Hi everyone I need some advise. I have been poorly on and off for 9 years which started of with severe eye pains in left eye ( lain when trying to move it ) lasted on and off for 2 days. Then on 3 rd day I collapsed and a & e thought I was having a brain bleed blah blah as lost the use of my left side. They scanned me and said no but they found an " old stroke " a lacuna and didn’t know what caused this episode: since that day I have seen urologist , gastroenterologist, cardiology ! As so many different symptoms. Also an ent for episodes of vertigo loss of balance. It was this May I started getting buzzing sensations in my feet which moved up my leg along with twitches. Which gradually moved around my body; I now get muscles spasms , stiffness, pain and I feel like I’m wearing socks ( but I’m not) and have symptoms of peripheral nerve damage, had an EMG and NCT was normal. I’m now bed bound most days and no one can tell me what is going on ! I have had an mri which showed up 2 lesions and lots of white intensity foci? What ever that means. I was the. Referred to neurology and he’s diagnosed chronic fascialtion syndrome due to chronic tiredness !! I do not believe this is this. I’m concerned as week by week getting more tired and muscles weaker and losing weight. Also prior to this I used to get episodes of what felt like red got ants crawling all over my skin ( wild appear from now where for a week or 2 then disappear for months ) then come back! I’m so tired and anxious now and also get muscles spasms in my abdomen which you can see and it squeezes me in like right squeeze from the side and you can see it. I have videos of the twitches and spasms. What do I do ? I know I don’t feel right ? I also have episodes of SVT . Thanks
Hi can you explain
FROM what i know of this a normal EMG result is used to eliminate more serious disorders from potential diagnosis. BFS is not usually presented as a first call for MS. BUT other disease. Have you been tested for lymes?
Your neurologist as given you a diagnosis based on tests and results. Now the more you worry over this the worse your anxiety gets and this will have a negative effect on your life.
9 years ago you obviously had something happen. can you remember anything specific back then? this could have ultimately triggered an anxiety which is becoming or taking over your life. I am being brutally honest here, as i can see you have had something going on but after 9 years the neuro has told you what they perceive it to be.
why cant it be BFS? It actually matches all of your symptoms for now. I am not a doctor nor possess to be an MS professional but i would personally after trying to get answers for so many years from first episode in 2000 say this does not sound like MS. Have you had your bloods taken you could be low in magesium, or b12. maybe try to up your magesium. are you eating properly. who looks after you? I really think you need help and support to get out of bed and walk around and improve your muscle tone. the more you stay in bed the more your fatigue actually gets worse, as your muscles waste away.
PROOVE him wrong! Get moving and try to get fit, ask for help with the fasciculations a beta blocker will help them and your anxiety too.
My daughters friend presented very similar to you for 10 years when her vertigo got worse and worse, everytime she stood up she fainted, and after a stay in hospital was diagnosed with POTS and is now finally on the road to recovery. I could see her spasms and her fasciulations it was horrible to watch, but she is much better now and on medication. so it presented itself eventually.
diseases usually do, but we encouraged her to get up and out, and with her horse she was given about five years ago it gave her joy and she learnt to live with whatever was going on, and suddenly because she wasnt focusing on it, it came out and blam she was diagnosed throught a tilt table. a simple table test.
so dont give up hope but get fit, dont let whatever it is define your life. You have to prove to specialists there is something going on. I did that too and MS did show itself.
I hope you understand what i am saying. your lying in bed thinking about having MS, when you may not, and your body is becoming weaker and more symptoms will show as your muscles deteriorate. you have to stop that from happening.
thats about all i can say really, I feel for you really, but you have been diagnosed with BFS which in itself could be a sign of other diseases, but your EMG ruled it out for now. something happened 9 years ago because there is proof of that so start there.
You really need to get up and out for fresh air, dont let this beat you. big hugs. Like i say proove them wrong or ask for a second opinion.
Thanks for reply I will get second opinion and I don’t know what it is but something is going on for sure: