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Epilepsy Community
1.81k Members
1413972 tn?1305583364

i feel like i belong no where.. :-(

ive recently joined this site, and thought id post a few of my signs/symptoms and see if anyone can also relate, maybe giv me some kind words, im feelin quite lost n very much alone. ive not been diagnosed with anythin yet and sick of bein told im normal but how can i be wehn ive been expericenin thes for 6yrs nrealy, since the brith of my first child back in feb 05.. docs/neuros say cus im semi conscous no way can it be epilepsy but ive been readin all sorts that states otherwise.

tinglin - starts in my bum n little finger
rollin eyes
seizures - semi conscious - if i have seizure
shakin
stiffness
cant breath
foamin at the mouth
hot to cold
jerkin
headaches
eye aches
neck aches
shootin pains - in chest n back  and in legs
cant walk (if i do i drag me feet/legs)
dizzy
sicky
blurry
numbess
slurry words
back trouble
light headed
VERY senitive eyes (wear glasses now but dont do nout)
hair fallin out
achy joints - knees, wraist, ankles
swallon face normally right side.
spacey
drunken feelin
lost me voice (3times now)
balance affected
memory useless now
very forgetfull
no concerntration
not hungry
dont sleep - lucky if i get 4hrs

ive recently had another MRI - docs say its normal, but says that the cerebellar tonsil was slightly low lying so ive joined the chiari malformation, MS groups too.

ive had a head / eye /neck ache since last sunday now, docs prescribed co-codamol even though i said it dont do anythin. the pains easied off a little but im left with a weird sensation, to feelin me heads bein squashed - its more into the curve of my head that actually at the top of my head. the only way i can describe it is like ive slept funny - which i know i havent!

emz
3 Responses
1398693 tn?1343688338
Hello,
        I just wanted to let you know that you’re not alone. I may not have the same problems you’re having but I know the frustration when dealing with an illness.
If your doctors can't pinpoint it after however long I would see another doctor there has to be someone out there who is either willing to do the research or actually knows what's going on. Not knowing is the worst thing.
Avatar universal
Hi there
I just came on this site to post a question, I'm no medic or expert but The stuff that's happenening to you is real.As kj says, there must be somewhere else you can go to get some answers. You have a young child and they're patting you on the head and sending you home!
You must see a specialist for your own peace of mind. If you have any money,ask for a private appointment with a different doctor, if not drive your doctor crazy until he sends you to a new person. Keep persevering, you'll feel so much better when you know what it is, and that someone's taking you seriously.
I have ME(CFS in US) so I know all about disbelieving doctors.
One little word though, do your research on the net, but don't frighten the life out of yourself with self diagnosis.
It's like when you look through a medical book you could have everything!
If you find what you're looking for re. your own personal symptoms that's great. Print it out and take it to your doc. They absolutely hate that because they like to play the game of I'm a doctor so I'm clever and you're the patient so you're stupid.
Assert yourself!
Good luck, take care.
1340519 tn?1305170302
You mentioned that you joined the Chiari forum... I have to say a lot of your symptoms seem to match up with that - I am in the process of trying to get diagnosed as well. I sent my MRI to The Chiari Institute in NY - the docs will review my images and the questionares I filled out and let me know if I am a candidate to go and get tested there... maybe you could do the same?!

Good Luck
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1780921 tn?1499305393
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