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deniseannette

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Joined
May 8, 2011
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27
Reason
Learn about ALS
Country
CA
State
ontario
City
toronto
Thank you so much for taking the time to read my post. I am new to this forum. For about a month or two I noticed that my toes (on both feet) would have a tingling, twitchy kind of sensation. Kind of like a very light electrical charge. I chose to ignore it. I will admit that I can be kinda cheap. i had holes in my shoe, so I assumed that that was why my feet had that feeling. Maybe it was too cold or i don't know. Then I came down with a very nasty virus. I could barely keep food down, could'd get a grip of things and a metre felt like a mile. Doctors told me they couldn't do anything. That I had to wait it out. I still feel ill to this day. Its been about 6 weeks.

As of right now, I've been expriencing:

Muscle twitching: calfs, thighs, arms, fingers, shoulders,shoulderblades and buttocks
Muscle weakness: Left arms (but i barely use my left arm, I'm right handed. I keep telling myself that at least). its not significant.
Pain: spinal cord, back, shoulder blades, joints.
Gag reflux are out of control. I can barely brush my teeth.
When I sleep, i feel like my throat is closing in on me. i feel breathless at times.
I never wake up fully rested.
I wake up shaking, shiver (like internal tremors) more often than not
Stiffness in both hands (mainly left hand)
Facial twitching (nose, upper lip, eyes)
Tingling sensation around face: mainly left side.
It feels like the left side of my face is a little slimmer than the right side. My cheeks are smaller in size on left side.
My left arms is about 1.5-2 inches smaller than my right arm (yes, i measured)
Light electrical charge sensation (left foot, leg and thigh)
Cracking and poping of every joint.
Vertigo (not too extreme)

Ive woken up a few times gagging. I thought I had the stomach flu (hoping it was the stomach flu) but my blood tests came out fine. It feels like I've had 100 blood tests and all of them have come back normal. My family doctor told me to take vitamin D for muscle twitching. that did not help.All I can think of is ALS

I'm so sorry to badger you all. I'm just at my wits end and so scared. I feel like Ive been in hell for the past 2 months. Everyday I wake up hoping I can be my happy-go lucky self but i can't. Ive lost all my energy. I've been pretty much a hermit. Its very hard to see muscle atrophy because I am overweight. Before i became ill I was about 237 and now im about 218, probably less ( I guess that's the only good thing about this ordeal!)

I dont have much family or friends. All I have is my dad, who is 69 years old and my sister who is developmentally handicapped. I wouldn't want to put added pressure on my father. He is still out in the workforce and has a lot of things to deal with. I'm 21 years old and to be honest i haven't done much with my life. I'm so terrified that this will take my life.

What do you all think? Is this something I should worry about? Maybe it is anxiety?

I'm having a CT scan done of my spine and brain on May 18th. I have a appointment with a neurologist on June 25.

Please pray for me.
 
The good news is it sounds absolutely and definitely, nothing at all like ALS. It does not present that way, and not that quickly.
It does sound like a post viral problem tho. There are conditions like Guillian Barre, which cause a host of post viral neurological issues. They can either be very acute and serious, or not so serious but just as worrying.
Its good that you have seen a doctor and are being reviewed by a neurologist.
You can take ALS off the table.
Aly
 
my thoughts are post viral syndrome exactly like aly said denise.
it may take a little while longer but you should see some improvement.
the percieved atrophy is most probabley from the weight loss.
extra suppliments to help your immune system and plenty of rest should help.
 
gone to moderators,oh dear! my post will turn up eventually till then.............i agree with aly.
 
Thank you so much for your quick reply. Ive been an emotional wreck for the past 2 months. I've pretty much cried for the past 3 weeks straight. Which I know, cant be good either. Im so fatigued. I can barely shower myself. Im so lonely too. I'm constantly twitching and jerking. I'm losing weight. I've looked into post viral infection. Hopefully they have some sort of treatment for it. ALS can't progress that fast? Ive heard of people dying within 3 months. But i guess the symptoms were there before diagnosis?

Thanks again so much for your kind word.
 
Most post viral illnesses just have to be Waited out! No real treatment unless its really severe and lands people in hospital. You are not that bad, or else you would already be in hospital. I am not saying that you are not unwell, but GB can stop breathing very fast early on or cause creeping paralysis first.
There are much milder forms of post viral infections, but they are tricky to diagnose.
ALS dioes not progress either that fast or with that pattern of symptoms. The people that pass away quickly are often undiagnosed for a long time, or have simply ignored the symptoms. believ me some people are bedridden and still dont get advice on what they may have. Its the other extreme to the Overanxious spectrum :)
You are tired and unwell, curl up somewhere safe and warm and do not push yourself.
Says Nursey Aly
 
It still scares me to be honest. Im so fed up with the way I'm feeling and it seems like doctors can't do a thing. All your words have been so kind and hopeful but my mind keeps messing with me.

