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Very scared...plz give your thoughts

PostPosted: April 13th, 2003, 4:56 am
by uber
Hi, Im sorry im having to do this, but just looking from support from people like yourselves is something I need right now..lemme tell my story

About 2 month ago, I have a headcold, the headcold goes away but im having pains around my left eye, sometimes pain feels around the eye, on the eye or behind the eye. I get concerned and goto my optician, who after every optical test she can do on me, tells me my eyes are fine and that there is no problem, and suggests possible sinuisitis, due to the after effects of the cold. I go see my doctor who prescribes me anti biotics, i finish the course and the symptoms persist. I continue to get worried and goto my local eye hospital, they also give me the all clear on the eye. 2 weeks have passed now and this problem in my left eye is still RANDOMLY coming and going. Sometimes its days before it comes and when it comes it might only last an hour or 2 but its still there. I then read an article on MS, and see its early symptoms..1 beeing Optic Neuritis, and that was the start of a nightmare 2 month for me. I have a long history of depression problems, im only 23, but for the last 2 years ive had depression, I know ive always been easily worked up by things and overly worry. This is when problem number 2 starts.....Sometimes, when I was typing at my computer or lying in bed on a night time, my left index finger would feel like it had an elastic band around it, it wouldnt go numb, but just this feeling of a band around the base of my finger. When I would wake up in the morning the finger would feel stiff and ache a little until I stood up and kinda shook my hand around a little. Id been about a week without the eye problem, then im sitting at my computer and bang, it flares up again, its not even a bad pain or anything, more like an annoyance, as if you have something in your eye. I go straight back to my optician who I suggest all these other symptoms, and my worry of MS. She tests me for optic neuritis, detached retina, brain tumour etc but still tells me I am not displaying any symptoms of those problems as my vision is perfect, my pupils are reacting perfectly etc.

Now things progress more, my left leg is where the problem starts, mainly in 1 of my toes, I felt like something was trying to push under the nail on 1 of my toes, then it spread on to 2 toes, it felt like something was trying to push the 2 toes together, but when id look at my toes, they were perfectly normal. I then start to feel twitching in my left leg, its not a bad twitch, it felt more like a very mild electric shock going from my back down my leg into my toe. But it is hard to detect it from my back to my knee, and felt more like it was coming from the knee down. When I watch my leg, the actual twitch is only evident in my toes but I can feel it going down my leg. The twitching ranges in severity throughout the day and seems to get better when im out walking, I dont notice it as much, but when I do walk, my left leg feels different to my right, I dunno how to describe it...kinda like its heavier or something. So I go back to my doctor, he gives me reflex tests and sensory tests on my skin and foot which all come back fine, he also gives me blood tests which all come back fine. The twitches in my leg persist, its almost a 24hr problem now and is starting to cause a mild ache in my calf, I always feel the need to stretch my leg or try putting it in a different position to relieve the twitching, its a constant annoyance. I also notice recnelty my right leg is starting to twitch too, I suppose perhaps worsened by my anxiety and it isnt as consistant like in my left leg but I suppose in a few weeks time it could be as bad as my left leg, which makes me think this problem is starting to spread. Other problems have been, on SOME days, Im slightly fatigued in the afternoons, its not anything I cant deal with...just that feeling you cant be bothered and want to lay down, it usually goes away after a few hours and its never bad enough to make me feel weak in any way, wether this is related to my twitching problem or my anxiety remains to be seen. My doctor has reffered me to a neurologist and has told me after his tests and opticians tests and due to the fact im displaying no sensory symptoms, i.e numbness, pins and needles etc, that I dont have MS. He is more concerned that this all started from a head cold and then the after effects all seemed to start in my left eye then went on to effect my left arm, left leg. He feels my anxiety is contributing to it massively, but I cannot shake it, I know im not making this up and no matter how hard I try and relax the twitch in my left leg persists, although it is worth pointing out that this is not causing any great problems, my balance on my left leg is a little off too right now, i find myself slouching on my right leg when im standing still, so my posture is all off. Ive read up about MS and these twitching problems are not really an initial symptom, and as im not getting any other symptoms of MS, im starting to feel more relieved that I can rule that out. However the cruel world of internet self diagnoses has introduced me to ALS, once again im not totally convinced I have any realy symptoms of ALS right now, my motor abilities in my left leg and arm are fine, this twitching though could be an initial sign. All this time I still feel like I still have this head cold a bit....Im not all congested as I was when I had the cold, but my sinuses still feel congested, my nose is always blocked.

