Going Backwards: Neuro Struggles

[angusglover]

Well, after all of my trips to the neuro etc, I seem to be going backward.My eyes are twitching, non stop. Not just the bottom eyelid, but the top ones as well. It is more like a spasm than a twitch. I have a strange "sensation" in both of my arms. My arms now feel very fatigued very very easily.I get spasms and twitches in both of my hands. My left one seems to be 24\7. My legs feel very tired and sore. I am kept awake by the pain in my thighs \ hips all night. It is kind of like a dull ache but painful nonetheless. I feel a bit disoriented at times and do have some balance issues.I do not have any weakness as far as I can see and my neuro says he can find nothing wrong. I did have an MRI of head and neck but that was back in March (ish) and all was clear. My symptoms seem to have moved on a lot since then. My neuro did mention MS but said that he did not think I had it. MS does fit with the burning sensations etc that I get in my feet and hands and the sensations in my arms though. I have my brain scan on Friday, will that show if I have MS? I don't think it will rule out ALS but the lack of weakness has done that in my mind.I am so scared...it is seriously starting to affect me now. I lay in bed last night in a panic and I thought that my heart was gonna burst out of my chest. I did not want to mention it to my fiance but I am sure she is wondering what is going on. I am not sleeping and starting to really worry.I know that anxiety can cause some symptoms but these are all too freaky...Can anyone relate to these symptoms?

 

[EyeoftheWild]

Hell yeah. That is pretty normal for bfs symptoms. Burning is common with our syndrome, and I've had it bad a couple of times. Once it was so bad I couldn't even move my legs at all without intense burning. I was a little concerned, but it went away, and I am completely fine. When we are worried we feel off-kilter, and we can also feel disoriented. You feel what you feel, but it isn't MS. I've had exactly what you describe and it goes away; whatever it is. Read back posts by LisaLM. She was actually unable to move at one point, was diagnosed with MS, started treatment, only to discover that she did not have it. Bfs can exacerbate viruses and so our bodies do not behave the way we expect them to. However, we get over our little hiccup and are no worse for wear. Basso

 

[cindyandco]

Angus: I have experienced what you are talking about. The burning sensations were really bad about this time last year. I would feel like hot water was thrown on me. When I moved from a resting position, it felt like a shower of hot sparks on me. I haven't had that in months, but who knows when it could recurr. It sounds to me like your anxiety it causing the symptoms to really flare. I have gotten my anxiety to a manageable point and my bfs symptoms are MUCH better---still twitch, but not so much. I will tell you that tonight I was running up the stairs, tripped, fell and jammed my left thumb. My first thought was-----well, you know what my first thought was. WHY do we jump right back on that wagon?????Try not to worry too much---you'll feel if you don't let the anxiousness get the best of you.Cindy

 

[matthewcynickysam]

I totally understand where you are coming from. I often suffter "burning" in my legs and my arms. They feel like i just did a two hour workout at the gym. This BFS totally messes with your mind. I know its easier said than done but dont let it. I had an EMG 3 months ago with a neuro and a follow up exam last week and again he told me it is BFS. You just have to learn to trust your doc and know that if you had such a catastrophic neurological disease that they would be able to spot it. Your mind is very powerful and can really mess with you. I am sure you are fine. Good Luck. Now I am going to try and practice what i preach )

 

[angusglover]

Thanks GuysFor weeks now my arms, from shoulder to tips of fingers, have been twitching non stop. They are not twitches I can see, but seem to be deep in the muscle. I can feel them though. I also have the same in my legs, mainly round the thighs. Again, it seems to be deep.I have a weird sensation all the way down both arms, which seems to get worse when I try to exert any pressure on them.I had my brain scan on Friday and have a follow up with my neuro on Friday next. I am so scared that this is one of the bad ones!!! You all know what I mean. My neuro is of the opinion that he has no tests left that he can run to determine what the issue is. I do seem to be getting worse, although I can still run up the stairs and do press ups etc. Would a muscle biopsy be a good test to suggest?Scared? That is an understatement!!!!! Terrified.....

 

[AllGoodHere]

Hey Angus - If there was anything awful in your brain scan they would have called you by now, right? The testing and waiting can be difficult though even if you are not afraid as it is always there in your head (brain's version of spyware). I've had the burning thing also, in my feet mostly, but it passed. It just may be a natural progression of symptoms, at least that is how I see it. Most of us can look back over the years and say 'oh, yeah, I remember when I had that!' SO try not to look at new symptoms as some nefarious plot by your bod to spiral down when it could just as well be a progression that you need to go through to heal. Think about it - for other stuff, the healing process is not always pleasant so why should the nerves be any different? Good luck on Friday and let us know that you are fine - we like to hear it even though we suspect it .............

 

[KnottyPirate93]

Hey there,I noticed that your join date is January of '08 and I'm sure that was after the onset of your symptoms. So, you've been dealing with this for I'm guessing around a year at least. I am certain that you would have had some serious progression if it was one of the "bad ones". My grandmother was diagnosed with Peripheral Neuropathy of both legs which left her incapacitated for nearly 5 years. She had burning, shock like feelings in her legs from mid thigh down that entire time. She did not have twitching that I know of, but it showed up one day, tormented her for 5 years and then left just like that. The nervous system is complicated and extremely slow to heal, so we need to give ourselves time. I am still dealing with all of this nonsense and it's been over a year, but I see no progression.....just transition. My symptoms are somewhere for a few months....then something else shows up....then something else. They are transitory but painful, annoying, and if given more weight then necessary, they are frightening. Just remember what Kit always said. "When you hear hoofbeats look for horses not unicorns." Makes a LOT of sense. Shauna

 

[angusglover]

Yeah, it has been a year since I first went to the Doctor with weird twitches all over my body.The last few months though, my left arm and hand have been twitching 24x7. I cannot see the twitches, but I can feel the muscles pulling and twitching under the skin. They even move the fingers on my left hand. My right eye is also twitching 24x7. The top and bottom eye lids just twitch or spasm all the time. I also get random twitches all over. I will get a few twitches in my buttock, then they will dissapear and appear on my leg etc.I have found that lifting my arm up to brush my teeth results in a tired feeling.The most annoying though is the "sensation" in my arms and legs.....it just does not go away and feels like weakness but even though I am not moving them. I can find no other way to describe it.There is a TV prog on tionight about the guy that had ALS and went to the Swiss clinic to die. I am not going to watch it however.....can't face it. Saw my dad go and that was enough....I have my neuro appointment on Friday and I am sure he is going to say it is clear so will have to ask who I can be referred to for further analysis. I do not want to keep having these feelings and have no idea what it is that is causing them. My EMG was very very brief, basically 1 needle in the leg and he said it was clear. I would like a more detailed, in depth EMG as that may point out an area for investigation......but how far do I go?

 

[angusglover]

Well guys...My brain scan was normal )Since I have most of my annoying symptoms in my left arm, and I already know I have an Ulnar Palsy, my neuro is recommending I have the op to move the nerve to the outside of the arm and then redo the EMG \ NCV tests at Easter time to give the nerve time to settle down after the op...So, I am going to try and forget about it and just have the op...Stay Well guys...