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Brain & Nervous System Disorders Message Board


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Tonsillar ectopia
Nov 12, 2008
hi guys,
i really got a long story so i will try to make it as short as possible.around 1997/1998 i got very ill.first symptoms were heavy weighted legs like i couldnt move them and then over xmas period left sided weakness,couldnt swallow and nausea(chronic)and generally just really unwell.was told it was glandular fever but because of weight loss was put in hospital.they found nothing.anyway last ten years i have had the following symptoms and was told i maybe had mutiple sclerosis but then was told i didnt have that either and was told i need to go to physchiatrist.i always have refused to see a phychiatrist mainly because i know myself and know i wouldnt do this for attention or any other reason.so here are the symptoms for last ten years

:my main symptoms are these:
1)fatigue
2)leg weakness
3)not being able to walk longer than 5-10 minutes
4)eye problems in right eye(blurred vision,white dots,stripes and other stuff)
5)off balance
6)tight bands around ankles like im wearing tight socks
7)jerking of legs
8)weakness at my wrists
9)pins and needles
10)falling from my legs giving out from underneath me
11)buzzing and piercing noise in my right ear has been there for 5 years now
12)constipation
13)zapping in my legs and msucle spasms
14)cramping in my toe and my toe stands straight up it hurts like hell.
new symptoms this year and last year are
1)tight prssure around my chest under ribs this has happen twice...once was very painful other time was just like extreme pressure.
2)weakness in my arms after burning sensation left.
3)sitting on a chair getting a zapping in head and almost falling off chair cause of causing loss of balance
4)my right hand trembles.
5)the brightness of the sun seems to affect my eyesite i cant see.
symptoms i have had in past b4 1998
1)tripping on something that wasnt there.
2)walking like i am drunk(this symptom has become more problematic the last few years)
3)went blind at age 20 while i was working and my head was banging really bad...after i could see after about three hours i had for over a week continued blurred vision and dizziness and weakness.
4)walking kids to school in summer always caused me to feel extremely dizzy
5)i was never the same after i had my third child but i always felt so great when i was pregnant.after my daughter i was tired alot and had loads of dizzines but i just put that down to being extremely busy with two little ones but after my third child i was always tired and in bed by 8pm every night.always had lots of headahces and numbness but never occured to me to do anything about it.
since 1998 my life has never been the same.
i have other symptoms but i wont go into them as i said previously i dont want to be classed as a hypochrondriac.
but one thing i do need to mention also is using stairs is a killer.it takes a huge amount of strength to get up or down stairs.

anyway my last mri was done in 2004 was told to see phychiatrist since no evidence of ms.recently i went to see a neuro-opthamologist because in the sun i cant see a dam thing.it is like it blinds me.the neuo told me because i had seen a specific doctor and he knew this doctor and that he was a good doctor and also a friend of his he was not going to help me so i got mad and told him what a load of bull...... and walked out.but after my anger had died down i started thinking maybe i did have a mental disease but then i thought no no way so i relooked at my mris and found that my back is completely stuffed and that the mri meant for multiple sclerosis(which only took ten minutes by the way)had something called tonsillar ectopia on it.it also says it goes in 8mm.so i looked it up and low and behold it came up as maybe chiari.so i went back to my gp and she was so mad.i have been going around for the last ten years thinking that hey maybe i am or do have a phychiatrict problem but it appears i dont.i rang a neurosurgeon...his secretary told me to fax mri report and she would get back to me.so heres the thing she rang me tuesday and told me that my mri report doesnt have much wrong in it but i guess i can make you an appointment so 5th of jan i go.my question is is it better to go to someone who specialises in chiari or just a normal neurosurgeon.i dont feel so keen on this guy i just feel its going to be a waste of time again and honestly for my sanity i dont think i can go thru another doctor telling me its all in my head.
sry this is so long.

cheers susanne





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