Here are my symptoms I’ve been struggling for 9 years but over the years everything has just gotten worse…feelings in my head like I’m having a seizure, the feeling feels like I’m drifting off to sleep in my head like I’m losing consciousness and getting really spaced out bad through out the day and then I start losing my balance and I can’t stay on my feet, feels like I’m going to faint or I’m going to go paralyzed feels like a extremely quick adrenaline sensation that comes on,also like the ground is moving underneath my feet, when I walk it feels like my legs are floating and feels like I’m tripping over my feet, and when I use my arms they feel like they are floating and they do the same thing as my legs feels like they are in water just floating with a weightless sensation with it, it feels like my brain isn’t controlling the movements right in my legs and arms, like the signals are not getting there from the brain, and my voice is scratchy and weak and my voice is deeper and my voice is really low tone from it being weak, I’m constantly having to clear my throat I always have phlegm build up and when I use my arms or legs they feels so crazy after I use them, they stiffen up on me and makes them feels weird like they are limp feeling and they extremely don’t feel like they are my legs and arms at all, and my muscles in my face are weak and the muscles in my face stiffen up when I chew food or holding a smile for a few seconds,my hands are stiff and so are my fingers, my hands stiffen up or cramp up when I try to grasp something and hold for a second I have twitches in my palms all the time when I try to grasp something and hold for a second, my stomach muscles are weak and they are stiff and when used they also stiffen up to where I can’t use the muscles in my stomach, and when I use any muscle after I have used it starts twitching like crazy, so like if I sneeze or cough of course your muscles will contract in your stomach and then they will start twitching I have constant trouble breathing like inside my chest is weak and around my ribs I have muscle twitches all over 24/7! I have trouble getting my words out of my mouth, like i feel blank in my mind and I don’t know what to say I studder my words really bad, and it feels like my brain isn’t connecting to my mouth or my tongue to make me talk, and also my tongue feels fatigued and weak and it also stiffens up to and I get small twitches on my tongue and my entire mouth taste just like metal all the time and I have dry mouth and cotton mouth all the time and my tongue sticks to the roof of my mouth, I get hot all over I start turning red.
and my throat is weak and have trouble swallowing and sometimes when I began to swallow I will have this weird spasm in my throat and it stops me from swallowing for a couple seconds! And I get these low blood sugar attacks to off and on throughout the day where I get really weak and shaky all over, but my sugar levels are always normal and I get buzzing sensations in feet and other places in the body, especially after moving around, and my head feels like it’s numb all over 24/7 and it has a tight sensation with it all the time, I also deal with dry eyes and itchy, my head feels like it’s spaced out and severely out of it totally disconnected from my surroundings and my body and my head and my mind. It feels like I’m on a bad acid tip or something feels like I’ve done some drugs and it has physically messed me up in my head physically! I also have crawling sensations in different parts of my body, and I get this rain drop sensation on my skin sometimes in different places, and I also sweat really bad for no reason sometimes, and I also get these hot flashes sometimes, I also get dry skin really bad in my hands they peel really bad I think it’s more of a fungus, I also get these sensations where it feels like my hair is tickling my skin on my legs, and I get these static sensations different parts of the body. Also my stomach always seems nauseous like it never wants anything in it. I also get tingling sensation on my scalp sometimes. And my gums seem to get red a lot and they are sensitive, and I get numbness and tingling by leaning my arms on somethings and leaving it there for a second, every time I wake up my fingers are numb or one of my arms will be numb, it’s like I have poor circulation all the time.
