rare conditions


YES i have a rare condition!chiariminions

YES i know nobody else locally who has one….

so WHAT?

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?
I have a LOT of chronic health problems.

  1. a chiari malformation at base of brain.
  2. headaches
  3. neurological problems
  4. asthma
  5. heart arrhythmia – electrical defect
  6. osteoarthritis
  7. constant lumbar pain
  8. 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? chiaribodyThe 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?”

Headaches are an integral part of Chiari Malformation  – an everyday variant requiring pain medication . A cocktail of some sort mixed by my patient OH.
Exhaustion. Again part of a neurological condition. But currently a part that pisses me off as so many people seem to be eager to “jolly me along” with the old “it takes time”…and i swear i KNOW they mean well, BUT i have had decompression surgery 6 months ago. I STILL feel the struggle to lift me out of bed. and shortly after getting up, showered and downstairs i NEED to sleep!
weakness. what kind of a stupid statement is “my limbs are weak” – it can be countered by you will soon start to feel better, or wait til you are more mobile… but my chiari malformation covers that too!
Balance. My physio isn’t EVEN rehab physio it is VESTIBULAR rehab physio – how to walk without falling. How to move in a “busy” environment where there is opposing motion…and you almost feel dizzy? And i expect her to do WHAT with this? Vestibular physio weekly.
Eyes. This seems pathetic. It seems NOT medical but it IS.

  • 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….
  • 20140630_0020_Fionn_Birthday

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..

weight and thus unfitness remains a problem as i have NO metabolism. Am almost completely sedentary. my LEGS are incredibly weak and ache constantly- day and night – as if they have run a marathon that the rest of my body doesn’t know about… i am now getting a wheelchair for family days out. A walk to my mammy’s grave from the gate of the cemetery is me exhausted and breathless.
BLOODS. My new symptom – as in since i got out of hospital is that i have strange readings in my blood tests. They are being repeated every few weeks…and same old same old each time. The last time they extended the search but we have now found MORE “rare” to investigate…Connective Tissue Disorders. They aren’t pretty and am really not looking forward to hearing about them…but will hardly be back to be honest. photo 1 (1)
mood. it doesn’t cheer me up….
i NEED someone local to take “umbrella care” of me and my rare bits.
😦 H
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11 comments

  1. I rant too – how support groups for rare conditions don’t have access to the services larger charities can afford to fund – specialist nurses, neuro physiotherapists, and counselling services. In an ideal world Helen you should have access to all of these and more!
    I have requested a multi disciplinary clinic even once in awhile so that people like you can see the relevant clinicians on one outpatient visit – all I can do is keep asking, and you need to let your local MLA’s know that this would benefit YOU! 🙂

  2. I agree, but I still feel your GP should treat your symptoms, a neuro surgeons job isn’t prescribing anti nausea meds unless you are under his care in hospital!!

    • oh LORD but it frustrates me… the pain in the arse factor of “who do i see?”…and i KNOW this is what i am trying not to let happen, but we ALL seem to go through it. It is really difficult. An appointment becomes a fob-off too many times.
      Hx

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