Sharing My Story: A 28yr Male

[Codemonkeys]

To all,

First let me say this forum is a life saver. I am 28yr male and I have been hanging around for a couple of weeks and I will say it is much better than the *** forums. At least it gives me some hope. I was a college football player and I am 6'3 220 with good strength. I know my body too well and that makes this even scarier. I have similar stories than most except for a few things. Sorry for the lenght. My story is as follows:
*neck problem with pinching sensations from old football injury. Feb 2007
*Problem with my throat in March 2007. Extreme pain when trying to project my voice. I saw 3 ENT's and the final one said that it sounds like a nerve problem as he didn't find any problems with the scope. Referred me to a neuro. However got married and went on honeymoon and never saw the neuro. It eventually got better although I don't know if it was totally healed as I would notice my voice getting tired and weak with normal talking.

* Tingling in right hand which then returned more severely into my right forearm. (it felt as I could feel every nerve in my arm as I flexed my fingers. Tingling in my lower leg into my second toe came with the severe tingling in arm. This was May 2007 which prompted MD appointment. Checked out normal for thyroid,lyme etc. Referred to a Neuro. This tingling lasted about a week then went away. Due to it stopping I didn't make an appt. for the neuro.

*Over the next months I noticed that my right arm would fall go numb while I sleep. This was really unusual and I just assumed I slept on it wrong. This wasn't tingly asleep but dead numb. Like i didn't have an arm. I would sit up and wait for it to come back. It became more and more constant. I also noticed twitching in that arm. My tricep or shoulder would twitch for 3 days straight. I showed my wife but didn't make a big deal about it. I also noticed that my muscle tone was looking more fatty although i just thought it was my diet and lack of excersise. When I did excersise my muscles were extremely sore and stiff afterword. Of course I was not as strong but that was normal due to my lack of excersise.

*December 2007 i was working on my computer when i felt a buzzing sensation in my left foot. As if I had a vibrating toy in my foot. I couldn't see the movement however i could constantly feel it. This was really unusual to me. This actually scared me as it did not go away after a few days so I finally made a neuro appt. I informed her of my buzzing and twitching which I had noticed over the months before, along with my arm going dead during sleep. The doctor examined me. No loss of strength heal, toe, grip strength, reflexes good etc. She said whatever I had was benign. She did want to do a serum CK test for MDistrophy but did not think an emg was necessary. I left the doctor visit and went straight to my brothers College graduation. During this I started getting twitching in my legs and my legs were weak/unsteady. I just shrugged it off as the 3 hr drive. My upper right arm and shoulder started getting heavy weak. Like I just worked out for days and the muscles were fatigued. Felt as if i couldn't lift my arm above my head. However it did not stop and when I got home my legs were real tired. That night i noticed both arms going dead and this is when good ole google kicked me into dying mode. I googled twitching and weakness and bam ***. That sent me into a severe panick and depression. I called my neuro back and insisted on another appt. due to the weakness. I was convinced it was either MS or ***. I actually was hoping for MS rather than ***. Who hopes for MS???? I asked for an MRI and EMG which the doctor granted although she said it was not necessary. MRI on brain came back normal and EMG/NCT normal. A physiologist did the EMG though. She said that there was nothing wrong and I needed to relax. She prescribed xanax and said to got see someone for anxiety. She gave me another exam and said that I did not have any clinical weakness and that she diagnoses 2 *** per year. I know weakness wasn't evident but compared to my normal strength it was weak. I know my body and something is off. My left arm is now getting weak at night. I have been on xanax for 2 weeks and my twitching is still here. I can handle the twitching but it is the weakness that scares me. My voice has been getting weaker again and this along with my weakness is scaring me to death. I saw a chiropractor and he said i had a reverse cervical curvature but nothing pinched. Nothing wrong there to cause these issues. I don't know where to go. Should I get a second opinion? I read everything in here on clinical and percieved weakness but maybe due to the amount of strength and muscle I had before, the progression is taking longer. The weakness hasnt gone away although it isn't keeping me from holding, grabbing, lifting things etc. I read bfs in a nutshell and that kind of helped but the weakness doesnt come and go. I had the emg when I just noticed the buzzing a weakness. Was that done too early? I know thought that a clean emg/nct doesn't necessarily rule out ***. My wife and I are expecting our first child this month and Im doing my best to keep from stressing here as she is 9 months pregnant. Can anyone share with me any advice? I am in need of some support. Everyone thinks I am crazy. Sorry for the long message. Thank you all for your responses in advance and god bless. Happy New Year!

jimmy

 

[ristinaL91]

Hi Jimmy,

I am sorry to tell you that your story is an all too familiar one. There is nothing new, or troubling here. Sorry, I do not mean to be rude, but you have BFS. You are too young for ***, and you don't have the symptoms.


