hello, i used to post here but i went to spain on vacation for a while and just recently came back. I will explain my situation so u understand better:

1. Last summer i became sick from stomach and never got 100% better.

2. Feeling of unbalanced, uncomfortable walk as if though my feet are sinking for 5 months now.

3. Unsteadiness when sitting or lying down, like if im going to fall to the sides. Unsteadiness when doing a constant movement, like side to side, or when i come out of a moving thing, like a car...etc...

4. Eyes are horrible, i am so sensitive to bright light, always see afterimages, jumpy eyes.

5. Sometimes i get vibrations through my body at night when i havent been active during a day.

Basically thats it, neuro said it was either a hormonal change or it is due to my TMJ, even though my dentist told me my TMJ has improved a lot. Went to ENT, everything perfect. NEED HELP ON THIS PLEASE, i am only 17 and dont even feel like going anywhere anymore with this uncomfortableness with my body, please help asap, and hope its not MS.... THANK YOUUUU VERY MUCH!!! sorry if it sounded so serious, KISSES

Hi

sorry to hear you are going through all this, i remember your posts from the last time. I dont really know what you have but what i can say is that i get your no 2 symptom. Feelings of feet sinking when walking, and slightly unbalanced even though neurological examinations and brain mri were clear. I am currently waiting to see a neurologist to find out whats causing this. I do not think you have MS since it usually starts with weakness of muscles and it also affects your eyes making you go blind for a few days, and also your bladder, making you incontinent, but im no doctor, just read up on it a lot. You should maybe post on the MS board for advice. If you havent yet had an mri i think you should. If the neurologist doesnt come up with anything for me i am going to ask for an mri of my back since i thinkthat has something to do with the feelings i have. Good luck to you. keep us posted.
Lyndsay xx

thank you for replying lindsay!!!!! I know that the feeling of feet sinking is horrible, do you get it every time you walk? I do, but if i wear someting like flip flops where i can get half my foot out of the shoe, I KNOW IT SOUNDS WEIRD, i dont get the feeling so much...its mostly when im barefoot or with closed shoes, and if i try to ignore it, i feel like im going to fall straight down... i am hoping that its from my braces, and i dont want to get an mri yet because they really scare me and id rather not know that i have MS yet because at least now i have the hope that i might not have it, and if i do, i know i will become soooooo depresssed because i used to be such an activ person..if u come across any info please get back to me on it, THANK YOU!!!!! GOOD LUCK WITH THE MRI!!!!

[QUOTE]Originally posted by SweetSori:
Re: ..."Feeling of unbalanced, uncomfortable walk as if though my feet are sinking for 5 months now...
Unsteadiness when sitting or lying down, like if im going to fall to the sides. Unsteadiness when doing a constant movement, like side to side, or when i come out of a moving thing, like a car...etc"...

Vertigo?

..."Eyes are horrible, i am so sensitive to bright light, always see afterimages, jumpy eyes."...

Photophobia...An Opthalmologist visit could help. There is a link between vision and balance...

..."Sometimes i get vibrations through my body at night when i havent been active during a day."...
Poor circulation?

Sweetsori,

I know that the feeling is so annoying!!! i really can relate to you on that one. I dont get it every time when i walk but i maybe get it for a day or two then it goes away then comes back etc, i have it today actually, just picked my daughter from school and when walking back it felt as though i was walking on a bouncy castle!!! total nightmare! I too find that it worse with bare feet and closed shoes. I find it most annoying when i have trainers on. wonder why that is? I have posted on a few boards asking what this could be but with very little help. One or two people did suggest neuropathy, but im not sure thats what i have. I got medication since they thought it was vertigo like Gemi suggested but none of the medications worked so it definetly isnt that, vertigo is more of a room spinning sensation anyway, rather than feeling funny when walking. Please dont be scared to get an MRI, it will give you peace of mind. Until you do you will always be wondering and worrying. It might be that it can be easily fixed, or it might be something slightly more complicated but at least then you will know to deal with it and its helps you cope with the symptoms more. Im no doctor but im quite sure it wont be MS. Please try and go to the Ms boards then you will see what i mean. Good luck to you.
Lyndsay

Sweetsori,

I know that the feeling is so annoying!!! i really can relate to you on that one. I dont get it every time when i walk but i maybe get it for a day or two then it goes away then comes back etc, i have it today actually, just picked my daughter from school and when walking back it felt as though i was walking on a bouncy castle!!! total nightmare! I too find that it worse with bare feet and closed shoes. I find it most annoying when i have trainers on. wonder why that is? I have posted on a few boards asking what this could be but with very little help. One or two people did suggest neuropathy, but im not sure thats what i have. I got medication since they thought it was vertigo like Gemi suggested but none of the medications worked so it definetly isnt that, vertigo is more of a room spinning sensation anyway, rather than feeling funny when walking. Please dont be scared to get an MRI, it will give you peace of mind. Until you do you will always be wondering and worrying. It might be that it can be easily fixed, or it might be something slightly more complicated but at least then you will know to deal with it and its helps you cope with the symptoms more. Im no doctor but im quite sure it wont be MS. Please try and go to the Ms boards then you will see what i mean. Good luck to you.
Lyndsay

oops sorry for the double post!!! meant to say aswell that i doubt its vertigo like Gemi said since you have already saw an ENT and they wouldve diagnosed that.

hello thanx again for your replies, yes i did consider vertigo but the neurologist ruled it out a while ago, even though when i started with this i did have two room spinning episodes and the doctor took out a wax block i had in my ear and told me that was the cause of all of it..i was thinking that maybe when i get my braces off this will all go away coz some people have told me it probably has to do with my mouth... but its too much!!! and i have noticed that right about the time when i get my menstruation my unbalanced feeling seems to get worse...could it be then related to hormones?? is eye sight related at all with it?? god im having such a tough time, good thing the boards are here. I sitll havent come across any diseases that have as a symptom the "bounce walking" thing except TMJ...i have no idea, THANX AGAIN!!!!!!!!!!!!!!!!!

there is a condition called arnold chiari malformation. your symptoms sound just like it. go to brain and nervous system board and read my post. there's a great web site someone gave me........

[B]This is absoutely horrible, my symptoms havent improved, but i have noticed a pattern in ocurrences, every two weeks before my menstruation, i get the feeling of unbalance and sometimes i just dont even wanna walk from the unbalanced feeling im feeling, its so uncomfortable, and also my neck has been feeling like as if it was really swollen when its not, or as if my head is too heavy for my neck......im thinking maybe hormone balance problems or maybe even something in the neck.....any help????THANK U!!!!!!!!!!!!!!!!!!

[B]This is absoutely horrible, my symptoms havent improved, but i have noticed a pattern in ocurrences, every two weeks before my menstruation, i get the feeling of unbalance and sometimes i just dont even wanna walk from the unbalanced feeling im feeling, its so uncomfortable, and also my neck has been feeling like as if it was really swollen when its not, or as if my head is too heavy for my neck......im thinking maybe hormone balance problems or maybe even something in the neck.....any help????THANK U!!!!!!!!!!!!!!!!!!
[SIZE=6]

Hi sweetsori.

sorry to hear you arent any better. what you have said in that post describes me exactly too, i see we share a lot of symptoms. I was at my doctor today,and since all my tests have been normal the only thing he came up with was that i had some sort of viral thing that interfered with the central nervous system. To me that is just an excuse because they just dont know. I want a scan of my neck to be sure, cos like you i get the "head too heavy" for neck feeling. Try and get a head and neck mri i think only then you might get some answers and it would rule a lot out. The balance thing is awful. Its my worst symptom, i asked the doc what caused this and he blamed it on this mysterious virus!!!! seems a bit strange to me. Have you been back at your doctor? if so what did he say? if not, get back to him. Take care. xx

hey lyn!
i was recently at the neurologist and he told me that i should wait till i stop growing to rule out hormonal imbalances, and then i will get an mri, other people have told me to check my neck because there might be some pinched nerves or something, i dont know what to do anymore, because i just finisehd my period a week ago and im still feeling unsteady, even when im sitting, today i was just writing in class and i felt like i was gonna fall back, it was horrible, i had to get out and wash my face coz i thought i was gonna die! and one question, when you do a constant movement, like moving to one side or something, rocking back and forth, do you feel sooooo unsteady??? coz i do and its drivin me nuts, tell me any new info u find or diagnosis, doctors suck, GOOD LUCK AND KNOW IM HERE FOR YOU!

