Do you tingle?

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Do you tingle?

Postby Jeff on October 9th, 2002, 11:06 am

It's been a little over two weeks now that my left foot has been tingling, that pins & needles feeling. Kind of driving me nuts. Ironically my twitching is pretty low right now but I'm having a hard time enjoying it! Due to this tingling (second time I've had it, same location) I'm kind of worrying about MS. My question to you is this: do you tingle? if so how long does it usually last? Anybody know more about the tingling associated with MS that may dissociate it from benign tingling? Thanx.
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Postby Arron on October 9th, 2002, 12:43 pm

That's a hard one Jeff. Many people do say they tingle with BFS. Personally, I don't tingle. MS is really hard to diagnose and not to put your life on hold or anything, but MS can take years sometimes to show positive signs, even with MRI's and CT scans.

Did you see the Larry King show last night with Terry Garr? She has been having strange symptoms for 19 years now and it turns-out that she indeed has MS. MS is not that big of a deal most of the time (something like 85% are mild cases). Sure, there are worse case scenarios, but that is true with almost anything. I mean, some people go in for a basic surgery and die from the anesthesia. Thousands of people a year die from the common Flu. Lots more than that die in car accidents and so on. MS isn't always that bad. Look at Montel Williams on TV. He was just diagnosed with MS a while back and he appears fine and still does his talk show, runs, exercises and looks mean and lean.

I have had a clean MRI too and I still worry about MS because sometimes it takes several MRI's over a span of several years to start seeing the little white lesions that determine MS. Besides, I'm a worrier anyway. Hell, if it takes 10 to 20 years for symptoms to really show-up and who knows how much longer for symptoms to get worse (if they ever do at all, which is common with MS to not progress too far) then compared to a LOT of other things we "could" get (cancer, etc.) it ain't too bad.

I am not totally convinced that BFS isn't some micro form or off-shoot of MS in the first place. Stress can cause all sorts of things, heart disease, blood pressure problems, stomach problems, etc., so why couldn't it promote "plaque" build-up or imbalances in the brain which could cause BFS symptoms?

There are a LOT of overlapping symptoms between BFS and MS and Fibromyalgia. There are almost no similarities to any Herpes virus / inflamatory symptoms or any thing like that, which have been brought-up a theories before. That theory just doesn't make much sense to me yet, but I still don't rule it out either. It's just not at the top of "my" list.

MS can have symptoms for years, even decades before any lesions can be seen or detected in an MRI, so why couldn't BFS be something similar with a different kind of lesion on a smaller scale so that it causes symptoms but doesn't really show-up in tests? Because it can. This is just one of "my" theories after doing all of the research I have done, but it isn't the only theory I have. A popular theory is that it may be from an autoimmune response that your body was "triggered" into doing by a virus or a reaction from antibiotics or whatever. This too is a viable theory and one that I also think is very possible. Maybe the body's response to antibiotics or an internal infection triggered plaque to build-up or not be broken-down in the brain area and it is collecting in tiny little areas of the brain (much like MS but on a smaller scale, hence the similar yet less severe symptoms between BFS and MS), so who knows as of yet?

Now, please don't go freaking out over MS because you have tingling, OK? Think about this; a LOT of people have BFS and have had it for years and years with NO progression other than their usual symptoms, which very commonly include "tingling" on and off, so what you are feeling is TOTALLY consistent with BFS and in no way, means you have MS, OK? :-)
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Postby Jake_the_twitch on October 9th, 2002, 3:53 pm

The true symptom for most neurological disorders is WEAKNESS. If you read the transcript of the Terri Garr Interview, she developed drop foot the tingling was a secondary sympton that could really be an anxiety response who knows. All the MS sufferers I know had bouts of severe weakness or fatigue, where they suddenly didn't have the strength to walk or stand. During my last visit my Neuro said he would be glad to see me anytime but that unless I develop some degree of weakness that he didn't need to see me again.
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Postby Arron on October 9th, 2002, 4:44 pm

