tongue twitches, think tongue, scared of bulbar ALS

affected

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Great news, let's hope you can start to relax and your husband too!
 

Scaredwife

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I’m back again, Thursday is our follow-up appointment and I fell down the rabbit hole again. Partially because not all the questions had satisfyingly awnsers.

My husband has a positive hoffman-tromner sign on only his right hand. I know healthy people may have a positive reflex, but when it’s asymmetrical there is more chance of it having to do with a nervoussystem dysfunction. I don’t know why the neurologist didn’t see any red flags in combination with his tongue twitching and now twitching in his eye, knees and hand, but only occasionally lasting for about a minute. His eye twitch was more persistent.

His tongue problems seem to have lessened. Though I sometimes feel like he doesn’t articulate like he used too, like he doesn’t finish his words. He has also been clearing his throat quite often.

Noticed he kind of swallows air if that makes any sense when breathing in deeper. It’s quite loud but he doesn’t do it when he’s asleep. It’s like when someone scares you and you take in a deep gasp/breath.

Also in 2021 his blood got tested cause of chest pain. It showed low kreatinine levels, which could indicate a decrease in muscle.

CK was tested again and was now within normale range, that calmed me a little.

I’m just worried sick again, things just seem to add up and it doesn’t look like they’re coincidence’s anymore.
 
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Bestfriends14

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I'm so terribly sorry that you are doing this to yourself. However, the fact that you have fallen down the rabbit hole is not incumbent on the folks here to try to pull you out of it. That is for a professional to do.

I really don't have much to say in response to your list of non-ALS symptoms, but really just to step back and look at what you're asking folks here to do for you. The folks here have been diagnosed with ALS and you've been told repeatedly that your husband does not have ALS. How fair do you think it is to continually spill your run away thoughts to terminally members?

Please, print these posts out and show them to your husband's doctor so they can help you get past this unfounded fear. Just an aside, my tongue twitches all the time. It's what tongues do because they are the strongest muscle in the body. That's why every single person on the planet has a tongue that twitches. You do, too.

Best of luck to you and take good care.
 

Scaredwife

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Thankyou for your kind response, it gives me some peace of mind to know you don’t see any ALS signs.

I’m just thinking like, how many symptoms can be a “coincidence” untill it’s not anymore. The internet tells me a one sided Hoffmann sing is a red flag and she says otherwise.
Our pcp told us he found weakness on the left side and the neurologist did not see any weakness. I just don’t know who to trust anymore, which is why I come here. So really, from the bottom of my heart, thank you all for your patience with me.

I only asked the neurologist once over the phone, but she is not specialised in this area. She is specialised in memory issues, which is why I’m hesitant to comepletely trust her.

I know she’s probably more capable than I am, but I just have this gut feeling. When it’s about me I’m normally not stressed at all.

Also I do have tongue twitches, but his affect his ability to speak when it happens. When I stick mine out it will also twitch. The episodes of his tongue twitches or tremor did not happens since we got back from our holiday though. I don’t know if twitches in ALS are 24/7 or just occasionally.

My husband and I have been going through a lot lately and I just can’t imaginening losing him, he’s all that I have. Wish that I never googled this, and I’m so very sorry for everyone that’s going through this. I’m just so scared of losing the love of my life, and I’m so very sorry for everyone who has.
 
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affected

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To be fair to yourself and others, it is really time you stop posting here until you have actual test results or diagnosis to report.
We truly sympathise, but your gut feeling is not clinical evidence. Please understand, you are asking the terminally ill, or those caring for them (which you fear to become) to stop and reassure you over and over. You might need to consider a doctor appointment for yourself, explain your huge fears and anxieties and get some help for yourself.
I keep feeling so sorry for your husband having all this extra anxiety and fear dumped on him, on top of whatever he is feeling and fearing. Please get some help, but it's not here.
 

Scaredwife

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Hello everyone,

I hope you and your loved ones are all doing well, considering the circumstances. Here is another update from me. We visited the neurologist yesterday and she was really sweet. I told her my concerns about the assymmetrical hoffmann reflex on his right hand and she tested his hoffman reflex again and said right and left were symmetrical. Also his CK levels were now normal, they may have been higher due to the medicine opremazol he takes.

She also checked his tongue again and said there were no differences compared to when she saw him the first time 2 months ago. Still no fasciculations, which probably means that the twitches he had in his tongue weren't fasciculations. I'm still a little bit nervous though about him having the feeling of a 'thick tongue' and not being able to talk when stressed or angry. That's mostly due to me reading about someone having similar symptoms and ending up having ALS. Think i read it somewhere on this forum, not quite sure.

I am quite a bit calmer but a little bit of anxiety still remains though. My only fear is: was his hoffmann reflex symmetrical the first time but did she miss it because it was so minor, or did the reflex increase and now also occur on his left side, which would not be great. But that question did not pop into my mind during the visit, unfortunately. I'm trying to let this go, since the neuro did not see any warning signs and said the reflex was very minimal. I truly regret diving into Google, not knowing is sometimes better.