sweetsori, are you on any meds, pills of ANY sort?

maxie

hello, i used to post here but i went to spain on vacation for a while and just recently came back. I will explain my situation so u understand better:

1. Last summer i became sick from stomach and never got 100% better.

2. Feeling of unbalanced, uncomfortable walk as if though my feet are sinking for 5 months now.

3. Unsteadiness when sitting or lying down, like if im going to fall to the sides. Unsteadiness when doing a constant movement, like side to side, or when i come out of a moving thing, like a car...etc...

4. Eyes are horrible, i am so sensitive to bright light, always see afterimages, jumpy eyes.

5. Sometimes i get vibrations through my body at night when i havent been active during a day.

Basically thats it, neuro said it was either a hormonal change or it is due to my TMJ, even though my dentist told me my TMJ has improved a lot. Went to ENT, everything perfect. NEED HELP ON THIS PLEASE, i am only 17 and dont even feel like going anywhere anymore with this uncomfortableness with my body, please help asap, and hope its not MS.... THANK YOUUUU VERY MUCH!!! sorry if it sounded so serious, KISSES

i am on no pills at all, nothing nothing nothing, today im really complaining about my neck because i feel this pressure on it like it has a heavy weight on top! its such a weird feeling that im like not able to turn my head and i am getting so dizzy today, i am truly going nuts, whats wrong with me!!!!!!!

sweetsori, could you check with an alternative doctor of some sort--not a quack but an M.D. who also deals with alternative medicine--it sounds like you may need someone who goes beyond a traditional approach. Just a thought. Of course don't take any weird supplements anyone gives you without thorough investigation--but checking your symptoms out with a good osteopath or something could prove useful.

maxie

hello, i used to post here but i went to spain on vacation for a while and just recently came back. I will explain my situation so u understand better:

1. Last summer i became sick from stomach and never got 100% better.

2. Feeling of unbalanced, uncomfortable walk as if though my feet are sinking for 5 months now.

3. Unsteadiness when sitting or lying down, like if im going to fall to the sides. Unsteadiness when doing a constant movement, like side to side, or when i come out of a moving thing, like a car...etc...

4. Eyes are horrible, i am so sensitive to bright light, always see afterimages, jumpy eyes.

5. Sometimes i get vibrations through my body at night when i havent been active during a day.

Basically thats it, neuro said it was either a hormonal change or it is due to my TMJ, even though my dentist told me my TMJ has improved a lot. Went to ENT, everything perfect. NEED HELP ON THIS PLEASE, i am only 17 and dont even feel like going anywhere anymore with this uncomfortableness with my body, please help asap, and hope its not MS.... THANK YOUUUU VERY MUCH!!! sorry if it sounded so serious, KISSES

ive never thought about taht but i think that maybe i have to just keep checkin with doctors coz im afraid it could be multiple sclerosis because i have a lot of the symptoms........what do u all think??? thank you

I had pretty much all your symptoms except for the first one. I felt very unstable/ poor vision/ and the walking thing too and the vibrating thing, but it seems more concertrated in my ***. I also would have werid feelings in my head. One day in class i had some sort of attack, all of a sudden i felt really dizzy, and i felt like i was having a stroke. I saw a doctor and they ruled it was a panic attack, even though i never had any scans. Well to make a long story short some people belive that anxiety can be a cause of many the symptoms you are describing. After going to threapy jsut a few times many of the symptoms stopped, like the walking thing and the unstable thing has lessened to an exent too. I was also but on "Beta Blockers" which lower your heart rate and i have found that this has helped with some of the unsteadiness. I do get these feelings back every now and then and i am still concerned it is something more than just anxiety. Well GOOD LUCK BUDDDDDDY!!!!

