Questions About Paresthesia Symptoms

Hi there - I have a been having symptoms for 6 or 8 weeks now I guess. I'm naturally worried about the same things everyone worries about here - the dreaded ALS and MS, and who knows what else. I have a couple of questions.My symptoms really started with paresthesia (pins and needles, numbness, odd sensations that started just above my upper lip and moves in bands around my body, mostly face legs, feet and hands). At first the paresthesia was isolated (lip only) and went away, now it is virtually constant. The muscles twitching was there, but didn't become truly bothersome until a week or so ago, now they happen frequently throughout the day, although paresthesia remains my constant symptom. One thing I experience that I'm not sure what to call - my thigh muscles in particular seem to be 'grinding' away virtually all the time - I wonder if this is what some of you call 'buzzing'. I can't see the muscle moving, it isn't really a twitch, but more than pins and needles - perhaps something like a vibration, like an engine quietly working away?? Is the paresthesia common for most of you, or just occasional? Do any of you experience near constant paresthesia?The muscles in my calves and thighs have twitched my whole adult life after exercise or if I'm really exhausted, as in after an long-haul flight flight or something like that. I thought everyone experienced this - apparently not. I'm not sure if this is a good sign or not that I seem to have always had more twitching than a normal person. Anyway, I was never concerned about this twitching until the recent constant episode of twitching coupled with near constant paresthesia.I don't think I've lost any strength - I do all the self-testing - walking on toes, heels, etc. My husband says I can still crush his hand pretty well. I do have weak spells - kind of like if you haven't eaten all day and you feel a little light-headed. This symptom is particularly worrying I guess. I've seen a doctor who did a basic exam and found nothing unusual, now I must wait for my neurologist app't.I thank all of you who so generously take your time with us terrified newbies.Best,Paula

Paula,I am glad you found this site. I hope it helps you as much as it has helped me, although one year later I still have little in the way of real answers to why I twitch all over and have pins and needles feelings too. The grinding feeling in your leg that you described happens to me too. I have described it as a growling almost like the sensation you get when your stomach growls because you are hungry. I get vibrations and buzzing too. I have been told all these sensations are the same thing--nerves firing when the should not. I would take great comfort in the fact that you have had more twitching than normal for a very long time, even though it is now much worse. Just that fact would indicate to me that you have something that has long been part of your makeup and is flaring up for some reason. I have an embarrassing number of posts on this board, which if you care to read you will see that I have been through it all. I don't really recommend that you read them though because I am coming to the point of realizing that if the neurologist doesn't know pretty easily what you have then unless something dramatic happens (like you can't move at all or become very disabled) then you will just get an educated guess like bfs or immune-related neuropathy or some hereditary neuropathy etc. All of these things appear to be very speculative but real phenomenon. If they don't involve disability, they are just left alone and the symptoms are treated if need be. I thought I could get a 100% all clear of the scary diseases you mentioned but I only got 99% all clear. Well I did have one neuro tell me 100% but if they all don't then it is still 99%. I asked too many questions of too many doctors and read too many articles on too many neurological conditions and realized that the cause of muscle twitching and nerve tingling is just not an exact science and without disability no one will find it worth probing too deep. If the dramatic does happen, there are treatments that often work but they have risks. It is only when real disability hits that the treatments are worth the risks. The fact that the treatments work is where you get the closest to a real answer to what is going on in terms of a cause. I don't know if you are looking for advice, but if you are I recommend seeing the neurologist obviously and if you are not physically suffering and can function then just focus on that and the high likelihood that this will never progress into anything worse since it doesn't for many people (including the hundreds on this board) even if they never know what exactly is going on. If you are physically suffering, talk to your doctor about what may help and get the advice of others here who have tried the various medications. Finally, come to this board for support since we all understand each other and the ups and downs of dealing with such a strange, poorly understood condition.Krackersones

Hi PaulaWelcome to the forum. I note that you have had quite pronounced paraesthesia which obviously puts ALS out of the running, sine this causes motor symptoms only. As you will see from the resource info on the About BFS website, the Mayo Clinic study shows that a good percentage of BFSers get paraesthesia and as you will have seen from lots of other posts on this site, this symptom is very common. The sensation in your thigh muscles might well be from paraesthesia or from fasciculation of a deeper muscle that you can't see but either way it doesn't sound remotely sinister and certainly strikes a cord with me, as I get this symptom too. It sounds as if you have been prone to fasciculation throughout your life and this has never really troubled you but that the frequency and severity of this pre-existing twitching has ramped up because of your current problem, either directly as a result of BFS or maybe via the stress and worry you are currently experiencing, along with using the muscles in an unaccustomed way to self test (stop this at once - you're on a hiding to nothing doing this... I have done untold damage to my muscles by self testing!!!!)Your description of 'weakness' is nothing to do with the weakness associated with progressive neurological disease - a global sensation of light headedness etc is a far cry from a paralysed limb!I think you can afford to lose no sleep over your symptoms between now and your specialist visit and I am confident for you that you will be given the all clear. Don't be disappointed if you are asked to go through the usual tests (EMG, bloods...) as this is all par for the course.Good luckRegardsSimon

Paual- My BFS started with parasthesia. I had the pins and needles in my left foot for two weeks or so before I started to notice the twitching. Listen to Simon, sensory symptoms are not part of the nasty diseases we've all feared. See your neuro and get reassurance, but take solace in the fact that what you've described sounds just like BFS.Not sure why some on here would go down the road of talking to you about progression, disability, and treatments and neuropathies when all you've really talked about is twitching and anxiety over twitching, but please try to keep such thoughts out of your head. DO NOT think about such things because progression isn't part of BFS and thinking and worrying about this will just cause you to do more self-testing which will then cause other symptoms (muscle soreness) that you'll mistake for progression. Anyway, as you'll read here, anxiety is a huge aggravation agent in BFS. If you let the worry and anxiety get the best of you, no doubt your twitching will increase. Given what you've described as far as a long history of twitching and more recently parasthesia, this sounds totally benign. Lastly, the weakness thing doesn't sound like clinical weakness at all. When I was going through the super stress stage waiting for a neuro to see me, I had days where I thought my arms weren't working right and felt so heavy. It was 100% pure anxiety which disappeared when I got the all clear. Hang in there.

Hi Paula - I am going to echo Ed, Simon, & TJ - what you describe is classic "bfs normal". *side note* Ed, in regards to your response to Krackersones - I freeeaking luv you!!~*~Amy~*~

Hi Paula, I cant add anything to what the others have said, sage advise from people who have gone through everthing you are. Remember on the whole symptoms tend to lessen as the months/years pass, (or at least you learn to ignor/live with them) and there are a cornucopia of meds to try that can help if you find you cannot live with them, Clonazepam has helped me and a lot of other people with BFS. Believe me honey that is all it is a crappy syndrome that wont kill you and aint serious enough to warrant any serious research of financial backing from any health care organisation. It sucks I know, it has made a usually phlegmatic individual such an I, cry on more than one occasion, but now Im resolute to just get on and enjoy the good times. I hope you will eventually learn to do the same. Using this fabulous forum will help you achieve that end.May God bless you and ease your symptoms.Andrew.x

1) Go to the neuro - you have the same symptoms most of us have, and they can be annyoing but are benign.2) Believe what he/she says. Please. Anything else is just unnecessary.3) MANY MANY people here have paresthesia. Me included. I get the tingling/numbness/creepy crawly feeling. And it moves around my body from day to day or month to month or year to year.4) Come here when necessary to reassure yourself. But know that we all are human, and you must decide if our posts are helpful or hurtful to your condition. And welcome!