Twitching, Dizziness, and ALS

Hi Everyone,About a year and a half ago I started twitching 24/7. I went through the ALS scare and got through it. Even though the twitching in my calves hasn't stopped in almost 2 years, life returned to near normal. Then, a couple months ago, I started getting really dizzy. After about a week, I looked my symptoms up online (stupid, I know). Every time I typed "muscle twitching" and "dizziness" in dr. google, multiple sclerosis came back. Once again, I spiraled into a state of perpetual fear. I went to get an MRI, and as I lay on the table, my entire body twitched. Surely, I had something terribly wrong, right? I didn't need the MRI to know the outcome. Yet, much to my surprise and relief, the MRI was negative. So, my neuro said I needed to see an ENT. The ENT checked me out and said I have migraine associated vertigo. This seemed like a stretch. But, it is a real condition. People get dizzy from migraines without even getting a headache, and sometimes the dizziness lasts for months and even years. The reason I wanted to post this is because, even though BFS is not a fatal disease, the psychological nature can be crippling (as we all know). Chances are, everyone on this board will experience other medical conditions in their lives. Every time a new symptom shows up (not associated with BFS), it will be an accompanying symptom to the twitching (in our minds). I couldn't go to my doctor with the symptom of dizziness alone. I had to have muscle twitching AND dizziness. If I've been diagnosed with BFS, then isn't that a separate condition? If I'm being honest, the only reason I brought the twitching up to the doctor is because in my heart, I didn't believe I had BFS anymore. True, I had been diagnosed with BFS, but it was really just the start of MS. The point is, if I truly believed the diagnosis from my neuro 1.5 years ago, then I shouldn't have thought that BFS turned into MS because I suddenly became dizzy, if that makes sense. Does anyone else do this? Is it hard for others to separate BFS when new symptoms (ex. dizziness) present themselves? The truth is, I'm exhausted again. The first bout 1.5 years ago put me in the darkest world, only to come back to that place again. I'm so tired of living in fear. But, I'm slowly crawling back out. I hate to say it, but the fear has changed my personality. I can't sympathize with people like I could before. I hear people complaining about having colds or the flu and I don't care. All I can think about is how horrible it is for those suffering with ALS and MS. My twitching is nothing either. But the fear is real. I really wish the governments of the world would focus all their efforts on curing ALS and MS. IMO there is no greater tragedy in the world
 
I have had dizziness but it is fleeting and quite infrequent, to the point where it never worried or bothered me. Sorry to hear of your fear, I do understand and can certainly relate. I completely agree with your last sentence. I passively follow ALS research, and I really believe an effective treatment is close at hand. MS can be tragic, but nothing like the devastation and heartbreak that comes from ALS. My wives supervisor has MS and you would never know, if she hadn't mentioned it to my wife.
 
Thanks Runningbear. I'm really glad I came back out here because I read someone else has dizziness and BFS. I'm taking Topamax (aka dopamax) and the side effects aren't good. I honestly don't think I have migraine's. No headaches, I'm just dizzy. I do know my muscles twitch 24/7. That much I can prove!Wow I didn't realize they were getting closer to an ALS cure. Yes, MS is definitely not nearly as severe. I guess some of the more aggressive forms lead to paralysis and blindness, but most do live active, near-normal lives. I think they're getting closer to cures for MS too, right? At least I know they have ways to slow it down.
 
I know how you feel, I just started getting Dizzy the last few weeks and I'm going to my Doc today to see what he thinks. I just had a full body Emg which was clean so I let the big fears go with that. But I do not like the dizzy crap and it is starting to run the anxiety through the roof again. BFS Sucks and I wish they would find a cure for it too.
 
While I am over the whole ALS thing, your right that a part of it stays in your subconscious. Every little pain, odd feeling, illness, now brings out thoughts of are they related to my twitching. I am not sure if this is something you get over. I am at the 10 month mark. I don't stress about ALS anymore, but will admit "new" symptoms make me pause for a minute still.
 
According to my chiropractor, younger people (I'm 38) should be able to stand on one leg, with their arms crossed and eyes closed for about 30 seconds. It doesn't matter which leg. Ever tried that? I find it extremely difficult. I keep compensating back and forth.However - my girlfriend, who doesn't struggle with balance- and dizziness-isues, is even worse at this test, than I am. Point is – there may be numerious tests out there, but be careful not to jump to conclusions.//P
 

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