Like right now as I’m typing this my fingers are weak and are stiffening up I have a hard time using my fingers it’s like they don’t wanna work right and my right pinky is going numb. And I have skin sensitivity all over. my back sometimes you can rub my skin and it will hurt. And when I’m sitting still or laying down I feel like I’m moving back and forth it’s like a shifting sensation like I’m moving up and down in my body, and when I stand up it feels like the ground is moving up and down and it’s tilting side to side, my head feels like it’s swaying frontwards and backwards and it’s swaying side to side. So everything in my body from head all the way to my toes is very very fatigued and weak can’t use anything for very long and it’s like like this from when I go to bed until I go back to bed. Feels like nothing’s is mine on my body feels like nothing belongs to me everything feels foreign to me, even my tongue feels like it’s not mine feels funny when I use it, like I don’t have control over it, that’s the way everything feels on me, feel like my brain isn’t connecting with anything I feel like I have know control over anything I can feel muscle atrophy all over im getting thinner all over, my shoes feel to big now for my feet, my feet are really loose in my shoes my hands are shrinking my muscles in my face are getting smaller, everything is soft everywhere, I feel Bony all over. My muscles tremble every time I do something, every time I stretch some of my muscle will cramp up and I I’m just weak all over from head to toe, everything is weak on me, my legs and arms feel like there not attached to me they feel disconnected and my hands feel that way to, I’m having trouble controlling my hands my arms and legs and my tongue and my face muscles including moving my mouth while I’m trying to eat
Hi Cameron, I think you need to see a neurologist ASAP and describe these symptoms to him/her. They are more intense than I had with MAV. You may be exacerbating things by being panicked about it though. I had many very troubling symptoms too that were not headaches - more nerve related. I thought I had MS but the MRIS didn’t show anything. Have you ha an MRI to rule out stroke? If you don’t have an MRI show anything you probably have an intense early case of MAV and need some drugs to calm down everything. Gabapentin is my one. Good luck and feel better!!
I can certainly relate to your general condition and some of the specific symptoms you describe.
As liv said: what kind of medical exams had you done in the past 9 years and what were the results ?
I’ve had a MRI and a cat scan on my brain both came back normal
If those scans haven’t been to long ago, then you can exclude for 98% a very serious condition such as a brain tumor, Parkinson and the like that can cause the same effects.
MAV can’t be seen on the screen, neither can it be seen in the lab parameters of a blood sample. (Well, at least as far as a I know)
Have you tried a specific diet yet ?
I’m afraid that I have als
Sorry, your reply was cut off …
I’m afraid that I have als
If you had als, you’d have been long dead in the last 9 years of having those sx. Stop worrying yourself sick with something you don’t have. 
The thing is that most of those symptoms wasn’t as bad all over its just that over the years things started to get worse all over, like my whole body constanlty was weak it was hard to things for very long and it gradually got worse and worse as the years went on and the all of this crazy stuff started happening like my legs being disconnected from me and my arms and my hands and my tongue and mouth and having trouble controlling all of that
Give drugs a shot - gabapentin has been the only one I can tolerate at a pretty low dose and has cut many of the symptoms down. Not perfect but I try mixing in supplements to keep things under control. And following an anti migraine diet does help to some degree. Avoid tyramine rich foods like nuts, cheese, etc- that all increases head pressure and stuff. but I agree with Fussy Fussy to try to not imagine the worst and give medicine a try to see if you feel better.
Hi dear,
ALS doesn’t progress like that. You would have failure of specific organs, limbs etc. by now. Get it out of your head
Some of what you have is anxiety. I am not saying all, and I understand why you would be anxious, it does have a physiological reason. But trust me, some of it is an extension of the physical difficulties projecting on you psychologically.
“Although the life expectancy of a person with ALS averages about two to five years from the time of diagnosis, this disease is variable, and many people can live with the disease for five years and more. More than half of all people with ALS live more than three years after diagnosis.” By LIVE, they mean with life support, etc… not functional like you.
I get what you’re saying because I also have many of the symptoms you describe. But the first thing you need to do is stop getting on those ALS forums. your mind is a powerful thing. I’m not doubting you may have something physically going on, but worrying will not accomplish anything. You most likely have some adrenal fatigue. That can cause many of the symptoms you just mentioned. Take it easy.