Hi there

Doe

New member
Joined
Sep 14, 2020
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
SD
State
VG
City
Gothenburg
Hello there,

Hope everyone is enjoying their weekend and that you’re doing good despite the weird circumstances we’re all experiencing atm.

A little background about me. Male, scandinavian, in my mid-late 30’s.

I have been struggling to cope with life early on due to ADHD and OCD. Managable through episodes.

Got a huge relapse in my ocd about 6 years ago where I lost around 60 kilos in weight due to not eating or moving except from the sofa to the bed. The lifestyle was really breaking me down to bits since both muscle tissue, fat and circulation was affected really bad. Was living on yoghurt and SSRI more or less. Tingling, burning sensations, spasms in throat, weakness and fatigue, freezing, bad balance, bladder problems etc..you name it. Got it all due to that. Not that strange at all due to the circumstances.

Fast forward to this year: Once Covid-19 started I wanted to boost my immune system due to the situation. I started eating zinc and c-vitamines in my cereals every morning as heard that it might help a bit. An issue was that I had started to eat less now now again due to anxiety regarding the situation, food possibly being contanimated etc. So my diet was very thin. You get the idea.

After a while I noticed that my bladder problem had changed. Instead of having problems to start I now got sudden urge to go otherwise an accident might happen. Also noticed that I got a bit of change in my bowel movements and problems holding in gas. Thought it was stress related. The burning sensations on the back mixed with a chill continued.

The summer comes. By this time we have changed apartment and I feel a bit achy. I get offered a massage and cold laser therapy on the neck, shoulder, back/spine it as I thought it might give a relief. It did, but later on I noticed that my palms and feet were burning. Got another massage and she tries to crack the back, didn’t work out.

When I go to sleep that night I noticed that when I had my hands opened they wanted to shut and when I try to resist they fell ”asleep” and ending up in a cramp.

I try to lower back excercises, the tingling gets worse. I now notice that I have started to have fasiculations as well. Constantly. Especially on my feet and calves. I go to the doctor and they did a simple neurological test where everything was fine since. I lacked b-12 and folic acid. But the issues seems to linger and I can’t hold my fingers in a static position without starting to feel a tension that escalates to the point where it starts to move wether I want or not. The sore point goes from the neck down across the shoulder down all the way to the finger.

I have also noticed that the involuntary movements have escalated in my legs and shoulders. Especially when I am relaxed.

The symtoms get worse when I am trying to sleep. I get jaw spasms and spasms in my tongue, and some sort of sort of dystonic symtoms where I clench my eyes, turn my head fast like tics etc.

I am obviously out of shape. I’ve lacked sleep and have been stressed to the point of a breakdown for months.

I drop things some times too and saliva tend to get stuck in my throat some times and have done so for a while. Without caring or been giving it a deeper thought. I feel weaker in my grip and have terrible memory which got worse after the massage and laser therapy. And my big toes seems to ”click” within, like a nerve gets disrupted or try to reconnect when I don’t move it.

I have always been in good contact with my body which makes me wonder if I possibly devolped muscular dystrophy due to malnutrion and lack of acitivity and now got it evolved to or exacerbated it to ALS due to the zinc supplements, lack of minerals and acids, long usage of medicines, the massage and foremost the laser therapy which helps the muscles heal themselves on a cellular and mithocondrical level. Maybe sounds like a long haul? Any advice or suggestion? What I should test myself for etc..

Having an appointment with my GP next week again btw.

Sorry for the long text, I am a bit confused and desperate to find out what it could be besides people saying stress whenever they can’t find an explanation.

Have a nice weekend and take care.

Thanks in advance.

/D





/D
 

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
3,971
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Nothing you described sounds like ALS. It sounds like you got yourself run down, from not eating, and not exercising enough.

At this point, I think you need to see your primary care doctor so she/he can do blood work and make sure you are not deficient.

Start eating a balanced diet to include good quality protein, healthy carbs (fruit and vegetables) and good fat (olive oil, avocados, nuts and seeds.) Exercise daily. Do stretches, walk and make sure you drink plenty of water.

Your doctor will put you on the right track, I'm sure. But you don't belong on this site.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
8,882
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
...and maybe find more qualified massage/PT support.
 

Doe

New member
Joined
Sep 14, 2020
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
SD
State
VG
City
Gothenburg
Thanks guys for excellent replies and supportive answers. Meeting my GP in the next week.

It feels like the problems have escalated though after this whole massage episode along with the laser therapy. I have like buzzing feeling inside the nerves and my feet get very tight while I am resting and it feels like my toes contract or how to say. When I then move them it’s like a snapping sound. I also have myokima/fasciculations constantly in my feet and calves, like worms under the skin. I have aches which goes from the neck down via the shoulder, down inside the biceps along with pain from the brachial area down to the arms and fingers like a carpat tunnel syndrom. I mean, how many pinched nerves can you have? Haha. Seems like it is something nasty going on. Get this fast muscle twitches all over the body, just like one contraction. especially if I have used a muscle. I obviously have shrunken muscle mass due to the sedentary life style too.
When I relax I get this myoclonic jerks along with spasms in the left side in the face and forehead. Have had some spasms in the jaw too. Sometimes my eyelids contract as well.. and upper lip. I also think I have GERD too btw.. Having problems with acid and laryngospasms.. my vocal chords vibrated yesterday when I spoke, hehe.

Since many of you are very familiar with different types of neurologic conditions, I just want to hear your ideas of what could be going on. I am bit hesitant to work out if this will make the symtoms worse.

take care guys.

Oh.. and forgot to mention my fingers are like snapping if I clench my fists as well and they feel more stiff than before. I am dropping things easier once in a while etc..
 

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
3,971
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
I'm sorry you are worried. We are not doctors. We are here to support people with ALS and their caregivers. ALS is a terminal disease and some of us are typing with their eyes and totally paralyzed. Caregivers are extremely busy.

Please direct further questions to your primary care doctor.

I wish you the best.
 

Doe

New member
Joined
Sep 14, 2020
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
SD
State
VG
City
Gothenburg
Thanks Kim for your answer. I am sorry, it’s not my intention to create more anxiety than there already is. I totally understand. I will have to wait and evaluate. It’s a terrible disease and I am very impressed to the say the least how you keep fighting despite the condition. Take care.
 

Doe

New member
Joined
Sep 14, 2020
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
SD
State
VG
City
Gothenburg
A little update.

Was down at the local health care center and explained my symtoms to my GP and I noticed she was scanning me during the whole visit, obviously for signs before she started some testing. She did numerous neurological testings which the previous one didn’t do and checked reflexes, pulse, lungs etc.

I told her about the fasciculations, pins and needles, burning, tension, cramps etc and we had a long talk about life and she told me that I had no signs of neurological damage and that she would never give me a remiss to a neurologist since they would let me go after 5 minutes, hehe.

She was convinced that I was monitoring my body way too much and that everyone experience this stuff but a few pay attention to it. That this is breaking me completely and that I should be focused on living life instead. She has a point. I guess I should try to give this a rest and stop googling since I have way too much ”knowledge” about diseases, symtoms etc that I have no real experience from. Just wanted to share the update. Still get a bit worried about me ”dropping things” when not focused. Ah well.. I should probably let it go. That can happen for other reasons as well.

I am sorry if I have bothered you, it was never my intention. I was just reaching out for help and guidance. Should probably be working on my nosophobia and anxiety a bit more.

All the best to you guys, much love. Take care.
 
Top