and they never thought it could be multiple sclerosis or anything serious like that?? coz i mean, i try relaxing when im lying down, but then i will feel like im falling straight down or like im moving.....i donno whats up with me, i wish it were just anxiety but i dont think it is....did u ever get any further testing????? thanx for the replY!!!!!

ok maybe im just freaking out but everyday i feel like some new symptom comes up, like lately my back is killin me, my neck feels so much pressure, and i kno i have a lot of muscle contractions on my back due to the tensed muscles that i get when i get dizzy and all that stuff, and it all hurts so bad!!!! help!!!!!

Hi, I don't if this means anything or not. I have been dizzy, lightheaded, and have much brain fog and limp movement at night while I sleep. I had a very bad intestinal stomach virus on my wedding day 4/11/2003 and in July I passed out and hit my nose on my wife's car door while helping her wash it. I passed out basiclly. I was diagnosed with (POTS) Postural Orthostatic Tachycardia Syndrome which is a form of Dysautonomia. I have found that I have a chronic resolving Epstein Bar virus. Basically my immune system went into overdrive and attached the nerves in my autonomic nervous system and did alot of dammage and destruction. Over a third of my blood pools in my legs and arms. Have you noticed fluctions in your blood pressure and heart rate of more than 30 points between laying and standing? Tests can be done (Tilt table test and Hemo dynamic test. This would tell if you had POTS or not. Hope this isn't misdirecting you but worth looking into. You can e-mail me leemac@wowway.com. Hugh

well i dont know about all those things u told me coz im only 17 so i dont understand too well....all i know is that my latest news is that the other day i experienced a near syncope vasovagal episode which is when your heart doesnt pump enough blood to your brain and you nearly pass out so i went to the ER and they did the table tilt test and other things and just diagnosed me with vasovagal syncope i think they wouldve told me if it was POTS...i donno whats happenin to me, but i wish u good luck and that you feel better, and thank you very much for your help and further info is very welcome.

well i dont know about all those things u told me coz im only 17 so i dont understand too well....all i know is that my latest news is that the other day i experienced a near syncope vasovagal episode which is when your heart doesnt pump enough blood to your brain and you nearly pass out so i went to the ER and they did the table tilt test and other things and just diagnosed me with vasovagal syncope i think they wouldve told me if it was POTS...i donno whats happenin to me, but i wish u good luck and that you feel better, and thank you very much for your help and further info is very welcome.


Hi again. Email me at lyndsay1979@aol.com. :angel: better chance to talk.

Sweetsori,
I have the exact same issues except the sesitivity to light. I have had 3ct's and an mri been to 2 ent doc's as well. Have you actually fallen? I am going to see my 3rd neurologist in a couple weeks. I am still looking for answers and I understand how hard it is to explain yourself to doctors. There is a lot of fears that I have especially when no one can tell you what is wrong, understand that you are not alone. PG

actually i have felt like falling a lot of times but i keep myself up, somehow i carry this on everyday, and its like i fight against it without knowing what it really is, its horrible, but doctors seem to not understand, i fainted the other day for no reason, but anyways...good luck with your neuro this week, i hope u get some fast answers!!!!!!!!!!!!! keep in touch!!!1

I dont know if you have read my post but I have been suffering many of your symptoms for 6 years now. Your description of walking is exactly how I feel (waterbed feeling) i constantly feel unbalanced even when sitting down, I have to keep moving and fidgeting about as I feel as though I am going to fall out of my chair. I am sensitive to bright lights - cant drive at night and also loud noises. I am convinced my problems are neck related as certain position set it off ie looking down, coming down stairs - uneven ground. Am constantly fatigued and cant stand for long as I feel I will pass out.

Cant remember if you said you had had an MRI done or not. Also just thought to mention it - do a search on sternocleidomastoid and dizziness. the muscles in the front of your neck can cause dizziness. The physio I went to said she thought that was what was causing my dizziness but even after physio for a few weeks I had no improvement.

I really do sympathize with you as no one understands how awful this is and how it affects every minute of your day.

