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Old 01-13-2009, 05:28 AM   #1
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eevee HB User
not sure which category to put this,various problems for over 15 years !!

sorry if i have posted this in the wrong section,im not used to forums and i have varied problems and no diagnosis


I am sorry this is so long but this is only SOME of it

I have been suffering with various health problems for at least 15 years ( i am now 37 years old) and possibly
going back to when i was born,as yet i have had no proper diagnosis from any doctors
with them not bothering to look at ALL my symptoms together (this is because GP appointments
are only ten minutes long and they will only look at one problem at a time)
i have sent a list of my symptoms to various doctors who have ignored it.
What doesnt go in my favour is that i have mental health problems (borderline personality
disorder) and i am sure they think
i am being a hypochondriac !! this couldnt be further from the truth,i have to be literally
dragged to the doctors and if they think this is caused by stress they are wrong,i get this when
i am very happy.
They may think i am making this up to get attention ,if that was the case i would be
demanding that my husband leave work and i am sure that i would think of
something more dramatic in order to get attention.
Its about time doctors got with the times and realised that just because a patient is a woman they
are not being hysterical and imagining things,people with mental illness can be physically ill.
my GP has practically admitted that i wont get looked at properly unless i go private !

childhood
my mother took me to the doctors because i was not a "bendy" baby
my right knee cap would pop out,various straps were tried
i had a couple of head injuries
teenage
knee still popping out along with hip on right side
had arthroscopy on right knee told it was wear and tear and could also be caused by my spine
*this was not followed up*
a test involving putting dye through my right knee caused me a ridiculous amount of pain,i was
told that was not normal
when i had a general anaesthetic and the drug was put through my right arm i screamed in
pain
adult
around 1998 i started to get vertigo that was so severe it would make me bedbound
for anything up to a week,unable to even lift my head and having no choice but to
wet the bed as i couldnt get to the toilet,if i didnt have a bad attack then i was always
unsteady with my head held over to the right and i would walk off to the right.
around the time of one of my big attacks i had a blood test and the doctor said "infection was present"
but couldnt say where.
positional vertigo tests showed that my vertigo was not caused by my ears.
around the same time i started getting head pains (nothing like normal headaches and didnt make me feel sick so doubtful it was migraine) in the right side of my head and a stabbing
pain in my right eye (an eye test showed i had a blind spot)
i was prescribed carbamazepine ( an epilepsy drug that is meant to help with headpain)but this made no difference
i had a brain scan which was clear
various meds were tried for the vertigo and none worked
i started to get burning pains in my right hand,my hand would also go numb (the last two fingers NOT the first
two which would be associated with carpal tunnel)
legs and feet always ice cold (my grandad had both legs amptutated due to bad circulation/gangrene) but hands always warm.
a chiropractor found a swelling on the right at the top of my neck but wouldnt deal with it as i couldnt afford her charges.
physio therapist noticed weakness on my right side
i had a neck xray as my neck was painful and head still held on the right,one doctor said my neck was curved
another doctor said it wasnt.
physiotherapy was tried but when my neck was manipulated it just set off my vertigo,the physio therapist noticed that i had "pink palms" and said this was a sign of an illness but she couldnt remember what it was,she referred me to a specialist who turned out to only be a pain specialist and he couldnt really help as he didnt know where the pain was coming from !
no more mention was made of the pink palms illness.
i had a scan of my neck that came back normal,if you ask me my whole spine should have been scanned.some days my spine totally seizes up and i am unable to move.
i then started to get numbness and tingling in my right foot,this eventually went almost totally dead and is still funny 18 months later (i now have this in my fingers and also the front of my lower left leg),my gp on one visit was worried that i had no reflexes in that leg and referred me for nerve tests which came back normal despite the fact my foot was still dead and i couldnt feel the needles in that side.
i get tingling all over in different places on different days and hear a sort of "fizzing" in my skull,the tingling can be in my hands,legs or face,shoulders,neck or back,when the tingling is in my face my face goes slightly numb,my jaw clenches and people have commented that my head is nodding (i dont notice this) people also comment on my eyes looking strange ! i also get muscle spasms in my upper right arm and shaking of the hands occasionally.
about a year ago i started to get a horrible "vibrating" that starts in my stomach and spreads up to my face,this usually happens at night when i am laying down,it is most disturbing and keeps me awake,
four years ago i started to get a hum in my right ear that sounds like a diesel engine running,an audiologist presecribed a white noise generator and said my problem was caused by a problem in the wiring in my brain.i did some tests myself and discovered that the hum is not stress related,sometimes i get vertigo with it and sometimes i dont.
i have repeated infections and cellulitis,i have often had infected lymph nodes with one case being so bad in my face/jaw/neck that i was hospitalised and doctors mentioned possible "ludwigs angina" due to the infections i have had diabetes tests that have come back normal,that is the only thing tests the doctors have done in regard to the infections.
my immune system is so useless that i get repeated chest infections one of which turned to pneumonia and i was in hospital for a week.
other
i have polycystic ovaries with no menstrual cycle at all ( one period a year if i am lucky) and weight gain thats hard to shift,i have blocked fallopian tube on the right side and have had one child who is 19 (he suffers alot of the same problems as me such as the hum,the vertigo and repeated infections !!!)
i am not on any medication,i came off lithium years ago incase this was causing the problems,being off it has made no difference
i am addicted to soluble panadol which was the only thing that slightly helped my head pains .....taking up to 2 EVERY HOUR some days,this started three years ago,i have mentioned it to every doctor who do not seem to think its important,i think they assume im not really taking it due to my mental health issues,well they will have to apologise if i damage my liver !!
i do not take recreational drugs and never have,i do not drink
i dont think the panadol is the cause as i have had these problems 15 years or longer.
i have a ganglion on my right wrist
i get skin tags
i have a brown flat,not itching rash all over my chest,neck and face,one doctor said it was pitiriasis versicolour but medication given to me for that didnt work,i have had this rash for 18 years.
i suffered with rages that i often didnt remember having,it was like my brain had a mind of its own !
environmental etc
i have looked at the possibility that my past jobs may be a link
i used to be a veterinary nurse then a dental nurse,i requested mercury poisoning tests due to the dental work,these came back normal
i have lived in a house for ten years with mould and asbestos (no longer living there)

