really sorry to be back, need some advice one last time

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Jul 18, 2022
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Hello everyone,
I'm sadly back with concerns about my husband.

I know you guys are probably getting really really sick of me, believe me, im also getting fed up with myself. I’m really trying to let this thing go, but every time I do, something keeps popping up. I feel like everyone keeps dismissing me, because my husband is quite young to be having a disease like ALS (He's 29). And believe: I do realise the odds are with us in this. An yes: I’m being a hypochondriac right now, but what you must know is, I never used to be like this. I just truly think something is seriously wrong. I know my husband really well and things that have never even occurred before, keep occurring. Normally im the one to dismiss diagnoses like ALS, MS, Cancer or other terminal diseases Google diagnoses you with when you only have a headache. I know I must come across as anxious, and to be honest, this whole thing has made me quite anxious, but im also a rational person. I keep searching this forum, to prove myself his symptoms do not mean anything, but I keep finding stuff that’s quite relatable from PALS.

Also I know my judgement is clouded, so I try not to weigh in the symptoms that I notice myself, but purely the symptoms he tells me about.

  • It started on the 8th of July, we were talking with some other people and suddenly he couldn’t talk because he said his tongue felt thick or swollen, even though it looked normal. I had to takeover the conversations. This incident kept occurring at work or at home, just a few times a day. When he’d stuck out his tongue he saw tremors/twitches.
  • He went to his GP, he noticed weakness in his left arm and left leg and referred him to a neurologist, this was around July 12th.
  • He started having a tremor on the left side when tensing his muscles, but this lasted 1-3 days and went away. It occurred once again a month later when he was tired after driving to out holiday destination (2 day car drive) so we brushed it off to being tired.
  • He had an appointment with a neurologist on July 14th. She said his face was asymmetrical, but this disappeared when smiling. She did not see fasciculations on his tongue or anywhere else. She is not specialised in neuromuscular diseases though, but she was really thorough. He also had a positive Hoffmann sign on only his right hand. His CK levels were also elevated at that time, she said she did not know what he might suffer from. The day after is when my panic started: since she couldn’t give us an awnser, I turned to dr.Google, this was a BIG mistake and send me right into panic mode.
  • At this time he also started to have a twitching eyelid, arm/hand and twitching in the knees. This happend a few times a day I think, it was not constant. He did once make a comment about not being able to sleep because of them.
  • After we came back from our holiday where we were able to relax a little bit, the tongue incidents started to occur less, as of today he hasn’t had them for about a month I think. This is when I was able to slowly crawl out of panic mode. She had a follow-up appointment with the neurologist. His CK levels were within range, she tested his Hoffmann sign again and he now had them on both sides, didn’t seem to concern her. She also checked his tongue for fasciculations and that was that.
  • Around September the 2nd is when the coughing and throat clearing started, this still continues till this day. I’ts happening during the day and now more often during the night, it sounds like he is choking on saliva sometimes. Of course he doesn’t really notice, as he is sleeping. Mainly the throat clearing is almost constant. He also has a stuffed up nose all the time (but he’s had this in the past, his nose is a little wonky).
  • Around the 20th of September he started having episodes of headaches, dizziness and nausea, don’t know if it’s related.
  • The 2nd of October he is complaining about yawning a lot, they seem to be less frequent now though.
  • Around the 20th of October he started gagging more while brushing his teeth. He has always gagged, but now he started to actually vomit up food when brushing his teeth. Occurring about once or twice a week maybe?
  • He now also started having cramping in his right forearm, like the really painful ones, I think its called ‘Charlie horse’. (This wouldn't concern me if it happend in places he had them before like his calves) Happend about 3 times the past 2 weeks, he’s never had that in the 12 years were together. It’s also on the arm he’s had the positive Hoffmann sign first.
  • There is also a concerning change in his character and behaviour: he is really really paranoid, anxious, depressed. Mostly the paranoia scares me, almost like he’s losing reality sometimes, it scares him too. And he is having really bad nightmares almost every night (CO2 build-up, or is that a stretch?)
Believe me: I do realise it may be a stress, but I feel multiple PALS or CALS mentioning similar symptoms in hindsight. If he had been having these symptoms for years it would not have concerned me, but most are just occurring af of now. I really apologise for my frequent posting, but I feel like no one is taking us seriously because of his age and because it’s such a rare disease already. Really do not want to waste your precious time and I can really see how annoying I must be in your eyes. I really wouldn’t post here if I wasn’t genuinely worried, trying really hard to stay objective but I would really appreciate your objective input on this matter.

Does this sound like ALS at all to you? I really don’t want to waste a neurologist’s time if it is not necessary. Healthcare is pretty accessible here and almost everything is insured and I don’t want to take advantage of it, since I know there may be people really needing those appointments more.

Really sorry to be such a pain in the ass, feel free to just ignore my annoying post, cause i know ya'll have other things on hand. I did start mental help for myself, cause this has been making me feel like i'm crazy, just so you know im working on it. We've had so much going wrong lately, and i just really need him with me.
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What you were asked the last time was to stop researching and posting here and if your husband was still concerned, he should visit with his doctor. There is not anything more this forum can do for you except to recommend medical attention if you are very worried about his health. The doctors are who can provide information about his symptoms and their observations based on a clinical exam.

Perhaps once he has visited a doctor and had an exam and had his questions answered by a medical professional there will be more clarity for you. It is very difficult for people here to provide any more in the way of information. You've received many answers already and anything else is simply outside the scope of this forum.

Please sit down with your husband and work out your questions and list your concerns- and if he is also concerned, he can seek medical attention for himself. If you both have further questions after he has seen a doctor, then a post here asking specific questions about the clinical exam/doctor's findings would be appropriate.

Please take care.
Please stop posting here. Print out all your threads and show your husband what you've been asking of terminally ill folks. I wonder what his reaction would be? My guess, not very good.
I'm going to try and say this gently - maybe your behaviour with this obsession on his health is causing him to seem paranoid and anxious. I can't imagine having someone put this on me constantly, it would drive me to despair.
You need to stop, you have been asked so politely and we provided you so much support.
You have worn out your welcome here.
You need to see your doctor alone and ask for help, you may be working on it, but you are not changing your behaviour really.
I think it has all been said as much as we can. It is up to the doctors. you implied at one point that is telling you it if the doctors didn’t see ALs we didn’t either that that somehow delays his care. That was ridiculous. We have no influence on doctors. It is up to your husband and you to seek care. Please do so. Closing thread now
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