You did all the correct things, you saw the correct doctors, had the tests. They concluded that it was not ***. I am not sure what you do have....I am not a doc, but is sounds amazingly similar to the rest of us here, BFS. Couple that with, I am sure some old football injuries bringing in the other ailments, and there you have it.

Please read BFS in a nutshell, it is a sticky on all the forums here. It will answer so many questions that you have.

Tonight is New Years Eve, and you are a newlywed.....I can think of a lot better things to do on this night then worry about something that you do not need to worry about. Skip the xanax, it will not stop twitching, or buzzing....it will only help to relax, and have a glass of bubbly instead!

You will be here to usher in many more new years, I will bet you on that one! Congrats on the baby, sounds like you have a lot of good things to look forward to in 2008...and nothing bad.

ristinaL91

 

[NinaC2005]

Jimmy,

I agree with ristinaL91. A couple of points I've learned on my own BFS slog:
Numbness and tingling are NOT signs of ***; while they could be signs of MS, you had a normal MRI and MS symptoms don't come and go every couple of days or only appear when you're sleeping. Since all your exams have revealed nothing pinched, I'm not going to speculate but it sure isn't *** and doesn't sound like MS. That, and all the docs you've seen haven't expressed concern either--it's hard to do, but you (and I/we) have to learn to accept what doctors tell us, especially when the tests they conduct, like your EMG, are clean.

BTW--I've never, ever heard that a clean EMG does NOT rule out ***. You were already exhibiting symptoms such as twitching and (likely perceived) weakness when you got the EMG; if you had ***, the EMG would pick it up--even before symptoms appeared in some limbs; so it wasn't too early, either. Likewise, your speech/voice problems seem to be ebbing and flowing; again, *** doesn't come on, get better and then come back. Nor does weakness come on only at night, and clinical weakness is just that--there is no doubt about it. Like you, if I slack off on the exercise, my strength declines. Plus, *** usually, if ever, doesn't set in all at once in all your limbs, or even in both arms at the same time.

Xanax is not effective for twitching; you'll find here that precious few drugs are. I have been diagnosed with anxiety and believe me, it can ramp up your twitches, sap your strength and even cause the speech problems you cite. The numbness and tingling? Could be anxiety--according to my psychologist, but the numbness is probably something else, maybe in your arm or neck (did they do a cervical MRI or just on the brain?)

Misery loves company--we all know something, as you put it, is "off" with our bodies. But listen to your docs; a second opinion is fine, especially on the numbness (been there/still working that), but WHEN they also tell you it's not *** or MS or impending doom, take a breath, give thanks and accept it. Your buzzing and twitching, as well as many of the other things you described are shared by everyone here. You're NOT crazy either and it's not "all in your head," but anxiety will really mess with you. Enjoy the New Year and your family and stay off google, webmd and all those other sites. Information presented out of context is worthless.

You'll be fine; welcome to BFS. It's not a lot of fun but it sure beats many of the alternatives.

Happy New year,
Mark

 

[Codemonkeys]

I would like to thank you both for your prompt responses. I really do appreciate your feedback. I am doing my best to win the psychological battle. I haven't had to deal with something like this before. My doc recommended a Psychologist. Has that helped you? I did have a cervical MRI and it was normal. I want to get a second opinion and still may. The constant weakness is enough to drive me crazy all day. By your message I assume you have the tingling/numbness/buzzing as well. Let me know if they find anything out for you in regards to that. I am a high energy and happy person but don't like this depressed state I am in. I played Big 10 football and now feel like a broken down car. I wish a Happy and Safe New Year to you and your families.

Jimmy

 

[NinaC2005]

Hi Jimmy.

Big 10, eh? I am an alum of Indiana University, though a native Ohioan and a fan of Ohio State.

Anyway, I have found the psychologist to be a great help in keeping my perspective and I have gotten my life back on track after a couple of rather dark months (this site proved even more valuable). I'm not happy with being on Wellbutrin for anxiety and mild depression--drugs such as these are a big sign of weakness where I come from--but I had reached a point where fear and anxiety were interfering with my work and, more importantly, my family and social life. I'm down to an appointment every couple of months and should be off the meds by February. Like you, I let my exercise schedule fade and that's the worst thing we can do--so I'm back at it, running 20-25 miles a week and sticking to my other workouts as well. Despite the fatigue and malaise you're feeling, exercise is one good way to get on top of this nonsense.