personally i think that alot of problems are due to my spine but only my neck has been scanned,all my GP says when i complain of my problems is that "oh its your bad side"
i think i may also have some sort of endocrine and lymphatic problem
no one is listening to me so i would really appreciate some ideas
i am desperate to get back to work and at the moment its not possible due to the vertigo that i cannot predict when it happens
i seem to be getting worse over the years but GP is not interested as my scans came back clear..some of these scans were eight years ago !! but there is no interest in having me rescanned.
Mental health wise i am fine and have been for the last five years.
I am pretty disgusted that it could be something as simple as a doctor bothering to look at all the symptoms together,they would probably manage to work it out,i feel i have been left to suffer for no reason other than their laziness or their belief that people with mental health problems are imagining physical illness

thanks so much for your time

 
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Old 01-13-2009, 09:05 AM   #2
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r0siegirll HB User
Re: not sure which category to put this,various problems for over 15 years !!

I'm not sure what is wrong with you.

But I know that this >>"when i had a general anaesthetic and the drug was put through my right arm i screamed in
pain"<< is normal.


I hope you get the help you need.

 
Old 01-14-2009, 04:02 AM   #3
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eevee HB User
Re: not sure which category to put this,various problems for over 15 years !!

thanks rosiegirll
just thought i would mention the anaesthetic thing because when i had it in the other arm it didnt hurt at all !! and i can usually take alot of pain,just wondered if i had a blockage somewhere ?

 
Old 01-15-2009, 01:29 PM   #4
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Re: not sure which category to put this,various problems for over 15 years !!

Well, I certainly feel your pain.

