Finding Support and Solidarity

Highlights Only
C

chikachack

New member
Hello,
Going through the same as most of you, just wanted to say hi. Hopefully someday I will be able to help you out. Thanks for this site. JB
 
Rockwell – I’ve been twitching for 6 months and have never had an EMG. In other words, I’m less “in the clear” than you are. Early on, I was examined by a neurologist, before I knew anything about the dreaded disease. It was only after my exam that I said “okay, what else could it be?” and Googled “twitching.” I then went through the very same scare as nearly everyone else here. Fortunately I was able to get over it in a short time after doing some research, looking at the facts (as best I could from a non-medical perspective) and especially after finding this site. The only reason that I am still posting here today is because I was so impressed with the people who started this site, its purpose, and the amazing support that people were offering. I decided to stay and contribute for a while.

I’m very sorry to hear what you are going through, your new symptoms, and especially your mental anguish. I wish there was some way that I could help you. But I must be honest—I am at a loss as to what to say to you. What could anyone possibly say that would help you to feel better? I am trying hard to discern the purpose of your post. You have apologized for “bringing the negativity to this forum” and said that you do not want to “cause a stir” but you have decided to post anyway, even though you have been reading these posts for months “for solace.” If you have not found any, then what exactly can we do for you? If there is anything, just let us know. If you don’t have a clear answer to that question, then I have a suggestion—find a way to heal yourself, then come back when you are ready to help others heal as well.
 
If you read my recent post on 'Unsetting news' in the 'About bfs' section you will see that you are not alone in struggling to determine the truth of the matter in all of this. I can't offer much more than to say you are not alone (I will point out in your favour that at least you did not have a doctor testify that it did look like you have some atrophy in your hand) although it was a rheumie not neuro who said that. But incidentally the neuro who said I did not have *** a week before what this other doctor said about atrophy/weakness, did like you said a 5 minute exam on me that I found almost insulting. It was almost like a kid playing doctor on a doll.

I don't know I'm really scared too. I keep thinking how *** is such a terrible serious diagnosis that of course the neuros wouldn't want to alarm people if they have mild to moderate suspicions and would rather wait for conclusive tests to come back. I was also in a terrible state at my last apt which seem to confirm my suspicions even more. Like here I am a 34 year old woman, already hysterical, without any conclusive tests is she really going to want to alarm me? I don't think so....

Anyways, I know what you mean about coming on here and sounding selfish but in our cases I think it's understandable. Myself I was feeling pretty good after my neuro apt only to realize that another doctor had different opinions and I myself can SEE and FELT and the time what he said about my hand and legs (mild things in both cases) but that's how it starts right? Some people not neccessarily on this board but others have accused me of morbidity but I don't understand this- it is truly just a deep unfathomable fear of having your life cut short by like the worst disease a person can get other than like ebola or flesh-eating disease. Even those ones at least are quick.

Anyways, I look at my hand and I know there is no way it was like that before and from my research, there is not a heck of alot of conditions other than the bad one that cause that 'for no reason, no injury etc'

Everyone deals with extreme fear in their own way but I have already decided 3 things: 1) that I will retain 'some' hope to keep me from completely losing it 2) that even if the worst comes to the worst, I will not give up as I have never really believed in western allopathic medicine anyways. I don't want people who might read this to freak out as you shouldn't as you probably have not been identified as having actual atrophy/weakness but I have been reading Eric Edney's site and it really looks like there are some promising treatments within it most of which originate from Europe (Germany etc) where I truly feel they are more advanced in their medical knowledge and less victimized by giant monopolizing pharmaceutical companies who don't want to see non-pharmaceutical cures actually working. Anyways, I apologize again in advance if this post sounds morbid but at this point I feel I must consider the possibility and more importantly know that if it actually comes down to it- I'm not going to give up just as Eric Edney did not give up.

I guess that's it. I truly feel your fear and will pray for the both of us. Incidentally, what part of the country are you in?
Val2
 
Ha Rockwell, I read your post before you self-zotted ;) Anyway, comendable. (Not to suggest anything untoward therein, btw).

I can't tell you anything you don't already know about things. You have had the benefit of favorable medical opinions, which is more than some of us. None of us can ignore the power of fear, of brains that get a little out-of-whack, that can turn molehills into mountains. Perhaps this will stand your patients in good stead one day, when they come to you in their twitching fearful masses.

But here is something entirely non-medical to consider if you wish. Playing the "might-I-have-this-or-might-I-have-that" game is a losing proposition. Most of us have reached the point of objective assessment of symptoms against known diseases and have reason to doubt the counsel of our fears. But the fear remains, has a life of its own, and feeds on very real physical symptoms that, however, fall far short of the "I can see it coming through the door" variety.

Of course, it might be just the beginning. Maybe it will get worse. I bet every one of us has thought that. That's really the only way the fear can play its empty hand. It has nothing. It has to bluff. We fall for it every time.