Jake, keep in mind, Terry's drop foot came and went long ago and she didn't think anything about it at the time, nor did she think aanything about stumbling on occasion. Heck, everybody trips over their own two feet every now and then so I can see why she just blew that off as nothing. That's the hard thing about MS is the symptoms are here one day and gone the next and everyone is different with MS. My uncle had MS, (the bad kind), and he died. Not really from the MS but from other things he was doing at the time, but he was pretty bad-off with MS when I saw him last. That was about 25 years ago though. Anyway, I agree about the weakness part you mentioned BUT Terry also said "tiredness" too and a LOT of people with overlapping symptoms get tired and/or fatigued and some cases are MS and many other's aren't. My uncle was never weak until it really hit him hard and by that time, it didn't take a brain surgeon to figure out that something was seriously wrong. I feel like I am draggin'ass all day and just can't get up to speed. It's more like a "drained" feeling and a LOT of people with BFS, CFS, Fibro and even MS talk about that same feeling. It isn't weakness it's just tiredness or mild fatigue. It kind of feels like a cross between being up too late (which I do all the time anyway) and haveing a few too many the night before (which I don't do very often). It's not realy painful, just BLAH. I'm not disputing what you said or read, I am just supporting the fact that all of this stuff is hard to diagnose except the common factor that rules-out the really nasty one's... like you said... weakness.
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Good dialogue

Postby Jeff on October 9th, 2002, 5:28 pm

While I appreciate the dialogue, I'm not trying to be rude here but just so it doesn't get lost myoriginal question regarding tingling hasn't been answered by anyone.

Also, where is the Garr interview? Can you paste it in to a message or link to it please if possible as all my local paper had was about 1 paragraph saying she has MS.

Thanx!
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Postby Debbs on October 9th, 2002, 11:44 pm

Jeff hi ya,

Think we all have some tingling from time to time, can be soo many reasons for it, go get it checked out if your concerned, can be a multitude of reasons for tingling try not to jump to conclusions.

Good luck
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Postby Arron on October 10th, 2002, 12:00 am

Jeff, the second sentense in my first reply says, "Many people do say they tingle with BFS". So I thought that answered your question, plus I wanted to give other info on "tingling" being related to MS. What I didn't want to do is scare you into thinking you might have MS. It could very well be BFS. I see posts all the time on these boards with people talking about tingling or what is called "periphreals" or "periphrial neuropathy". If you are afraid you have ALS, do NOT, because ALS has NO neuropathy symptoms. Hope that helped. Sorry I get so long winded saometimes. I just want to be thourough. :-)
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Question for Aaron???

Postby Nole on October 10th, 2002, 9:58 am

Aaron- You've helped me alot the past few months, but hearing you talk about MS (and also hearing about Terri Garr) is making me abit nervous. I am 26 years old and have had twitching since June 2002 a few weeks after an illness and some stressful situations. I am feeling much better now, barely notice the twitches anymore (unless I eat something that intensifies them). I have no weakness, some muscle soreness from my sports, and fatigue from time to time. But otherwise I feel good, sometimes I get those strange sensations that go along with BFS . I have been sleeping good lately, sometimes I notice I may shake alittle when falling asleep, but that happens rarely and when I am really tired. I have seen two GP who both checked my reflexes, over all health, had blood work done twice and they both said it was benign twitching and to try yoga, and relaxing techniques, and they should go away with time. My question to you is I have never seen a neuro because both doctors feel I am not a good canidate to see one, and honestly I dont think I need to see one either, my symptoms are improving. But with all of this MS talk lately (and it seems like everyone on here has seen a neuro) I wonder if I should? I dont think I have any classic symptoms of MS, but when I read stuff on it or hear about things I get nervous. I know your not a doctor but I respect and accept all the research you have done on BFS. Do I seem to have the classic syptoms of BFS?? Any response would be greatly appreciated. Thanks,
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Postby Arron on October 10th, 2002, 10:10 am

Oh Nole, sorry man, I didn't want anyone to get freaked-out about MS. You sound like you have classic BFS symptoms and just so you know, I haven't been to a neuro either! I talk to a lot of doctor buddies of mine (none neuro's but top doc's in their fields) and they have all said that if there is no weakness and the other "usual" signs of something bad, to not bother going. MS is strange and from what I have been learning about it, I honestly believe that it is the most misdiagnosed thing in the world. If you look at any MS discussion group (please don't really go there, you'll just scare yourself just as any ALS group would too), you would find that half the world has these same symptoms. All MS is, is plaque build-up in the brain. It can pop=up anywhere at any time and it is constantly changing. Most cases of MS (about 85%) and very mild and not really bothersome. Kind of like BFS I guess. No Nole, you do not sound like you have MS though. I have quite a few MS symptoms from time to time and it always keeps me wondering. Time will only tell. I've had one clean brain MRI so far. Please don't worry about MS, OK? I was only referring to "some" people with MS also tingle but usually it is total numbness with MS and that's why people fall over, trip, etc. BFS people don't really have those problems except the tingling. Relax, OK? Sorry I alarmed you.
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Postby Nole on October 10th, 2002, 11:13 am

