I’m still off work - spending most of my time on the sofa or in bed feeling awful.
Today’s post brought me some news - my fasting blood test on Monday has showed elevated glucose so I’m going for a repeat test and an HbA1c test next Thursday.
I have now had an appointment to see the opthalmologist … on the 30th April!!!
I also managed to get through to the neurologist’s secretary who initially said she had no record of me … then eventually found my “urgent” referral from the ortho spinal consultant in November…then said she had not received the 2 letters my GP said she had sent them …then said she would send an e mail to outpatient appointments and I should hear from them within 3-4 weeks!!! This means that from the ortho spinal referral to any actual appointment - I will have been waiting more than 18 weeks!
Maybe your GP would do some phone calls instead of letters to try and speed things up?
At least you have an exceptional date for your ophthalmology appointment though: my birthday! LOL! I hope you manage to get it moved forward a bit though - it’s still too long a wait for an urgent case
Its all mad! It seems like every single test I have had done is coming back abnormal!!! - but instead of aiding diagnoses it’s all only adding to the confusion!!!
I just don’t know which way to turn! The haemotologist said because of the chronically high WBC coming back it’s some kind of inflammatory thing going on but she didn’t know what - hence the ‘lost’ referral to an endocrinologist.
Both my GP’s, the optician and neuro spinal bod are saying a demyelating disease - lesions - but not in the right place - I don’t know what would cause lesions in my frontal lobe either? Surely they shouldn’t be there??? That’s worrying me!!
Then my brain scan throws an enlarged pituitary gland into the mix!!! Why???
Last week the GP did a urine test & lo & behold - yes - blood in it! Then the blood test they did the same day came back with high WBC AND added to that…high Red Blood Cells!!!
Now this fasting blood test says high glucose!!
I feel so ill - The fasciculations in my leg muscles yesterday were unbelievable - I’ve videod them again - at the same time it felt like they were happening on my scalp - at the back left of my head - all these wierd sensations and with the constant flashing lights in my eye it’s driving me nuts!
All this waiting is driving me nuts!!
I’m at the end of my tether!!!
I feel like my whole body is packing in and nobody is helping!!
I even thought of going down town and throwing myself on the floor in order to be taken to A&E and they’d be forced to deal with e sooner!! But then I thought - they would only send me home with paracetamols if I did!!
I sent an e mail earlier to the private secretary of the neuro I am wating to see on the NHS - asking how soon I can have an appointment privately.
I can see him on the 2nd April - week Monday - for £200. I’m wondering if it’s worth it now as they say 3-4 weeks more to wait on the NHS anyway.
If we could easily afford it I would jump at it and would have done it a couple of months ago!!! - but to be honest money is tight for us at the moment and I had no idea I’d have to wait this long!!!
I thought ‘urgent’ and 2 letters and phonecalls from my GP would have mean’t sooner!! God help those who are marked as ‘non urgent’ - they must have to wait years!!!
I would pursue and complain. Yes guidelines are 18 week max wait to be seen and receive treatment but how quickly you’re seen does depend on the urgency. Usually an urgent is seen around 2-3 weeks, soon 4-6 weeks, routine 2-3months roughly and if you’ve already been waiting so long I’d kick up a stink. It’s not your problem the referral got lost and if the neuro sec has found the spinal consultant referral whether she lost it or not it’s the date from which you’re referred they have to look at.
Hope you manage to get your appointment soon. It’s completely frustrating and not good enough that you’ve had to wait so long
Sorry to hear that Jenny xx If it helps I am going through much the same thing, but fingers crossed my gp may have some news of opthy whatsit tomoz. Wow I just thought I would put my head round the door and your here good to see you Jen, cheer up fluffster is back xx