She said she did not see any indication for any muscle disease, including ALS. She said she was confident letting him leave the office yesterday and not making any follow-up appointment. I know I should see this as a very good sign.

Also i do realize getting this disease at 29 years old is already very rare, let alone it then also being the bulbar variant, which is even more rare since young-onset usually starts in the limps. And it then aso being rare for it to start with twitching instead of weakness and going 2 month without progression, hence it's even getting better.

Sometimes i felt like he wasn't speaking clearly, but i know my judgement isn't objective anymore. No one else notices anything slightly different about him, so I know i really need to let this go. My stress levels have been so high lately it's almost like I can't relax anymore. I'm almost afraid of being relaxed and forgetting about it, cause i'm scared it will hit me in the face a few months from now, as if I want to be prepared. I know there is no possible way to prepare for a disease like this and I should be happy that at least for now, there is no sign of ALS. What happens in a few months from now is always a mistery and I know anyone can develop this horrible disease. I should just count my blessing that at least for now he is in the clear, which I know al lot of people on here can only wish for.

I truly truly emphasize with all of you going through this and still finding the strength to comment and reassure people on this forum with everything you have already going on. I barely made it to my school and job these past 2 months and i really look up to you guys. I appreciate the time you take to help and guide me, even though i'm just a stranger on the internet.

I hope i will not be back here, though i probably won't be able to let it go untill about 4 months from now, but i know that's my anxiety speaking.

thankyou, from the bottom of my heart.
 

affected

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Thanks for the update. You don't say that you have sought help for your anxiety and how you project that. I truly hope you get professional help so you can both navigate back to full health.
Congrats on the recent examination, please believe it. If you can't go to your doctor rather than here as that will give you the kind of help you truly need. All the very best.
 

Scaredwife

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Thankyou for your reply,

I do have to say that I find it hard to kind of get out of this adrenaline rush I’ve been in for the past 2 months.

I still notice some minor symptoms like mouth breathing with very quick and rapid sighs, and sometimes mumbling, and also the chest pain that makes me think about esaphogus fasciculations, or having side pains that come and go. Even if it was ALS, the neuro is not able to diagnose it as of now, which I should count as a blessing anyway. What will come, will come, i realise I have to live in the here and now, and right now he doesn’t have ALS.

I gave myself a deadline, that when I’m not able to put it to rest within a week, I will seek for mental health. It’s just that, this man is the most important person in my life, and I’m scared to lose him. I’m afraid to be alone and to feel that pain, it catching me off guard.

Truly you guys were a comfort to me, and if there is a way to return the favour I would really love to do that. Never really heard of this disease beforehand and it is truly awful. Praying they will find a cure for anyone having to deal with this.
 

Bestfriends14

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I really think you should stop posting. Don't wait a week for help; you need it now. You cruise these forums hour after hour. What must your poor husband think? The poor man, you are putting your fixation on him; what stress he must be under as a result.

You have a healthy spouse, which the caregivers on this forum can not say the same. Leave the poor guy alone, will you? Go get help and be grateful for the health that your husband has, because right now, you're not grateful. You're wasting time on a disease he doesn't have.

Block this site but before doing so, print your posts, take them immediately to a professional, and work to get to the other side of your incredibly unhealthy fixation. For your own good and for the health of your marriage.

I wish you nothing but the best. Take good care
 

Scaredwife

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Thank you for your reply. I wanted to come back here and give you all an update, so future members with health anxiety may alsnog benefit from this.

I realized how strong the mind can actually be. I was convinced my husband was breathing differently by taking a sigh/gasp every two minutes. Everybody takes a deep breath in between, but his were more prominent that normal. I recently found numerous videos of him breathing/sighing the exact same way from around 1-2 years ago, and I now realize how much of it was in my head. He has always been breathing like that, and if it were ALS related, he would not be here right now.

Also he says he’s feeling alright since we came back from holiday. Actually his symptoms of the tongue almost started coming back because of my nervous breakdowns.

I want to sincerely apologise for wasting your time as I now realize he may have had issues, but nothing ALS-like. More likely stress related, since ALS doesn’t come and go and would probably get worse after 2 months, not better.

The mind truly is a powerful thing and I’m finally able to put it to rest now. You guys have been a serious support to me during this time, which I would not forget. I would like to keep supporting ALS studies and foundations. Any tips what I could do best to support? I realise how less this horrible disease is talked about or discussed. Everyone know how horrible cancer is, where most people do not even know about ALS. I did not know much about it either before al off this happened.

Truly, I wish you all the best. You have no idea how much you opinions have meant to me. Thankyou for being blunt and honest with me, it is truly what I needed. If there is any way to return the favour, please let me know.
 
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