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Neveralone

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Marry Christmas Everyone!

Sorry for the long post and bad English. To know my story you have to know a bit of my background.

I was born in the Congo and lived there until age 7. I just turned 30 and things haven't been going to well personally to be honest. As you may or may not know, Congo isn't really the greatest place for a child to grow up. I've seen a lot of things no one, especially a child should ever see.

About 2 or 3 years ago i started going through therapy mostly to battle my past. My therapist quickly diagnosed me with PTSD, anxiety and she even thinks i suffer from a chronic hyperventilation. After i told her about being dizzy. If you know a bit about hyperventilations. It comes with A LOT of scary symptoms. So about 6 months into my therapy sessions i started having this strange forever lightheaded / dizziness. It literally felt end still feels like i'm walking on a cloud or i'm on a boat somewhere in the middle of the ocean. If i move my limbs for example when i'm lying in my bed, my body literally feels like i'm being pulled down. Think about walking on a swimming pool cover. This strange sensation went on for months and months and never really disappeared. Although i had times where i barely felt it. Some other times it feels like i'm about to loose my balance. A constant hazy, blurry, foggy, dizzy feeling.

But after a while i kinda got used to it. So much so that i even started forgetting about it. I did have an MRI, ST SCAN and 2 EEGs which all came back negative. Nothing to worry about. That was the first time i saw my Neuro by the way.

Fast forwards a couple of months, i remember walking home one day suddenly feeling this severe muscle pain on the outer side of my right foot. I would say my right foot has been my "hot spot". I was having so much pain that i couldn't even walk. Went to my doctor, he looked at my foot and didn't really notice a lot of trouble. He quickly dismissed me. I'm not to sure but i think when i first saw my doctor i was also already having these strange muscle jerks on the inside of my right foot. And if not, it wasn't that much later that i returned to my doctor for the strange muscle jerks. Again, he looked at it and didn't really seem to worry about it.

The muscle jerks kept going for a least a couple of days so i decided to go to another doctor to get a second opinion. She took it a little bit more serious but kept insisting me that it wasn't much to worry about tho. Even though she did decide to take some blood for testing after i showed her the movement in my feet. Just to be sure.

At that moment i wasn't thinking about the fear of ALS or anything MND related. Until a couple of days later at the strangest most random moment. A doctor on a tv show i was watching told the main character that she was diagnosed with ALS. I didn't really think much about it just because i just didn't know much about ALS. Until that same doctor told her that cramps were part of the first symptoms.

Wait a minute! I suddenly remembered that my big right foot toe has been feeling crampy on an off for at least 2 years. It doesn't really cramp on it's own but the slightest wrong movement i make it has the tendency to cramp. That's when i made the horrible mistake googling "cramps and muscle jerk solutions". I was bombarded with the most scary outcomes. From MS to Parkinson, ALS....just...wow! :shock:

Things went in overdrive. My foot started doing the most crazy and scary things. From muscle jerks on the side of my foot to muscle pushing on the top of my foot, toe twitching, tingling, pins and needles. I even got this strange tiny little buzzing sensation between my toes every time i planted my foot. Pops like a popcorn machine and so on. Once i had a pretty serious panic attack where i felt my this crazy muscle twitch/jerk exploding in my cheek. It literally felt like a bullet hitting my cheek without the pain. And my toes started doing this wave like thing.

The strangest thing about my symptoms is that it never came or comes all at once. My foot symptoms all came pretty much after one and other. I could be feeling muscle jerks for a week or 2 to then disappear again feeling nothing at all just so something else would appear and then disappear again. Some of my symptoms never even returned. Only the popcorn like pops and sometimes this strange moving feeling at the side of my foot, which makes my big toe do all kind of uncontrolled stuff stayed.
But it's not like its happening 24/7. My symptoms also only seem to appear when i'm laying down or just when i'm not in motion. I don't really wake up from my symptoms. No cramping. Although i did wake up once from a night mare and remember my foot kinda reacting on it. I woke up and felt the muscle or something on the top of my right foot jerk for a couple of seconds. Sometimes i wake up seeing black dots for a couple of seconds. Or one my fingers still sleeping

Now here's the crazy thing. I've seen 3 different Neuro's. One of them even being head of the neuro department. Specialised with MS. Also about 4 or even 5 "normal" doctors. My last Neuro appointment was a little over a months ago. I feel ashamed to even call them. I had a clean EMG about 6 months ago. Strength is normal. No muscle atrophy. But my body, or more like the right side of my body feels fatigued, somehow weaker, rubbery , jelly, stiff, twitches, pops...just not a normal feeling.

I also developed this strange numbness like sensation also on the right side. I wouldn't say it numbs but it feels like my limbs are not there. I remember sleeping with my sock on a couple months ago just to feel normal. My fingers feel foggy/ hazy, jelly when i rub them against each other or my hair. My right pinky finger feels clumsy. My right arm feels fatigued and clumsy. Same goes for my leg. I do from time to have this twitch on the top of my hand. My ankle feels jelly and clumsy. If feel like i have to think when walking. Tell my brains to make sure my right leg / foot is following. Otherwise it feels like i'm about to trip. But i don't. Even though my leg / foot feels like it's dragging. My knee feels like it about to collaps.

The reason why i'm reaching out is because i stumbled (yes i know i should stay away from google and i'm really trying) upon a article about a man in his 60s who had been suffering from muscle twitching and cramps for 4 years before being diagnosed with ALS. Eventually he also started losing his breath and later on he couldn't even sleep on his side anymore. Other than twitching i haven't developed any of his other symptoms tho. But i'm worried that this could be a very early sign. I used to assure myself that time is on my side. But i keep reading about people suffering from symptoms for months and even years before being diagnosed. Even people my age.

Right now i'm in the darkest period of my adult life. Even with the therapy. My brain is just laughing at me. Can anyone help me out a little? Thank you for your attention and much love to everyone!


Cheers
 

ShiftKicker

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Please read here: https://www.alsforums.com/forum/do-i-have-als-als/26591-read-before-posting-answers-common-concerns-about-possible-symptoms.html

This covers such things as light headedness, dizziness, sensory issues etc. You do not post anything that indicates a symptom pattern for ALS. You must work with your doctors to get to the bottom of your symptoms. If you have lived in the tropics, there are a variety of diseases that may cause some of the issues you state- not ALS though. If you are in a dark place, you must work with therapists and your medical care providers to make sure you receive the support you need, but you can knock ALS off the list of things to be concerned about.
 

lgelb

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Hyperventilation and the anxiety that goes before/after it can cause pretty much everything you described.

As your own insight confirms, you do not have ALS. As you are doing (still?) therapy to address your past, perhaps a change in approaches or your own routines may help you get over this latest hurdle. Survivor, grief, loss, guilt, anger, fear, frustration is a powerful brew in terms of the havoc on the body the combination can cause. Likewise, sleep, hydration, nutrition, bodywork and social interaction are underrated in terms of the improvement they can provide. Life is never going to be perfect, but you control your responses.

At 30, you deserve looking ahead to a long, healthy life, but only you can make that happen.

Best,
Laurie
 

Neveralone

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Vlaams brabant
Hey everyone,

Thank you both for the quick responds.

It's just a lot of strange and scary symptoms that eventually led me here. I'm still and will continue working with my therapist to deal with my past and future. And staying of Dr Google!

Merry Christmas and Happy New year

♥
 
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