Reassurance Needed: Twitching & Migraines

Highlights Only
J

journeyer80

Well-known member
Well since i Have been coming back here I have been having a increase in twitches and symptoms and my old friends fear and doubt are returning is this a coincidence I am not sure but if any old timers or new??? can give me some reassurance I would appreciate it I think we all need it at times here is whats going onTwitching and dizzyness numbness mind fog joint pain occular migraines severe anxiety cold water sensations sleep starts recurrent eye styes shakiness weak and fatigued feelings now for the last 15 months I can still walk up stairs do push ups pull up anchors from 80 ft under the columbia river drive eat talk and swallow lately my muscles have been cramping a little small spasms some places little cramps others slight pinpoint pains others increased twitches random not one place specific buzzing sensations in feet I have had a foot pain in right sole for the last 15 months as well I guess whats got me most worried is these pains and spasms that are happening now never really had muscle pains or spoasms like this before they are by no means disabling physically more so mentally I have had 2 emgs a ncv 2 ct scans of brain one mri of brain 5 neuro clinical visits 45 or 50 er visits 20 primary care visits lyme hiv lupus ana cbc diabetes magnesium etc etc etc all the blood work all the strength tests everything was normal this was over a period of 12 months all these tests took place the only things I have not had are a muscle biopsy nerve biop and a lumbar puncture writing this out helps my mind some to realize I am just freaking out a bit but thats why I am writing it right ??? I like coming here to try to help reassure the new comer but sheesh I feel like one right now but oh well need all of your input so let it rip lolpeace Brian
 
So tripper is trippin again :LOL: Sorry just trying to insert some humor here. You already know what i'm going to say, and that is, I have every single symptom that you listed, and that is no lie, even the recurring sty in my eye. I've had this probley 5 times since this started maybe more, and never wanted to mention it here on the board, because I didnt know if it had anything to do with any of this. This stuff is ever changing, I'm finding, but it does not ever seem to progress so it has to be benign. I havnt had the biopsies or the lumbar puncture either. Neither test sounded like much fun in my opinion, and neuro didnt think they were necessary so I didnt push for them. I know it seems like there is no light at the end of the tunnel with this stuff, and I am sorry for that. I really do wish there was something that could make us all feel better. But we have to keep pushing forward because we all know that there are others out there that would kill to hear their neuro say, "You have a benign condition", "we cant find anything wrong with you". Right?? So head up Tripper, just like you told me many moons ago, things will eventually improve, and they will, I dont know how I know, but I just know that it wont always be like this, the body can heal when there is no disease in progress. And you and I have had all the test to prove that there is not. Take Care my trippy tripper :D) Your friendRobynn :D)
 
Tripper - It sounds like your resistance is really down or your system is a bit run down. Most people find that when they are stressed (physically, mentally, what have you) they experience more and varied symptoms so like Robynn said, it is just part of the whole "what now?" thing for bfs/bcfs/pnhe. Whatever you think is stressing you out - try to give it a rest and things should improve a bit. I have my whole thing I do when this happens - take some immunity boosters (herbal and vitamins) try to drink extra fluids and so some relaxation for like 10 min 2X a day. It helps me but it is individual - relaxation can be anything - listening to music, sailing, yoga, hiking, meditation so you know what you need to do - whatever it is where you can let your mind be free of worry and 'the to do list'.The muscle spasms with the pain are what has always bothered me the most hence my diagnosis of BCFS with the C for cramps. Even though the neuro said they weren't real cramps because in 'real cramps' the muscle can't be used. So another random name for a random syndrome. The twitches and weird sensations, while curious and odd, don't really bother me.
 
yeah Thanks to you guys I am better today just kinda tripped out yesterday hence the name tripper lol still twitching still cramping but better just a lil hiccup I know all I have is a benign condition I just needed to vocalize it to you guys that I was struggling a bit thanks again Hugs and handshakes Brian
 
Tripper – I’m sorry you went through a rough patch. I identify to all of the symptoms and frustrations, the muscle cramps are a real annoyance!Although I can’t speak technically, or with any degree of experience, I can tell you just how much I have appreciated YOUR insight and words of wisdom. I found your advice to focus my thoughts elsewhere, and just live – were so very helpful!!SO ~ the best advice I can provide – is the advice you gave me. Focus your thoughts elsewhere, and just live.Peace.Rob.
 
