Some updates.

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Doe

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Joined
Sep 14, 2020
Messages
11
Reason
Learn about ALS
Diagnosis
00/0000
Country
SD
State
VG
City
Gothenburg
Hello all, a while back I posted a thread regarding my condition/symptoms.

I have been in a very bad place mentally where my family decided that it was time for me to get help at a psychatric ward as I was more or less psychotic due to mental stress and excarbated symptoms. Got some help there and they evaluated my condition and I did a gastroscopy where they found a hiatal hernia and an inflamed colon. Still waiting for the results of the inflammation.

Hoping to get an appointment with my GP again since my symptoms doesn’t improve. I literally have fasciculations everywhere as soon as I raise my arm for an example. My shoulders are very very weak. Same with my knees. They get exhausted very easily, and I shake very much in certain positions, especially when I walk down the stairs. Like a tremor so to speak. Get those in my as well.

Getting cramp like sensations, especially in my feet and my feet lock up some times. Intercostal and ribcage spasms and tightness there, might have an inflammation there as well. The buzzing feeling in my hands have I adressed to my fasciculations in my instrinct muscles in my hand.

But what really bothers me now is that I can’t feel when I swallow anymore. It’s like the receptors within have been damaged. This happened after I did an movement which involved my chest area. It literally felt like I broke something in there and my GP told it’s literally inpossible. But I don’t know.. something has happened. Could nerves be so brittle that they can snap off or so if you push your body in an awkward position?

I am still convinced I have this disease, but my CK levels are normal, so are my thyroid levels. My liver and kidney status were almost perfect which makes me sure this is of a neurological nature, als that is.

Some feedback would be appreciated. Do you think I should push the GP more to send ne to a neuro? Last time she said she wouldn’t due to the lack of evidence.

Take care all. Hope you’re doing well.
/D
 
To point out, I have had swallowing/dysphagia issues for a while. Started out as a pseudodysphagia several years ago due to my ocd, where I was terrified to choke which made me stop eating. But it seems like it developed to the real deal.
 
Hi Doe,
If you really couldn't feel yourself swallowing, you'd be choking on every swallow. Obviously you have some GI issues. I would wait for those to get sorted before re-evaluating your swallowing. Nerves cannot snap off as you describe; they can lose connections due to trauma such as an accident, but I have never heard of chest movement causing such a thing. They're pretty tough.

I don't understand why having normal kidney, liver, thyroid function, as most people do, would give you the impression that you have ALS. You haven't said anything that would give us concern. If your body is fighting inflammation, that can certainly make you tired, feel weak, etc.

So I can understand why your GP isn't inclined to send you to a neuro. But anxiety around ALS can be treated. That and the GI issues seem most important to work on.

Best,
Laurie
 
Thank you so much for your reply Laurie, much appreciated. Yeah, it may sound a bit odd, but I have always been in tune with my body, hyper aware to be more specific. The sensation has been decreased, that would be a more accurate word to choose. I can still swallow even though something feels impaired. I tend to bite my cheeks when I eat a lot. I have also twitches under my chin and on the neck. The tongue seem to only give twitches when I engage it, all though I might have seen a blip or two contractions during rest.

The thing is that I am starting to get worried that I have the bulbar variant. The reason is that last year during december I developed dysphonia with phlegm, that lasted for about 2 weeks and then it slowly subsided. I have also had a wet voice and been coughing after every meal earlier this year, which seems to be here to stay, since I often have to clear my throat.

The trapezius muscle is very weak which also is related to bulbar involvement as far as I’ve understood.. and I have quite a lot of atrophy, from malnutrition and lack of activity I guess (hope). Especially on my back.. and I had a partial subluxation earlier this year while sleeping on my side/back. The instability seem to persist. This and all the twitches, weak knees, body wide twitches, the calves and feet 24/7, cramps etc.. (Had very easy to end up crying here a while ago as well, though it was managed with SSRI now.) All of this have made me very suspicious and corncerned.

Haven’t had the results from GI doctors yet, but they are probably giving me the results very soon I hope. I will try to evaluate everything, but I am not very hopeful to say the least.

Hope you all have a lovely holiday. Merry christmas. Take care.

/D
 
And thanks, I am trying to work on the anxiety issues. The problem is that I am not very anxious at the moment, a bit stressed and depressed due to the circumstances but I have no panic attacks anymore. Recently started on Sertraline/Zoloft as I mentioned.
 
Hey all! I contacted a person that works with functional medicine. She did some bloodwork and checked my minerals, heavy metals and vitamins.

I was low on vitamin b’s and e. Copper was lower. Iodine was low as well.. and I had higher amounts of lead, mercury and arsenic than the rest of the toxic metals. I am kinda puzzled how to get out of this. I eat and still I seem to not absorb enough, all though I must change my diet.

I mean copper is in everything right? same with vitamin b1. I am a bit scared now since a lot of those minerals and vitamins I lack + heavy metals are related to development of ALS..

Any thoughts would be appreciated.

Take care.
 
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