I'm still getting muscle spasms and cramps. Facial tingling and twitching. I also can't sleep. The spasms are the scariest because they just don't seem to go away.. I've been told that the twitching is the early stages of ALS. The twitching are mainly in my legs but go off to other places sometimes. I even get them on my stomach. Sometimes I get a burning sensation and cramp- like sensation. My left leg is what is painful at the moment. I can't sit properly in a car and can't get comfortable in bed. It feels very cramped. Even at rest. My body twitching occurs about 2-5 times a hour. I keep on getting this tingling sensation around my head. I'm scared that its my brain messing up my nerves. Like my nerves are misfiring and are confused.

I was tested for vitamin d and b12 levels and they were both fine. What I realized throughout this ordeal is that I'm definitely not as strong as I thought I was. I've been very depressed lately and I feel like I can't go on. I'm just a shell of a person. I wake up to twitching, nausea, internal tremors and fatigue. I cry and ask my dad to give me a hug and just lay in bed for the rest of the day. I don't even have energy to brush my teeth sometimes. I've never been so scared in my life. I just want this to go away. I feel so guilty for putting my dad through this.
 
I forgot to add that what I had was a gastric virus. im so sorry to bother you all. I'm just so scared and alone. The muscle cramps, twitching and jerking is so scary. I'm also so afraid to sleep cause I always wake up worse than the night before. I write this right now with muscle twitching in my right calf and mild vertigo. I keep on getting buzzing sounds in my feet. Last Wednesday i thought a earthquake was taken place! I will def take your advice Olly and take some supplements. I have been taking vitamin D but to no avail. I know you're not a doctor (I think lol) but is there any supplements you could recommend to me?
 
Well, who told you that twitching is early sign of ALS? That is nonsense for MOST PALS. It does happen, rarely (that is why some studies hasve been written abou that). You may have benign fasciculations syndrome - fatique, fasciculations, sensory stuff, percieved weakness....but its harmless. Visit aboutbfs.com.
If you read medical posts or articles (not some net summary of symptoms) you will find out that fasciculations appear later, not in the beginning.
I have had them 4 years and do not have ALS.
 
deniseannette, while you wait to find out what it really is, you need to stop feeling guilty for not feeling well... easier said than done I know, but whatever's going on, you didn't cause it.

Since you're really fatigued and depressed on top of it (and who wouldn't be, dealing with all this stuff at your age) I'd say to try to get outside and try to get a little fresh air and sunshine every day, and to remember to eat at regular times even if you don't feel like it. Magnesium or potassium deficiencies can also cause cramping (can't remember which, but you can look online to find out). There are many other diseases out there that are treatable which can cause neurological problems, for instance, Lyme Disease was the one I kept looking at. Bell's Palsy is a neuro disorder as well, a friend of mine had it when she was 21, and she was totally fine afterwards. Please don't jump to conclusions as to the worst scenario, most likely your symptoms are made worse by your anxiety over them. In other words, you're thinking too much about them, TRY to read/keep your mind occupied about something else.

Good luck, try to stay positive, and see if you can get some help for your anxiety and depression – it will probably help you cope with the other stuff.
 
Get something for the anxiety, I´m sure that half of your symptoms will go away,at least it did for me, and you will sleep better. Lack of sleep will increase your symptoms. I have the twiches everywhere,weakness, cramps, tremors,atrophy,you name it. Get your sleeping in order and you will see that you will feel better while you wait for your neuro appoinment.
Good luck
 
I'm trying so hard to stay strong but im so weak. Physically and emotionally. I couldn't sleep last night again. I felt like i couldnt breathe. I had a tough time swallowing and getting air into my chest. I think my diaphragm muscles are failing. Laying down is the worse. The twitching is still here. I was thinking back to when it started. It started about 2 weeks before I got the stomach flu. So its actually been about 2 months. I feel like a liquidy type feeling in my head. im trying so hard to be positive but its hard. I can't believe this is happening. Im gonna try to get some fresh air today for sure.

For the post viral syndrome. Is there anything that you might be able to reccomend to me? I know you're not doctors. I was just wondering.
 
You need to get someone to take you to the doctor again. If it's anxiety causing the breathlessness, because of your other symptoms and lack of sleep, then a dr may well be able to help.
 
"I have the twiches everywhere,weakness, cramps, tremors,atrophy,you name it"

That's pretty much what I have but no major atrophy and you're in process of being diagnosed. I have horrible internal tremors. My neuro appointment is June 25. Talk about a torturous wait!

I'm going to the herbal store tomorrow. Maybe I can get something to boost my immune system...im a hysterical mess and probably so annoying. I apologize.
 
I just replied and my long post disappeared. To summarize, none of your symptoms sound like ALS. Get a grip for goodness sake. Stop searching on this website and power down your computer. Get some fresh air.

You are not listening, so why bother asking more questions
 
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