Quite a bit of your symptoms sound like a problem with your nerves in your cervical spine. I am sure that you have seen a neurologist. What type of scan are you talking about? (CAT Scan). If you have not had an MRI, than I would definately request or very nicely demand an MRI of your spine. This should include contrast. You do not say where you are from, so it is hard to give you recommendations of where you may try next, however, I would suggest that you obtain all of your medical records. Included in these records should be all of your childhood medical records (only if these can still be obtained.) Start researching neurologist around the country and start sending them your package without mentioning your mental health history. Some of these doctors actually have e-mail. E-mail them your history again without mentioning your mental health issues and see if any of them will respond back to you.
It is time that you start advocating for yourself. Sometimes one must take the bull by the horns.
Keep us updated with your progress

Last edited by shisslak; 01-15-2009 at 01:32 PM.

 
Old 01-16-2009, 03:20 AM   #5
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Re: not sure which category to put this,various problems for over 15 years !!

Quote:
Originally Posted by shisslak View Post
Well, I certainly feel your pain.

Quite a bit of your symptoms sound like a problem with your nerves in your cervical spine. I am sure that you have seen a neurologist. What type of scan are you talking about? (CAT Scan). If you have not had an MRI, than I would definately request or very nicely demand an MRI of your spine. This should include contrast. You do not say where you are from, so it is hard to give you recommendations of where you may try next, however, I would suggest that you obtain all of your medical records. Included in these records should be all of your childhood medical records (only if these can still be obtained.) Start researching neurologist around the country and start sending them your package without mentioning your mental health history. Some of these doctors actually have e-mail. E-mail them your history again without mentioning your mental health issues and see if any of them will respond back to you.
It is time that you start advocating for yourself. Sometimes one must take the bull by the horns.
Keep us updated with your progress
thanks shisslak
im from UK so its hard to contact doctors when you are not one of their patients !! they wont just answer emails / letters from people not on their list

i cant see a doctor without them knowing my mental health issues because it is all on record and the records follow you from doctor to doctor

it was an MRI of the neck i had and yes i asked for a full spine MRI but was declined
even my husband has been to the GP saying he wants something done as he is fed up with seeing me suffer and still they dont do anything

i saw a neurologist about six years ago but i am alot worse since then
last night i was kept awake by the "vibrating" and this morning i have tingling in my scalp and my spine feels "twisted" it took me ages to get out of bed

beleieve me i have tried advocating for myself and just get accused of being a complainer,due to my mental health problem,i just cant win !!!
thanks again for your reply,its so nice to be listened to

Last edited by eevee; 01-16-2009 at 03:22 AM.

 
Old 01-20-2009, 03:09 PM   #6
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bethsheba HB Userbethsheba HB Userbethsheba HB Userbethsheba HB Userbethsheba HB User
Re: not sure which category to put this,various problems for over 15 years !!

Eevee,

Welcome to the boards, although I wish it were under different circumstances.

Given your medical history, your symptoms, and the fact the doctors can't find the origin of your problems, I would suggest you do some serious reading about lyme disease and its coinfections. We currently don't have perfect tests for the bacterial infections that are associated with lyme so it is a very difficult disease to diagnose and many doctors rely on outdated info to diagnose it so many cases get misdiagnosed or ignored...you have many, many of the symptoms, including the rashes. Lyme can be treated with special antibiotics.

Lyme is transmitted by a tick bite (which many people don't remember getting) but it can also be transferred in the womb...in other words people have been born with Lyme disease. You'll find more info on the Lyme boards.

Bethsheba

Last edited by bethsheba; 01-20-2009 at 03:10 PM.

 
Old 01-21-2009, 07:51 AM   #7
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eevee HB User
Re: not sure which category to put this,various problems for over 15 years !!

thanks BETHSHEBA
that is a good idea
as i used to be a vet nurse i used to remove many ticks from animals !!!
thanks for your support

 
Old 01-21-2009, 09:48 PM   #8
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Re: not sure which category to put this,various problems for over 15 years !!

the numbness and tingling sounds like nerves are being pinched...the swelling that was on your neck could have been pinching nerves eventhough you were numb everywhere else, but depending on where that nerve was going it probably was affecting it...also you might have a bit of a twist to your spine which is not uncommon but it would cause numbness like i said before if a nerve was involved...a chiropractor should know that

 
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