Hope you can find out what is causing it - take care

Christine

Hi SweetSori.

I remember you posting on the inner ear board a long time ago. I sometimes come on this board to see if people are experiencing inner ear dizziness but dont know it yet.

I have just the same symptoms as you as in waterbed walking and other dizziness symptoms - Ive got uncompensated Labyrinthtis. You must remember that many specialists are useless and if your inner ear testing is normal, they rule inner ear out. This is not correct as inner ear testing is not too reliable. A good ENT will know if it is inner ear just by your symptoms. If youve had spinning at the start its highly suggestive of inner ear.

Another possibility is MAV - migraine associated vertigo - this causes all these dizziness, rocking symptoms and often symptoms come and go and are bad around menstruation. You do not need to have migraines to have this. They can be silent headaches.

Hope this helps a bit xxx

Hi SweetSori.

Hi I agree completely with emysbobs!

Crazy that you have been told that the water bed off balance sensation swhen you walk are not vertigo! that is rubbish. Although vertigo is clasically thought of as the fast spinning type sensation, the very mildest form is often just as you described.

That the ground as you walk on it is shifting a little or not entirely solid, although commom sense tells you that it is!

You also mention jumpy eyes feelings - common with a vetstibular upset as the inner controls through the central balnce centre in the brain something called the occular reflex. When the ear is basically giving even mildly wrong imformation you get all the symptoms that you describe.

Gee even more convincing when you say that in the beginning you had two spinning episodes.

I had a hopeless ENT during my spate of this and he was kind of at a loss also. He was about to refer me to a neurologist also to rule out any brain problems, despite a clear MRI.

But I went to see a neuroTologist which is different to a neurologist as they specialise in balance disorders.

ALL that you describe is what I have had and to some exetent am still epxeriencing.

Have you had proper inner ear testing and by that I dont mean having an ENT look visually into your ear. There are numerous tests that can identify asymetry between your ears - put simply they are giving different messages. These tests are ENG, calorics, hearing tests, rotary chair test, VEN etc etc etc.

I know you say that your ENT says its not your inner ear but you would have to have had the tests to be sure and given your age I think thats why they all keep saying ah just wait it will go.
Good Luck!!

THANK YOU SO MUCH!!!!!! thanks for replying it means a lot to me, actually im really lost now becauser my parents wont take me to anymore doctors since they think im making it all up and im really upset and cry all the time and wish i were just normal like all my friends, my walking imbalance sensation has improved, but i still get unstable feelings when im laying down or when i move my head to much, and the jumpy eyes things is just too annoyhing, ic ant focus on anything wihthout my vision wobblering.And i get this sore neck that feels like my head is really heavy when i put my head down too much when im studying, its horrible!!!!! Anyways, i will try to not think about it, i hope it goes away, and ive been to two ENTs and both have said i have nothing isnce i dont have hearing loss..... and i also had a cat scan to rule iner ear things out.... i dont know!! buttt thanx a lot for all ur help!!!! god bless U!

Its rubbish that you cant have an inner ear prob if you dont have hearing loss...I dont have hearing loss but have inner ear prob! Also a cat scan can not test for inner ear. Find a new specialist sweetsori. Do not make people think you're making it up as you're not. keep smiling xxx

This is exactly how my dizziness feels too. I've had MRI, Cat Scan, Ear Tests, and all came up with nothing.

My chiro is convinced it's my neck compressing the nerves. I admit he did help a little bit when I was seeing him regularly, but now I have no money and the dizziness is back bad. I'm fairly convinced it's all due to anxiety. That's another reason I haven't kept up my chiro. I think perhaps he helped as he relieved my anxiety about it all. Who knows though. My next step perhaps is to see an Osteopath.
The main thing is to try to put it out of your mind (I know that's sooo hard) but the less you freak about it, the less you'll notice it.
I still think maybe I have MS or something, but then that's my anxiety coming through.
good luck, it's incredible how many of us have this drama, but I'm sure there's light at the end of the tunnel and we'll overcome this, even if the doctors are stumped (as usual).

Take Care,

Jordie.xx