What do these problems sound like to you guys??? im in a total mess, if I hadn't read that *beep* article on MS, none of this would of happened, this would merely of been some problem in my leg, that I wouldn't of bothered with. I dont see this neurologist for 8 weeks or so, but ive already had to put up with this for 8 weeks, and its making my life a wreck.....please help!


PostPosted: April 13th, 2003, 9:01 am
by Jenn311

Bless your are having such a bad time with things, aren't you?
If you want to know what I think...and keep in mind, I am no doctor....
I think you need to see an Ear-Nose-Throat doctor. I think what you have going on with your eyes is a sinus infection in your ethmoid sinuses, which are right under your eyes. So you have puffy eyes when you wake up in the morning? That is a classic sign. So is your nose being continually stuffy. Get him to do a CT scan if you can...that will pinpont any abnormalities in the whole region. I have chronic sinus the point now that I have been on anti-biotics since December...My ENT did a CT scan and determined that I have no openings in my Maxillary or Frontal sinuses...the result of constant infections. He said that to wipe out a sinus infection for sure, one needs to be on at least 3 weeks of antibiotics...I don't know how long I have had a low-grade infection, but it had been years since I could get through the day without feeling totally pooped! I thought it was just being a single mom, but now that I am infection free, I have a new lease on life! But I have had to deal with eye pain, too...and it can be pretty bad...

I think the pain, twitching, and tightness you have been feeling in your extremities are stress related, due to your worries about your health. It is so stressful not knowing what is going on with your body, isn't it? You are way to young to have ALS...and by the time you had twitching from that you would be already incapacitated by weakness or other signs. MS could be possible I guess...but keep in mind that is rare as well. I have a good friend with MS and as long as she stays out of the heat she is fine!

I think if you read through the old posts here you will discover that almost all of us had some kind of emotional or physical stress that lead to our twitching and other strange neuro symptoms...My theory is that it is stress related. Mine personally started 4.5 years ago, and I am only comes back when I get really stressed. If I relax they go completely away! (well...almost, save an occassional twitch here or there...) I think some people are just twitchers. I's more complex than that...but no one knows the true cause yet, but know that it is harmless.

Best of luck to you...we are here if you need us!
Peace, Jen

PostPosted: April 13th, 2003, 9:54 am
by uber
not too sure what to think jen =\

Even when i am relaxed, the problem doesnt go away, I certantly dont notice it as much, but it doesnt go away.

In response to what else you said, I dont get puffy eyes in the morning, but at times through the day, especially when im in bed on a night, 1 of my nostrills is always blocked. But at other times they are not, like as im writing this now, none of my nostrills are blocked and my head feels clear. Im not sure if this is all a sinus problem and the rest is related from stress =\ I heard BFS can start from a virus such as a cold, so I suppose the possibility is there. Im also not 100% sure its MS, as muscle twitching isnt an initial symptom of MS, and im also not displaying any other MS like symptoms, at least not in the last 2 month since these problems started. I use a sunbed a lot, and dont seem to have any problems with heat.

Something I didnt mention before is that my right eyelid seems to twitch at times too, not sure what that could be. Another problem I seem to have which I dunno is related, is that sometimes when im outside, when it is bright, I can see what look like 1 or 2 "black squiggly things" moving on my left eye, the eye i started having the problem with, hard to describe what they look like, but they seem to move around as I move my eye, and I can only see them when im outside, what could that be?? I was also under the impression that ALS can be caught at any age?? Its just I know muscle twitching CAN be a initial symptom of ALS, but not without any other symptoms like motor problems in my hands, feet etc, which im not having.

