exploringexistence
Well-known member
I have been twitching now for 5 months. I took a break from this site back in May because it seemed whenever I came on here, I'd run across a post where someone brought info over from an *** site and it would send me into a panic. Now here I am back, still in a panic. I had a very thorough (15 spots checked including tongue), clean EMG back in April, only 3 months ago and since then a lot has happened. I finally saw the psychiatrist my doctor referred me to in May and he was TERRIBLE! He had absolutely no compassion and told me he wouldn't talk about *** which I found to be ludicrous since how can we not discuss my fear if I am to overcome it? He also told me that he didn't know whether I had *** or not which gave me further doubt.I also began experiencing terrible muscle cramps and spasms in my back. I had tightness in my muscles, and my tongue as well and it made me feel as if certain words were coming out wrong. I felt like I really slurred too and words were hard to pronounce. I was in such a nervous frenzy that I made an appointment with my neuro. He had wanted to see me in June but I just had to see him early in May. I was a little iffy about his bedside manner the first couple times I saw him but this time he was so nice. I felt completely blessed. He literally grabbed me by the arm and told me I did not have *** and that I should go out there and enjoy my summer. I left feeling better but of course my OCD took hold again and the doubts just kept coming. It didn't help that I was getting sick and needed to take my Albuterol to assist in my breathing. I have bad Asthma. My twitching went crazy and the tightness grew worse. I felt like I was going to lose my mind. I also had my tongue start to feel numb too. I went to see my GP for my Asthma and sickness and she said I had Bronchitis. She attributed the muscle tightness to the Albuterol I was taking to help my breathing. She felt that it would improve when she put me on the antibiotic and prednisone and I didn't need to take the Albuterol so steadily. Well it didn't. I was on the Prednisone for like 3 weeks and I felt like it took me forever to get better. I even also lost my voice and could barely speak which of course I thought was further proof of bulbar symptoms. The tightness continued even when I got off the Prednisone. My ankle felt like I had on a tight sock. Then I start to notice all the twitching practically goes to my mouth, tongue twitching practically all day, floor of the mouth twitches, roof of the mouth twitches. My tongue tingled and had numb sensations. I was gripped with fear. I started making calls for second opinions in my area and they were telling me they could get me in for October at earliest. I asked who did their EMGs and they told me it was the guy that did my EMG. I was totally shocked to find out he is the go to guy around here and considered the resident expert on reading these things. Well then I decide to make an appointment with him since it made sense since any other neuro would just send me to him anyway. Well I call him and thankfully since he saw me before I got an appointment in 2 weeks. It felt like an eternity though. So I go to see him and the guy SCARED the crap out of me. Last time when he did my EMG we didn't really talk so I couldn't really judge his bedside manner. This time we got to talk. I come to find out he is an *** specialist. I was floored. I had no idea. He worked at an *** clinic for a number of years. I told him my tongue was twitching and felt tight, tingly, numb at times. He examined me, like a half hour exam. He gave me the Babinki reflex test (my toes didn't move but I guess that's normal.) I found it weird since when I test myself they always go down. Then he does a bunch of bulbar tests. He made me puff out my cheeks, examined my tongue for bulk and movement. He watched it in my mouth and said he didn't see any twitches. He said he wouldn't do another EMG since he said I had a perfect clinical exam. After the exam was over, I asked questions and that was where I made the big mistake. I won't even say what I asked and what his answer was here since I wouldn't want to depress anyone else. Even though he gave me a good report, his answers to my questions erased it all. I went home and cried for days, figuring I was a goner. So I call him the following week, practically in tears and God bless the man this time, he tells me he will test my tongue again but just the tongue and that's it. So two weeks ago, I went in for another tongue EMG. He stuck me right through the tongue two times and he kept that needle in there awhile. After it was over, he said "I couldn't go much deeper than that." He also had me look at the screen and said to me, "What do you hear? What do you see?" So I told him and he said, "You're going to live kid." So I felt so good but naturally it was short lived. I keep getting such weird things with my tongue. I have been obsessed with this bulbar thing since the getgo practically. My tongue symptoms seem to just get worse though. It tingles like all day and sometimes feels burnt . Sometimes my mouth feels so inflamed and extremely painful. Then I get this other thing too that's hard to describe but it's like a tightness and tingling at the same time that ripples across my tongue every so often. I mean what's going on and it just won't let me let go of this crap at all. My muscles still feel odd and now I have a hotspot in my stomach. I just feel like what's the point of going on anymore if I am going to die anyway and even if I don't have ***, this is no kind of life. I am auditioning a couple new therapists, both CBT , but I feel so hopeless at the moment. I just really hate myself and feel like this is all my fault.Nettie
) but I've had the back ones on and off: sometimes if you warm up the area (real heat or exercise) that will drive off the spasm. A really warm bath can help. I did have that plain tightness feeling for a while but on my throat & neck - like constant pressure but it went away and comes back occasionally. I just started getting the ones under my ribs which was a little scary at the onset since they're close to the diaphram but it has been alright. See what I mean? Most of us could go on like this for pages.....If you've had bcfs for a half year or more, chances are you have been 'lost' in this thing physically, mentally, or both. I'm not an anxious person so for me, it gets bad when I'm over-tired or am stressed from general life stuff. It is hard for me to understand how so many people here look for more trouble then they've already got in wondering if they have something worse. We all get 'tired' of ourselves and our imperfections but don't let it depress you - as you can see from visiting here, you are not the only imperfect human.....it is hard to not be wishful for our past imperfections when you have this syndrome. Some people do with a lot less then we've got. A friend of mine got hit by a taxi last weekend while bike riding. She will be OK eventually, but it was soooo close. There it is: we all only have a certain amount of time to live, we really have to seize the moment and squeeze out of it what we can.