Instead of sitting down at the table to be dealt in, an alternative is just to shrug your shoulders, recognize there are some screwy things going on with your body and mind at the moment and do the things you can do today. You can never know for sure, no matter how many times you examine yourself, read braintalk, whatever. But you can refocus from the fear to "Well, whatever is going on, today I can do many things that I enjoy." One day at a time.

When I can succeed in shifting the issue from "Do I have it or not?" to "Regardless, I can go for a walk with my wife today, go to church, sing no worse than I usually do." That's the game I CHOOSE to play. Maybe I will be the one to really get a horrible disease, but spending every day until my diagnosis in misery would be particularly tragic.

I'm not saying this is easy. But neither is it impossible. Sometimes I've just given up and said, "Fine. I've got it. Now I'm going to do something fun while I still can, today." When I feel at my worst, that seems to be the only thing that really works for me. Sort of mental judo :)
 
Just posting again because either I posted in the wrong place or the poster has edited his post somehow....I was under the impression that the poster was REALLY, severely freaked as I am (sorry if I goofed somehow!) I looked and looked but couldn't find the post that I meant to respond to :rolleyes:
 
Today is not good for me, my right leg seems weaker, and my tongue is going crazy, along with the rest of my body. Mentally, I have good and bad moments, like most with some disease. Trying desperately to keep my chin up. I am 33 yo, and scared. Going to an ALS specialist in 2 months. occasins, Bladerunner is my FMOAT. Like tears in the rain.....
 
Well, the Blade Runner quote is there for a reason :)

I respectfully invite you to consider whether a simultaneous leg (distal or proximal, btw, objective clinical weakness or subjective feeling of weakness, too-brisk reflexes?) and tongue presentation would be a little unusual. (I'm sure everything happens in theory, like meteor hit the earth, but some things are more typical than others.)

I have had my rubbery right leg since late October, and my weird tongue for over 6 weeks now. I've been twitching for at least 8 months everywhere. Yet no matter what I feel, I can't say that I am suffering ANY symptom that anyone would notice. I can do the heel-toe walk, as well as walk on my toes and heels, speak plainly, no matter how weird I feel, swallow, etc. So once again, here we are in the "This is just the beginning, I know it..." game, like Lucy holding out the football for Charlie Brown. We all know this can end only one way: Lucy yanks it away and everyone laughs at Charlie Brown. It is the same with our symptoms and fears.

I originally researched because my upper arms felt "fatigued," or weak. I think the twitching increased later (or at least my awareness) after learning the bad implications (so I thought) of twitching. Heck, I haven't even thought of my arms for months, because they're fine now. Then it was my leg. What a coincidence! Even though my original symptom had nothing to do with the scary stuff I found, by golly I really had it going on in my leg all the time! Now it is my tongue, too! If I read somewhere that A/L/S manifested by diarrhea, then I bet I'd have that within 24 hours, too.

I am really trying not to play the "Do I have it?" game, because that is one you can never really win. You may win a few hands, but the Devil is always ready to deal you a new symptom and whisper "This is just the beginning..."

If I have "it" that would suck a lot. I probably don't. Make that almost certainly don't, for a number of reasons. Day to day I can do what I need and want to do. If something changes tomorrow, then it changes. Until then, like Deckard, I don't know how long any one of us have. Freakin' terrorists could kidnap me tonight and cut my head off for an Al Jazeera special. Probably about as likely as me dying of A/L/S.
 
Rockwell- You said you tested positive for Lyme? Well there's you're explanation right there... Lyme is known as the great 'mimicker' of diseases including the feared one. Lyme can be serious and difficult to treat in some people but it is not lethal. I was actually very DISAPPOINTED when my Igenex test came back negative so I consider you lucky that you know what you have and that it's treatable!
 
Today I had another EMG by my neuro (last one 7 months ago). Probably 15 pokes, all on the right side. He concentrated on my right foot where I have felt stiff and "weak." He even had me tilt my chin up, and stuck the needle through the underside into the base of my tongue. I was not expecting that. He didn't see a single twitch. "Everything is fine, no ALS." My fear is that my foot is just beginning to get weak and his emg there was too early. Crazy, huh? I still have the university ALS clinic appt. in March. I'll see how I am doing, I had to wait four months to get the appt. My fatigue actually isn't that bad today, now that I am so worried about my foot. Go figure. He wants to try Trileptal for the twitches/BFCS. I am still twitching like crazy, and feel like crap, I can't believe this is benign. Thanks for listening.
 
I am glad to hear from you Mr. Rockwell. That's excellent news. It is always good for all of us to see people who are just as convinced as we are that they are doomed doomed doomed but then the tests always come back the same way.

Sounds crazy? Yes, as a matter of fact it does. But you have good "insight" as they say, because if you were really crazy you wouldn't know it :)

How old are you? Around 30? Here's a deal: let me trade my 48 year old body for yours for 48 hours, twitches etc. and all. When you get it back there will be a smile on it you won't be able to get rid of for three weeks.
 

Users who are viewing this thread

Total: 1 (members: 0, guests: 1)
Back
Top