But you I think you are right on the money saying that whatever it is, my anxiety is only making it worse, which is kind of silly for somebody of my age =\

PostPosted: April 13th, 2003, 10:42 am
by Jenn311
Hey Uber...

I know what you are talking about with the floaty things in your eyes...I get those...I think everyone does! My Optician (who is also my good friend) told me that as we age, pieces of tissue break off and can be seen as floaters inside our eyes. THey are harmless, and increase with age.
And even though you lie down in bed at night, you may feel that you are relaxed, but with so many worries, you are still under a lot of body can't relax until your worries go away. I hate to push medications on anyone, but you are under such stress right now, you might want to ask your doctor about some anti-depressants or some anti-anxiety meds. Many of us in this forum have taken them (read the archives)...and I used them for two years. They helped me a lot. ANd if you suffer from depression, you may certainly have anxiety as well...the two go hand in hand.
But if you don't want to see an ENT, I encourage you to at least research that possibility on the'll see that eye pain is a real common symptom of a chronic low level infection of the sinuses...Or maybe it is allergies.
As fort ALS starting at any age...The satatistics of getting that disease before the age of 40 are very very small....when you consider that it affects 1 in 50,000 people as it might make you feel a little better.
But like I said...I am not a doctor, just someone trying to share my own experiences. Best of luck,Jen

PostPosted: April 14th, 2003, 4:48 am
by uber
thx for the positive response Jenn, still twitching in my left & right legs, still worried this could be ALS, would I display any other symptoms for ALS??? what would they be?

PostPosted: April 14th, 2003, 8:19 am
by Carolmarie
Hi. I've read all your posts. Your "nose trouble" sounds like it could be chronic sinus infection and I agree with the post that said you should have a cat scan and see an ENT doctor. I have a coworker who has a polyp in her nose and it sounds like her problems. A simple procedure can remove it. And don't give up on doctors. Listen to this... I had eye irritation and redness which turned into excruciating pain which started last May. I saw 3 MD's, 3 neurologists, 2 opticians and 2 opthalmologists. I was convinced I was going to go blind. The pain was so bad that I was taking Advil every 3-4 hours for months until I started getting bad nosebleeds. Finally, in December after suffering for 8 months, the second opthalmologist I saw was at the Eye Clinic at WVU and he diagnosed me with occular rosacea. I took doxycycline for 8 weeks and my eyes have been fine since. Thank heaven I have good insurance. As for the twitching, I started on 9/12/02 and had to worry and endure that along with the eye problems. Like you, I tried to corelate the eye problems with the twitching and was convinced I had MS. When we all get the ALS "scares" MS looks pretty darned good because at least it's treatable. I, too, would like to meet in person other BFSers. I'm in on the Maryland border and could meet with anyone in Maryland, PA, WV or VA. Contact me if interested.

PostPosted: April 14th, 2003, 10:07 am
by Jenn311

If you had ALS you would be experienceing clinical weakness in some part of your you wouldn't be able to wiggle your fingers properly, or pick up a cup...or you might not be able to swallow your food properly, and be constantly getting choked, you would be slurring your words, or you might not be able to get your feet out of the car. Your muscles would litterally be wasting away. And the twitching with ALS is much different than with BFS... In BFS, you have a twitch here, then there, then somewhere else, literally all over your body! Or it may stay in one spot for a good while, but with no weakness. With ALS, the twitching usually begins in one spot, after the weakness has already began to set in... and stays there until that muscle is unusable. You may want to read Aaron's Post: BFS in a Nutshell.
My own doctor told me when I started twitching 4 +years ago (and I am still here, in perfect health!..well, almost..), that twitching is a result of tension in your muscles... Sometimes we don't realize we are being so tense, but worries about one's health can certainly do that to anyone. My twitching is worse in the morning, as I tense a lot at night. I think it is a little more complex than that...but many people find that once their anxieties calm down, so does their twitching. Leg twitching is so common, I think that may be the most affected place if you read through the surveys in this site....Maybe you could try concious helps me!
Best of luck...Peace, Jen

PostPosted: April 14th, 2003, 1:17 pm
by tlotoxl
Great post, Jen.

