YES i know nobody else locally who has one….
sometimes the things that are medically questions are unrelated to this?
life is NOT always about “pass it upwards”…
but i know now am gonna fall into the old “between stools” situation.
i LOVE my own GP…
i would not wish for any different GP.
i called into the practice –
i asked for them to increase my anti nausea medicines…
explained am having vestibular problems – both movement and eyes….and that is par for the chiarian course.
and what do they say?
i KNEW IT…i said it to the Neurosurgeon i was chatting last week in Belfast.
when you have a “rare-condition” nobody wants to make decisions on treating you.
and OBVIOUSLY they need to call my Neuro Surgeon to “ask his advice”- am sure he will be THRILLED!
so now for me, as i predicted…everything from period pain to piles will now be bounced back to specialist!
I HATE THIS!…
do we ALL find this?
and yet i did see it going to happen…
i KNOW it happens as people have complex what ifs…
yet we patients are told do not expect everything to b related to your condition….
it is HORRIBLE!
i 100% LOVE and would not change my GP …this is NOT a whinge against MY GP…it is how we get stuck!
she is a genuine, caring old fashioned- in all the right ways – Doctor. Who cares about you as a person – not one symptom.
BUT NOW…i have this “rare condition”…
i will become a YOYO patient...cos i have a rare condition!
- who OWNS me?
- who is responsible for day-to-day care?
- minor events?
- wee changes
- drugs that need tweaked?
- wee things that don’t even NEED an appointment?
- just a phonecall decision?
- a chiari malformation at base of brain.
- neurological problems
- heart arrhythmia – electrical defect
- constant lumbar pain
- prone to depression
so is the BEST way to describe me – NOT in an appointment slot, is perhaps to write a baseline list?
the medication i take on a good day and a bad day? The chiari classifies as a “rare disease” – the huge number of neurological issues it causes are much beyond a GPs remit. So i tend not to bother mentioning them – or updating on them. like do i tell her now of the physio putty and the difficulty using my full hand? my fear of developing a “claw?”
- my range of sight is poor
- my eyesight is blurred
- the double vision test is ALWAYS double
- my Right Eye can’t keep up with my left eye
- my Right eye is crooked now in pictures
- to move my Left Eye in its socket is painful
- to look to extreme ranges with left eye hurts the eye muscle – i think
- with my distance, varifocals, intermediate and close range specs i am NOT clear.
- i feel dizzy if i try to focus while i move my head
- i feel dizzy if i move my eyes and walk.
- i AM being referred to OPHTHALMOLOGIST by neurosurgeon – but should my GP know all this?
- VESTIBULAR problems….
all my numb feet, numb leg, tingling fingers, strange sensations in face… will HOPEFULLY be picked up by the neuro physiotherapist who is coming to do my “conductive nerve studies” – but again do i log THIS with my GP? So THAT little lot…and how’s the form…. WHAT am i reasonably telling her, asking her and expecting from her… is the rest of my days going to be reporting to GP…who passes me on…and shoot me on in ambulance to Belfast where they may do something..