Trip -as I said to you in another post- YOU ARE FINE MATE. Let me know if you find out what disease you have, because if you have it we all have it!!cheers and chill. The fear will pass.Rodger ;)
 
Wow..50 ER Visits? What did they tell you? I admit I had 1 and I felt like an itiot. Anyway.. hang in there. We all have relapses wit the anxiety. I have found myself struggling a bit also but just think of all the tests you have had. Probably more than anybody here. You have to take reassurance in that and also that all of us here are in the same boat and are just fine.
 
HelloI am new here but a veteran twitcher of 12 years. So Many er visits . Wow I know how exhausting that can be. Have had some my self.I had a muscle biopsy and recently skin biopsy to rule out small fiber neuropathy ( tingling, burning, stabbing) btw.. I am so sick of being stabbed all day!! Anyways. I have had so Many test done my self and just had them repeat voluted gated potassium channel and everything is fine. Hope you are okay. And hang in these. I don't
 
 Hi Tripper,Wauv - this is spooky. Kind of a Deja vu-thing. I could have written your post myself - down to the comma's!We share exactly the same symptoms, and not 'only' the fasciculations. Had it just been those, then I wouldn't be to worried, but dizziness, brainfog, ocular-symptoms etc. simply freak me out. I can't find a reason why I have slightly blurred vision on my left eye. It's no secret that my major-concern is MS and these are all textbook-symptoms. People do tend to disagree whether fasciculations are a sign of MS or not, but since they are among several other symptoms, then it seems likely to me, that they are a sign of a problem in the spine - the lower motor neurons.However - like you I have no trouble doing 45 push-ups when I wake up and when I go to bed, run 5 km. in 24 minutes etc. I've had two MRI's, one EMG, VEP, SEP and the dreaded lumbar puncture which was a walk in the park. Didn't feel a thing - I even asked the doctor when he was gonna insert the needle. "it's been in for 30 seconds now", he answered … NO sweat, really.I also had all the bloodwork. I've seen five different neurologists. All tests, examinations etc. were flawless except for my knee-reflexes; they tended to be a little brisk. But only according to one of the neurologists (Brisk reflexes = sign of lesions in spinal cord?).Well - that should convince me and make me calm. But it doesn't. Why? Because being a Googler and a reader of MS-boards, I read people's stories of years and years with symptoms like ours, numerous tests, MRI's, neurologist-examinations etc. All clear. They were initially diagnosed with depression, anxiety etc. Sounds familiar? But eventually they showed evidence of lesions somewhere in the cns (central nervous system). And that's where I am. I'm just waiting for something to show up. To me it's not a question of 'if', but 'when'. And boy, is that hard? I've had my symptoms for three years this November and been concerned and anxious ever since. What a waste of life. Well, Tripper - please don't hate me for writing this. I know this is a board for comfort, but I feel you should know, what I'm going through since I have the feeling we are in the same boat more or less./Peter
 
Peter,I really doubt you have MS with all the testing you have had done but if you makes you feel any better, I know many people living with MS and they lead normal lives. Sometimes you just have to accept what is given to you. None of us are immune to any diseases but your twitches and sensory symptoms have nothing to do with any of them (this is what I have come to believe).
 
thanks peter I do appreciate the insight but to tell you the truth I am not scared of MS sure I wouldnt want it but if it had to be something other then BFS then MS is ok with me like barbie said I know of people who have ms and have led and still do lead perfectly normal lifes and if in our case we have it by some one in a million chance then it must be a real mild form since they have not found anything at all with all these tests and our symptoms are very present ....anyhoo thank you for your post I hope you are wellBrianPS. If anyone wants to make themselves believe they have something they DONT!!! then search google it will definately *beep* you up!!!
 

Users who are viewing this thread

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