One Year of Twitching/Pains: Scared!

[IvanTheTerrible]

Hi to all of you again! I was scheduled for my emg june 2cnd and the doctors nurse called and said they would have to reschedule for june 8th because the doctor had to go out of town on a family emergancy. I only had 1 day to go and now I have 1 week to go. I am on edge about all of this. June 8th will put this twitching and pains at the 1 year mark. I am scared *beep*! My twitching is mostly 1 twitch instead of pulsating now although I still get the pulsating ones ocationally, my palms of my hands get these really fast twitches that go so fast that it could almost be a vibration. I get pains I think where I am twitching and dont know it. I am getting alot of pins and needles and strange sort of scraping sensations on the bottom of my feet. Icant stand not to know much longer. I was extremly fatigued for 2 days but most of the fatiguehas passed for now. On top of that I have this lump about the size of a golf ball between my neck and collar bone that has been there for a month and I am assuming it is a pulled muscle but I worry about other things because I have become sort of a hypo I think. Also t seems like my breathing is off like my lungs are constricted and am constantly having to clear my throat. Can someone offer any advice or encouragment to get me through this week? I know that many of you already have but I am having a rough time with this. The pains scare me like that makes it more likley als and the breathing and stuff is wierd. Anyone? I would like reasurance but I would also like honesty if you think it is seriously something bad. Thanks Barb

 

[tearsneverfall]

I would have that lump checked out. That is what brought my whole health anxiety mess on to begin with. I worried about a swollen lymph node in my neck for weeks that turned out to be nothing. If I had gone to the doc right away I would have possibly saved myself panic attacks in the end which I think brought on my twitching.

I understand you are beside yourself waiting for your EMG and I have no room to talk in that department because I am dreading my neuro follow up tomorrow like CRAZY!!! I'm also still freaked out about ALS so I'm not preaching, I promise you that,

BUT I will say this and mean it: Now if any new things comes up with me whether it's related to twitching or not I am going to the doc right away because if it's something that is going to kill me then it's going to kill me eventually anyway so I am taking any new health issues to the doc right away in the future.

It might help ease your mind within the next week if you have the lump checked out and they tell you it's okay because it will just make you even more nervous this coming up week even though it's not related to BFS.

Karen

 

[Mike1980]

Barbo-
Hang in there. The pins and needles, vibrations and difficulty breathing can easily be diagnosed as sx of a panic attack. As I just posted to another message; I had them when I was going through my neuro stuff. Check out the Anxietycenter website and look at symptoms of panic attactks for more help. The lump could be anything including trigger points in the muscle. FYI, I had one that was close to a foot long and as wide as a pencil when my PT started in on me. Here is a link that illustrates trigger points, symptoms and areas where pain is referred

I have also used this to help me understand why areas were hurting for no good reason.

But remember, the idea behind stress and physical reaction. Our bodies respond in a primitive way to stress, real or imagined with the parasympathetic response (the 4 Fs of flight, fright, fight or sex); gearing ourself up to respond, including making muscles more tight and ready to go, making us hypervigilant, hypersensitive, etc. It does things without us thinking about it so we could flee from the rampaging wolly mammoth without the delay of thinking before doing.

Good luck.

Peace;
Kent

 

[IvanTheTerrible]

Thanks both of you for replying. First I want to say that I got a stomach twitch and then started twitching all over before I even knew about als. I think I will have the lump checked out to ease my mind a bit while I wait.As far as the vibrations I geuss mabey I shouldnt havedescribed the twitches like that because I know that that vibrating feeling that I have gotten before is panic of some form. The twitching I get in my hands and I have gotten the same thing in the back of my neck are just really really fast twitches but I know they are twitches. I have been diagnosed with mild copd in oct. so I think the breathing is that but this is the way I think. I keep thinking my lungs are not working properly because of als. My joints pop and crack like crazy and my period has been twice as long for a year now so I tell myself again ovaries are not working properly and joints are all related to als. I dont even know if it is possible. I do have anxiety I know that but that *beep* muscle twitch brought it on. I have my story posted in experiences with bfs if you want to look at it. I sneeze and my eyes twitch or even if I rub them sometimes, the other day I burnt my hand and my eyes started twitching. I twitch every day all day all over. I have had everything twitch even private parts. I think under my nails even twitch in some way. Well I geuss I am still worried and will be until june 8th but thankyou for taking the time to respond. Barb

