex and sometimes there will be a section or part that hurts or twitches for no reason at all, and that that's perfectly normal.
I wanted to add to this in case another anxiety sufferer comes across this post. Guys, my wisdom teeth are cutting through my gums I just realized it a few days ago.. I'm 28 years old & have two young children and know what it was like when they got new teeth. I'm sure that this has everything to do with my increase in saliva. Anxiety is awful. I literally convinced myself due to other symptoms that I had a fatal neurological disease. I feel so ridiculous. Hope this helps someone else.
I wanted to add to this in case another anxiety sufferer comes across this post. Guys, my wisdom teeth are cutting through my gums I just realized it a few days ago.. I'm 28 years old & have two young children and know what it was like when they got new teeth. I'm sure that this has everything to do with my increase in saliva. Anxiety is awful. I literally convinced myself due to other symptoms that I had a fatal neurological disease. I feel so ridiculous. Hope this helps someone else.
You're in good company of people who have convinced themselves of equally daft stuff, so no need to feel ridiculous! Glad everything turned out OK.
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