One Month Post Neuro Visit: Update

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monstergirl2768

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Hi folks -

It's been a month since my neuro visit (see previous posts) and things have gotten a bit worse - more constant twitching in lower legs and feet, percived weakness, and now an occasional twitch and buzzing in my tounge and mouth. I called the doc a few days ago to ask him if the tounge thing was something he wanted to check into - but his answer was, "I need some time to go by before I evaluate you again". I spent the weekend feeling sorry for myself because one of two things are going to happen: A, I waste a perfectly good summer worrying about having ***, or B, I do have *** and this is my last summer to enjoy two working legs (and other valuable body parts).

I don't know why I am unable to let go of this fear. It's almost like the fear itself has become the disease. Imagine 15 years ago when access to health info was limited - I would probably be ignoring these symptoms. My activities are not limited and my running times have actually improved in the past 4 months since this started - because I'm running harder, trying to convince myself that I'm not having weakness!! So maybe my calves feel weak because I'm running more?

I have an appointment with a naturopath/homeopath doctor that I've seen on and off for years. Mainly saw him when mom and dad were still picking up the tab - insurance doesn't pay, of course. Right now I'd pay anything to the person who is able to figure out what's going on with me, so if I do have something to be afraid of, it's real, and not imaginary.

I wonder, was anyone else afraid of *** or ** long before their symptoms started? I was - I'm fairly interested in medical news and I read a lot of magazines, so I had some basic info about these diseases and had a mortal dread of ***. It topped my list of "the disease I would most like to avoid". So to have symptoms that even suggest it, even though I KNOW the weakness comes first, is just overwhelming to me.

Well, best wishes to all my fellow twitchies out there, and if I hear anything interesting from the alterna-doc, I'll post it here.

-Keri
 
" one of two things are going to happen: A, I waste a perfectly good summer worrying about having ***, or B, I do have *** and this is my last summer to enjoy two working legs (and other valuable body parts). "

either way you note is a good summer to enjoy, that is what you should be doing. i am 1 month after my neuro visit too and twitching worse than when i went in too. i asked for another EMG and got basically the same answer. come back in 6 months, if nothing changes in the clinical exam he would not even repeat EMG.

so on some level it is a waiting game, but based on your physical abilites you need to get out and enjoy.
 
I charge $199 to tell you what is wrong. So send me a check. I will forward my address or payment. You have BCFS. There is currently no cure just managment of the illness. Tongue thing is very common! I have it all the time! So do many others on this board. Get that ALS crappp out of your head because you don't have it. You would not be making improvments in performance if you had ALS or MS. I never feared ALS but I did fear MS but the more I learn the less I worry. Anyways I still feel crapppy. Keep moving along...it will pass. Oh, it's real its just not what you think. Sorry but sometimes we need to hear it to snap out of the spiral we are in. Things (sx) will come and go but they will pass trust me. Well, summer is not over yet.
 
Wow, two replies in ten minutes!! That's worth at least $199. You know, it just occurred to me that in all the magazines and health articles I've read, I never, EVER heard of BFS. So maybe that is why I'm having a hard time accepting the diagnosis. I'm an analytical person and I like to think there are answers to every question. I think most of the people on this board are the same - after all, if we weren't obsessed with answers, we'd be sitting by the pool with a drink in our hand, ignoring the twitches, am I correct?

--Keri
 
"an analytical person and I like to think there are answers to every question. "

Welcome to the club, I am paid to be an analyst all day and no doubt it is part of my personality at this point.

I think that if I could find a silver lining to this stupid condtion, it is teaching me that sometimes there are no answers and that is OK.
 
LOL Zeke! You betcha. I'll bring the tequila shots. Are you a Texan? I spent 4 years in Houston with my husband. Still go back there for visits with his family. Matter of fact, we were in Houston in March for the onset of my symptoms! I'll never forget it - driving to Galveston with a tingle in my right calf that eventually cramped up later that day. Random pops, crawlies and twitches started a day later, both legs. But, since I didn't start researching the symptoms during my trip, we had a great time, and it wasn't until I got home and back on Google that all H*ll broke loose.

--Keri
 

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