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chris88

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Learn about ALS
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Utrecht
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Utrecht
Hi all I've been reading for a little bit and am wondering if anyone can give me some tips (as many here). I've done a bit of reading but am still left with a few questions.
I'm male 26yrs fairly thin posture. Used to be 66kg dropped to 60,5 now 62/63.

How fast does the onset of symptoms occur?
Can certain symptoms go away and come back?
Can you have dizzy spells and a feeling of lack of control and a sort of hazy foggy brain feeling?
What does a cramp feel like?
Have any people felt a sort of rushing feeling as initial symptoms?

I just travelled South America and returned home being sick. I have been going to doctors and neurologists atm.

It's hard to indicate when it all started and what to count but here goes.
First sign, don't know if true or false, started twisting my ankles often. Also when walking my knee or hip would hurt. At the moment all my joints grind and crack really badly and sometimes are pretty painful.

Then first real moment of feeling crap was when walking Machu Picchu. Started to suddenly get real dizzy spells and the feeling of loosing control combined with a really weird rushing sensation through my body.
After lying on bed and pushing on this disappeared in two days.
After another 2 weeks I experienced this sensation again but after pushing through and doing hikes it disappeared again.
Then when I came home about another 3/4 weeks later I got it again.
Went to the doctor and the whole circus started.

Was checked in a tropical clinic, all negative.
Also got checked and vacined for rabies as a dog snapt at my finger, negative
Got a CT scan, negative
EMG negative
Lung/heart photo negative
Blood tests, all sorts, negative
Parasite checkup negative
Lumbar punction, first one showed an infection. 8wk later one was clean.

My symptoms (all fluctuating a lot but pretty much stayed for the last 2 months now. During the day when moving around not too bad):
Strange rushing sensation through all of body and weak legs
All started feeling week now.
Really bad cracking joints
Dizziness and cloudy brain
Loss of weight
Difficulty sleeping but disappeared again
Waking up extremely tired, some mornings really need to switch on use of limbs
Twitches all over body (some times they feel deeper now, and as s sort of electrical shock feeling)
Sharp sudden single needle stabbing sensation shooting through body.
Some times a burning sensation on skin
Sort of cramp without actually cramping, like a complaining tense feeling of my muscles.
Sudden feeling of spasm without actual movement of the body.
Some times I feel like breathing is difficult, like I'm not breathing deep enough.
Ringing/rushing ears

I'm not experiencing any of the real typical symptoms though tripping, falling, dropping stuff, slurred although I have lost weight and feel really boney and everything does cost a lot of strength and wake up in mornings absolutely knackered.

Any of you guys any tips?
 
Happy for you. You found the wrong forum for what ails you.
 
Thanks for the comfort! :)
The father of my married on nephew had ALS hence making the connection.
What do you base your conclusion on?
 
>Any of you guys any tips?

Morning, Chris --

Well, the good news is that these symptoms do not sound like ALS to me (and I am no doctor!).

The last time I was in Jo'burg I came back with a killer respiratory infection. I have heard of others with similar 'tropical'-like hard to diagnose symptoms.

Stay rested, follow up with the docs. Best of luck to you!
 
Clean EMG means it's not ALS.
All of your pain and sensory symptoms say it's not ALS.
None of your symptoms sound like ALS.
Best advice, follow Max's advice.
 
Any of you guys any tips?

Hi Chris, thanks for posting good details about your symptoms.

Allow me to pile on: Nothing you wrote sounds like ALS.

A clean EMG rules out ALS.

As a frequent traveler myself, I often picked up the local virus or bacteria in my gut. Sounds like you have picked up an infection, not ALS. This is not the correct website for you. Work with your doctors, now.

Good luck to you.
 
Thank you so much for your replies guys, I really appreciate it so much and has helped suppress my worries a bit more. It is such a scary time for everyone not knowing what's wrong with them but a good time to reflect on life!

The things that scare me the most are:
- They seem to not be finding anything wrong with me. Nothing in the blood, spinal fluid anymore, feces. Even a tropical disease clinic checked me out.
- I've become really skinny and boney over the last three months (but over all my body at the same time, mostly arms and legs)
- This rushing buzzing sensation comes and goes. first causing me weak legs two months ago which is still there but also causing me weak arms now.
- Waking up completely tired
- I sometimes got electrical shocks shooting through my body
- Having the feeling of a less movable/crampish like right ring finger and same "ring toe".
- Started to have troubles with the joints of my ankles. first twisting one about 7 months ago. Then also twisting the other shortly after. also having issues with weak hips and knees. and all making a grinding noise and feeling loose. But then again it has seemed to go to all of my joints by now and I've always had slight joint issues (not of this magnitude though)
- The EMG was the sticker and not needle type. might not be accurate enough?
Does anyone know if you actually need to be twitching at the time they take the EMG?

What is keeping me calm:
- no asymmetrical things going on except for first heavy legs now arms.
- I have been lying down so much last two months that this itself causes muscle degradation.
- I think the boneyness is also complete lack of fat.
- Having dizzy spells, stomach pains and nausea too
- Not actually lacking force, tripping or dropping things
- The muscle twitches seem to have gone down a bit
- Knowing some symptoms like the twitching can be post viral and anxiety driven.
- Having a clean EMG

I'll just have to work with this and see what the outcome is. Thanks again so much for your support, you're so nice for wanting to help yet the next fair full stranger, and my thoughts are with all that are struggling in times of fear and battle.
I will let you know the outcome, in case my story helps someone else too to get rid of their fears.
 
I was wondering if there's a way to edit my post. Seem not to be finding it.
What I wanted to add on is that I do feel less coordinated in both of my arms too. But yet again this can be the lack of use perhaps.
 
Chris, to answer your recent questions:
No, you do not need to be twitching when you take the EMG.
ALS does not involve "feeling" or sensing something, it's a total clinical weakness where you lose the use of some part of your body. It never comes back or gets better.
Noticeable muscle atrophy comes only after the muscle has been totally paralyzed for months.
From what you describe, I would expect that you can't walk or move your legs at all--if it were ALS.
You list a lot of symptoms, but I don't see ALS in there.
Come back after your doctor has diagnosed you. We'll be happy to help you then.
 
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