PostPosted: April 17th, 2003, 5:57 am
by uber
hmmm after been watching this the last few days, keeping my eye on it, im continually worried, the spasms down my left and right left have remained the same, and are noticeable in my toes. I have lost weight too...half a stone =\ Very very worried now =\

Hey Uber....

PostPosted: April 17th, 2003, 8:45 am
by Jenn311
You need to call your neurologists office and tell them that you are freaking out so much that you are loosing weight, and beg to get in earlier to see him or her. If you are under so much stress that you are loosing weight I'm sure that is making your twitching a lot worse.
But take comfort in the fact that you are twitching all over and not just in one spot. THat is a VERY GOOD SIGN!

Try and are going to be fine! ~Jen

PostPosted: April 17th, 2003, 4:19 pm
by uber
right now, im getting twitches and aches in my left leg from the calf down and in my right leg its only evident in the toes. I also sometimes feel a strange pressure on my right foot, as if somebody is pushing down on it.

Im also occasional shakes/tremors in my left hand which come and go and as far as I can tell they sometimes seem to be strain related...I noticed it the other day when I was holding a magazine, my left hand started to shake and I couldnt keep it still. I dont feel any weakness in any of these places im having problems, but they do occasionaly feel tired, and ache.

Also the other day I noticed if I open my mouth and stick my tongue out I cant keep it just kind of moves about a little by itself...impossible for me to keep it still. Are these all signs of MS or ALS??

Not sure what to think and its still many weeks before my appointment with my least 7 weeks.

PostPosted: April 17th, 2003, 5:39 pm
by Craig

I've gone through and am still going through much of what you are experiencing. I get the shakiness/tremors all of the time and I also can relate to the "feeling of pressure" on your feet. My tongue never stays still when I try to keep it still and it will twitch at least a couple of times per day. I've asked a couple of neurologists about it and none of them were at all concerned with the tongue symptoms. Also, right when my symptoms began I lost 20+/- pounds from the stress/worrying I had put on myself. I have since gained it back with no problem at all.

Hang in there and know that there are others who are going through similar situations as yourself. It is definitely a good idea to get in to see a neuro, as he or she will be able to give you the reassurance you need.

PostPosted: April 17th, 2003, 5:43 pm
by uber
Craig do you think I should be considering MS or ALS?? are they even possibilities with my symptoms??

PostPosted: April 17th, 2003, 6:48 pm
by Craig

I want to be careful how I answer your question. Everyone on this website has most likely considered to some degree both ALS & MS; otherwise, they most likely wouldn't be here in the first place. This being said, I highly doubt you have either of the above and I personally don't think you should devote any time to worrying about either one of them. I know how easy it is to think the worst, as I have been there many times myself. Try to relax and hang in there...the last thing you need is more unnecessary worrying.

PostPosted: April 18th, 2003, 12:11 am
by tlotoxl
uber -

i have similar problems with the tremors/shakeness. sometimes when i'm typing and i have my fingers just raised above the keyboard, my index fingers (normally my left hand, but often both) will start wiggling back and forth or just vibrating in general. there is definitely a stress correlation, but i'm not sure that stress is the only reason for it. it doesn't occur at rest and i've mentioned it to two neurologists, though in both instances it was not a problem when i was in the doctors' offices. anyway, the first suggested i might have essential tremor and the second neurologist suggested that since there was no family history of essential tremor, he wasn't sure what it was -- but given my negative EMG and the physical exam he gave me, he didn't suspect anything serious (certainly not ALS).

not that that makes it much easier to ignore when my fingers are shakey, but i guess it's all i've/we've got for now.