Thanks for the Support!

[jessica619]

Hi Everyone!I've been lurking and searching the board for the past month or so and it's been such a help! Everyone seems very supportive and so well-informed!Here's the cliff notes version of my story --I'm 25 (going on 26 pretty soon) generally healthy, grad student. Back in mid October things started to go downhill starting with what I've called the "virus of doom". I had a couple of days with horrible stomach pain and unfortunately a trip to urgent care triggered some anxiety due to a seriously insensitive physician. This was the virus that never ended for me and I saw two other docs (my PCP and a doc at the University Health Center) who put me through blood tests etc and deemed it a virus. I was having some weird muscle issues at this point and thanks to google (ahh, my first mistake!!) I started to fear "you know what" given my weakness. I did mention this to the doctor who checked my strength (both did actually) and said it was excellent. She also said that viruses can do funny things to the muscles.Around the holidays I had finally beat the stomach portion of the virus but then came more intense muscle symptoms, and no surprise, twitching. I felt weak from time to time in all of my limbs and would have strange cramp-like sensations (not full on cramps) and what felt like twitches that waved throughout the muscle. The more extreme symptoms seemed to have worked themselves out, but the twitching continues (waxes and wanes). I just saw my primary care doc again about the twitching and she seems unconcerned and I doubt would give me a neuro referral. She said it sounded like i had some irritated nerves but it should work itself out. Is it rude for me to request a neuro referral if I can't keep my anxiety in check? I trust her opinion, but sometimes it's hard to shut up my brain. I have good and bad days, though lately not quite as good thanks to some chin tightness and freaking out about my tongue (I feel like I bite it from time to time while talking, though who knows, maybe i've done this all the time).I should say my strength is still good and I've pretty recently gotten back to the gym, and my speech is also fine as far as I know. And I tend to talk a lot. I was also wondering about vibrating...I've done some searching of the board, and it seems pretty common. For those of you dealing with it, is it localized to one limb or hand, or is it more diffuse? I've noticed it in my feet (left more than right) and sometimes in my quads and groin area.Thanks so much for any thoughts and advice you might be able to provide! Cheers!

 

[mommyLDN]

Hey Jess, good to see you finally made it on the board, welcome ) Told you I would get you on, well actually you should thank MSM, she is the one who got you on, LOL. Anyway, I wont waste your time, you already know that I think you are absolutely a BFSer, and everything about your story sounds completely 100% BFS normal. So many of us here have had or still have every single symptom you named off and I'm sure others will chime in soon, but dont be too disappointed if its not real active, things have been a little slow here for a while now, but there is lots of supportive people here, and you know where to find me if you need anything.Take care girlie ) Your friendRobynn )

 

[SmartMister]

Jess, Robynn is absolutally correct in what she said every last sypmtom sounds like bfs. If you are not feeling comfortable with what your gp told you I would absolutely ask for a referral to a neurologist as it will make you feel better and prove to you you don't have anything nasty. Trust me you will not offend your GP in anyway they do not care. Just do it for your own peace of mind so you can get back to living. I suspect the virus is whats got your nerves all hyped up and am glad to hear you have gotten back to the gym. Keep it up it helps. I am an exercise nut to and just lifted today and my strength gets better all the time depite the almost constant twitching and muscle stiffness in calves and feet. Robynn thank you for acknowleging me in your post that was very awesome of you. ) Well I hope I have helped take care.Mary

 

[jessica619]

Hi Robynn and Mary!Robynn, I just wanted to say thanks for all of your support! And Mary, thanks very much for your reply and getting me on the board! I'm still back and forth about the neuro, but depending on how things go I may give a call to my doc about a referral. My anxiety has been in check the past couple of days, but if I go through a nasty spell again I might need the extra piece of mind.Thanks again! Jess

 

[seadragonsovereign]

I agree wholeheartedly with MSM. My advice is to get the referral if you have any doubts. Even though it sounds exactly like BFS, very few of us here are actual doctors so our opinions are based on experience only. Mine started right after a virus 22+ months ago so your symptoms and my experience tells me you have BFS. Mine isn't getting any better (despite a bazillion attempts at things like diet changes, supplements, medications), but it isn't getting any worse either. Two big things have gotten me over most of the anxiety: when my neurologist told me "you've got BFS" and the passage of time. The only thing that I would add would be to seek a referral to a neuro-muscular specialist and not a "general" neurologist. There is a difference (I discovered this through "experience"!). Anyway, good luck and keep us posted!

 

[JohnnyRocket]

This sounds suspiciously like ...........BFS. Do whatever you need to do in order to put your mind at ease, but I would gladly bet my 401k stash on the fact that your symptoms are not indicative of anything sinister.As for the vibrating, I've had it a lot over the past 5 years and still continue to experience it. Over the years it has moved all over the place but at any one time it seems to be fairly localized. I hardly notice it anymore, but it is there.

 

[ionyZarrion]

Hi,I can see by your post that your a lil freaked about the als business just wanted to say that everything you mention sounds very very bfs-ey.(thats a perfectly acceptable usage..What?)Your chances of having als at 25 stand at around 2 million to 1(Im 27 and I LOVE that statistic) and bulbar als is well like just not on the radar with your symptoms... so I would advise you to not go to the specialist...well...Let your primary care doc decide...if he/she thinks its a road that needs to be travelled... then fine...travel it...but there are so many here(myself included) that could have the divine ordained king of neurology tell us we are fine and still freak out...so specialist does not = reassuranceTo accept the condition we share I think we just have to redefine normal and try to move on the best we can.Take care,Darr

 

[jessica619]

Thanks again for the replies! You all seem like fantastically supportive folks, and it helps just to hear from others that I'm not the only one with all this weirdness going on.seadragonsovereign, thanks for the advice. I'm going to continue with my pcp for now, but if for the sake of my sanity i think i need to see a neuro, i will definitely look into a neuromuscular specialist. The university hospital here has a branch for that I believe. JohnnyRocket -- thanks for the info on the vibrating. right now its been mostly my feet and thankfully has calmed down some the past couple of days. i kept checking to see if one of my kittens was laying on them and purring or if the computer tower at work was in overdrive!ionyZarrion -- I love those stats too and those were reassuring -- I just didnt want to google them and find all sorts of awful things. Thanks! I'm seeing a therapist to help with the anxiety (or at least try to help) but redefining normal isn't easy...especially since i'm a bit of a control freak that just wants to be able to fix it. :-/ I guess I just need to leave it to time...Thanks again everyone!

 

[JohnnyRocket]

No problem. I definitely get the buzzing/vibration in my feet as well. I'm glad to hear it has subsided recently, but rest assured you can expect it to return. Just remember that it is nothing to worry about!