 

[garymills]

Barb,

first let me say that I know what you are going through. The anxiety related to testing can be severe. I decided that my last set of testing would be my last unless I really started have severe symptoms. There was just too much stress associated with the whole ordeal. And I was sure they were going to find something seriously wrong with me. The fact is, they ruled out ALS . That was a relief, actually more than a relief. But you want to know the funny/sad part, I still don't believe it all the time. That's anxiety, it steals your joy, robs your relationships, and leaves you empty inside. It has taken me 11 months and three emgs, to get a grip on my anxiety, and I still fight it a little. Do whatever you find necessary to get over the anxiety. I personally just got tired of worrying, and decided to accept my fate, whatever it may be. Also, when I saw the damage I was causing my wife and 2 yr. old daughter, I stopped focusing so much on myself. That shift of focus was a tremendous help. So I would suggest that you find something you really care about and start taking care of that, instead of worrying about yourself. People may call that avoidance, but if it works who cares.

finally, I have to say that after one year with no major problems, you probably don't have anything to worry about. But guess what, you only have to wait one more week! Shift your focus, and find some joy. You are going to be o.k.

Hope this helps,
Gary

 

[IvanTheTerrible]

I just wanted to thank you kent for the web site. Where did you have your lump? I really think it is probobly muscle but I am not sure . Some days it is not as swelled and other days its more swelled. I have to use the arm all the time though and I know when I do it pulls at that area. Barb

 

[IvanTheTerrible]

Thanks Gary! You are always the voice of reason. I am so totally focused on me its ridiculous. I do Love my kids and husband sooo much and try everyday tofocus on them but I am always thinking about this crap. The whole thing about this that scares me to death is the thought of leaving them. That is what has really screwed with me I cryed everyday for months. I am glad you think I am alright I really need educated opinions right now. Thanks for the support again and I will try to find my joy again. Barb

 

[KatherineKim]

Hi Barbo. I can so relate to what you have said in your post.

This neuro crap has really taken me for a spin. And even though my neuro sx have subsided greatly, I am on some hyper vigilant health obsessive manifesto.

Now, I am completely convinced I have or am going to get melanoma. Ofcourse, I don't do the sun anymore but as a youngin' I had my share of sunburn, did the tanning beds as a teenager, etc, etc.

I have been to two dermatologists in the past month and am having ten moles surgically removed. He doesn't think any are melanoma at this point but ofcourse, I think he is probably wrong.

But now I have to wait to get into the surgery center and am convinced the wait is going to be too long.

My poor husband wants to plan things and even wanted to buy a cabin in the mountains for the summers but I feel like I can't make any long term plans and don't want my husband stuck with a bunch of real estate that could be hard to get rid of in the event he needs to move with our kids if something does happen to me.

So, yes, I can relate.

Kim

 

[IvanTheTerrible]

Thanks Kim! I know it is so hard to go through what we are going through I keep telling myself if I can only find out that this is benign I will be in such a better place. Of course I have played out in my head every worse case senario and its crazy!That is wierd you said that about the cabin because last june right after all this started I was in Tennesse in a cabin freaking out thinking I was going to die any minute. It has affected my marriage big time. Although some of the reasons it has affected it to me are very petty. I know my kids worry about me and I do my best to behave normally but I just am not the same.They can tell I am not the same, it is obvious. I just need to get to june 8th and God willing everything turns out good and I think no I know that I can move on and get back to myself. Barb