The buzzing is part of BFS and shouldn't be a source of concern. I am embarking on 4 weeks of physical therapy--at my neuro's direction--to deal with the periodic numbness in my hands and the tingling and weird sensations in my legs. An x-ray indicated that I probably have disk compression in my lower back but the nerve test/EMG found only mild carpal tunnel in my hands. The numbness I have is on the outside of my hands and involves my little fingers--that's not carpal tunnel. The doc suspects I may have a pinched nerve in my neck but my insurance won't cover an MRI until after I undergo PT in this case. Go figure. Under no circumstances am I anywhere near ready for back surgery, however!

You've had great clinical exams, a good MRI and a clean EMG--that's a winning trifecta as far as the "bad stuff" is concerned. Bottom line is you're young, healthy (yes, though you may not feel that way), have a child on the way and a lot to look forward to. I know it's easier said than done but focus on the people and the things you love and the fear and depression will subside; we've all been at one time or another where you are now. BFS--which you appear to have--is annoying but benign; once you get your mind around that, a lot of other things will fall into place.

Congrats on the baby--get as much sleep as you can now, especially before the little one becomes a teenager !

Happy New Year.
Mark

 

[JosiahManning]

Okay, Big Ten right handed QB named Jimmy--alas you revealeth too much, I'm going to have to figure out who you are (if for no other reason than its really cool to be corresponding with a former D1 college quarterback). I know one guy who used to be the starting QB at Texas A&M--in our flag football games he would just waste the rest of us saps. It wasn't even fair. You must be one heck of an athlete.As one former football player too another (hmm, maybe there is a connection too much battering of the spinal chord/neck over an extended period), I can tell you that you have BFS. I have had almost all of the same symptoms as you, and 7 months and 2 EMGs later, I'm still doing okay (with the occasional anxiety induced speech difficulties--still haven't entirely licked that yet). Keep going to the weight room, keep exercising. I've found that the only thing to suffer since onset of BFS is my running stamina (though I can still go 2 miles without too much difficulty), but everything else seems okay (I'm actually up over 320 on the bench press for the first time since college). Working out reduces stress (a key to combatting BFS) and reassures you that you are pretty darned strong after all. As to some of your throat/speech symptoms, I recommend that you look into TMJ/GERD as both can impact your voice/word formation. I have both, and combined with the BFS anxiety, I think that is the root of most of my problems. Thought about doing cognitive behavioral therapy (CBT), but haven't gotten around to it. Too many things to do with work and family. I know it has really helped some people on this site though. If you have a clean EMG and clean neuro exam, there really is no chance at all of it being any kind of MND.Good luck and hang in there. If you ever need any specific advice, feel free to PM me.J.

 

[Codemonkeys]

Hey JosiahManning,Thanks for the reply. I was a good enough athlete to compete Division 1A. Although, as you know, the talent at that level is pretty unbelievable. I have many old friends playing in the NFL still. Its both a blessing and now a stressor as I don't feel that my body is what it once was. It doesn't feel the same. I figured this would happen eventually but im only 28 and dont think it could happen that quickly. I am going to make a dedicated effort to start working out again although it is a lot more difficult these days with work and family. I will look into the TMJ/Gerd. I actually did get diagnosed with Gerd 2 years ago by an ENT, I forgot all about that it as it only seems to bother me when I get stressed. I better start taking my nexium again. Thank you for the reminder. That just may be my voice issue. Thank you again for your feedback keep in touch and good luck to you.

 

[anyMillers]

HI,I haven't been checking this forum lately becauseI have been feeling so good, but I felt compelled to tell you that your story sounds so much like mine. I started with this a year ago and thought I was dying etc. I am a very active person and a nurse. I imagined all the horrible things...I even took out extra life insurance. I think that I had a post-viral syndrome because my twitching ,cramping and weakness all seemed to happen after a gi flu. It took about 6 months for me to become me again. I have never been so frightened before. The neuroligical diseases that we fear do not present like you have described. If only the Doctors took the time to explain why they are telling you that you don't have MS or ALS you would be spared the torment. It took another BFS support member who had seen an ALS specialist at the MAYO clinic to explain these things to me and put my mind at rest. I realized after that alot of my symptoms were caused by my back and years of nursing.Do not GOOGLE anymore. Take the time to let your body get better and enjoy your baby. Everything is going to be ok.Sincerely,Beth