Thanks Aaaron,

Once again you have put my mind at ease. I didn't really think I had it either, but when you see these things your mind will start to wander. I just needed a reality check. I also feel better that I am not the only one who has not seen a neuro nor do I think I need to at this point, I am improving in leapes and bounds with the occasional bad day here and there, but nothing like what I had in the beginning. Alot is mind over matter and just living your life. Sometimes I find looking on the web is a bad thing for me and although this site has helped tremendously sometimes it makes me nervous again. Once again thanks for all of your help.
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Postby tlotoxl on October 10th, 2002, 11:49 am

Although I've seen a neuro, Nole, I'm one of the minority (?) on here who hasn't had an EMG and I have no immediate plans to have one either. When I saw the neuro he only really looked at me for a bit and tested my grip strength. After that he said there wasn't much point in doing an EMG unless I really wanted to, and I was pretty much happy to let it go there. Still, I wasn't really feeling calmed down until I stumbled across the forums here (well, the previous forums) and read what Arron and some others were saying. I get tingling myself, though mostly it's just the twitches. I also find that my limbs seem more susceptible to falling asleep than they used to be, but it's not that bad and might also have to do with my work requiring me to sit in front of the computer for very long periods of time.
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Postby Nole on October 10th, 2002, 2:49 pm

Good im glad i am not the only one who hasn't had an emg. I am a perfectly healthy woman I know that but sometimes you let the symptoms get the better of you. My only true consistant symptom is the twitches and that is not as frequent any more. I have always had hands that would fall asleep and go numb when I was sleeping, that does not worry me though because I know it is the way I sleep on tham that cuts off the circulation. My other symptoms fatigue and such are a part of everyones life so Im not sure I can even call it a symptom of BFS. I guess we all should celebrate that we do have our muscle stregnth and are able to do the things we love. I am off for a massage now, I thought I would treat myself, why the hell not you only live once, do what you love!!
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Postby Jen on October 10th, 2002, 7:33 pm

I do get the tingling. In the past I've had it last for months. Most of the time I don't notice it except when I'm trying to fall asleep or am sitting real still. It's feels almost normal to tingle now. Nole and Tlotoxl, I actually have had an EMG and MRI. I had 2 appts with a neuro. He did a complete exam and ordered LOTS of bloodwork (all normal). It was stressful at the time waiting for each appointment and for the results (emg results were immediate), but I can't begin to express how confident I now am with this being only BFS. I can zip around these forums and not get freaked out anymore. I think MS will always be in the back of our minds for many of us, but I feel good about being able to put it in the waaaaay back for me.
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Postby Arron on October 10th, 2002, 10:02 pm

Oh Nole, I'm sorry, I didn't know you were a gal. I have posted things like "oh man" "dude" in many of my posts. Sorry :oops:

As for the hands falling asleep while lying in bed, mine have been doing that for decades and it is totally normal. ANYTIME you rest your head (which is actually quite heavy) on your arm or you lay on your arm, cross your legs or anything like that, you will certainly cut-off, or at least slow-down the circulation to that limb, which in turn will certainly make it go numb in due time. I also get the fatigue and just "drained" feeling that makes you drag-ass all day. That symptom comes-up under BFS, CFS, Fibro and many other's, so who knows? Anyway, I have had no EMG, no neuro visit or anything like that, just regular doctor visits and good talks with my doctor buddies that help me learn about this stuff. I figure if my doctor buddy's aren't worried and my GP's aren't worried, then I shouldn't be worried either.

Hope all of you are feeling better. Don't let this stuff get the best of you. Like Nole said, go out and get a massage, enjoy your life, indulge and have fun... you deserve it! :-)
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Postby Debbs on October 10th, 2002, 11:35 pm

I worry about MS heaps, anyone know if there is pain in MS? I have stron pain in my legs and at times they fall out from under me, and feel strange they twitch but not a lot anymore just randomly...any thoughts ?

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