I have just had a call from the outpatient appointments department at our hospital re my referral from the neurosurgeon to the neurologist. She told me that the referral has been flagged as ‘urgent’ and wanted me to attend in the next few days (which was a problem). She was quite adament that I had to attend within two weeks maximum. I am now a tad worried as I was told that my brain MRI was ‘normal’ - in fact I was seriously considering cancelling the referral appointment to the neuro because of this.
Is it usual for referrals to be flagged as urgent like this?
Katalina - it would be difficult for anyone to say as you’ve not mentioned why you saw the Neuro surgeon?
I was referred to neuro by spinal unit after my MRI showed lesions, my appointment was aupposed to be urgent and was a couple of months wait but after asking my sugery if this was correct, I was contacted by the hospital and saw neuro the following week,
So mine was actually treated as more urgent than I’d anticipated.
I very much doubt anyone can give you a guaranteed answer as it depends on a lot of factors
I was diagnosed with multi-level cervical spondylosis 10 years ago - a result of cervical instability and whiplash from an ill advised skydive. I had been getting symptoms that my GP thought indicated myelopathy: gradually worsening walking (slow and unsteady), strange leg sensations (pins and needles, buzzing sensations etc), urinary incontinence, balance problems (I saw the GP April?).
I saw a senior physio initially (late June) at a triaging appointment who did a neuro exam: positive babinski, hyperrefexia, spasticity, very poor balance etc. She arranged for an MRI of all my spine (July) which showed moderate to severe damage at 6 levels (sacro to lumbar) and a slight worsening of the cord space (C4 to C7) - but no signal changes. On the basis of this she referred me to the spinal surgeon I saw all those years back.
In the meantime I was due to have surgery (Wed 9th Oct) to remove the metalwork from a recent ankle fusion. The anaesthetist saw my MRI (half an hour before I went to theatre) asked a second opinion from the spinal surgeon in the adjacent theatre who said it wasn’t safe to intubate - so op was called off while they investigated and I was booked for an urgent appointment with spinal surgeon on Mon 14th Oct. Spinal surgeon checked MRI, repeated all the tests (with the same results - abnormal reflexes, atrocious balance, spasticity etc) said he thought there was still a very thin rim of csf around the cord so the cord wasn’t compromised at that point and asked for a repeat MRI of C-spine (more detailed) plus brain - ?tumour, lesions etc. This was done late November.
At my December 24th appointment with my haematologist he mentioned that I had been referred to a neurologist - wished me luck and said that he would liaise with spinal surgeon for any operations. I duly had a call from the surgeon’s secretary (a week ago) saying they had had a neurosurgery team meeting on 20th December to discuss and the opinion was that the brain scan was fine but they wanted to refer onto a neurologist as they felt something else was going on. She also told me that the spinal surgeon was considering a multi-level spinal fusion so wanted me to be referred back to him after I had been to neurology. As an aside I had also been diagnosed with double vision before Christmas - I have opthalmologist referral on 21st Jan ?muscle weakness.
At this point I was thinking it would take at least a couple of months for the neuro appointment to come through so I’d use the time to see how I went: my spine was ok - cord not compromised and brain scan was ok. Not keen on a fusion unless absolutely necessary. I put leg symptoms down to my newly discovered lower back issues. I had planned to go to my GP instead - to see if I could get some physio for the balance and walking issues.
Then I got the call. Neurologist had received the referral letter and had asked me to attend as an urgent (i.e. next available) appointment. She wanted me to go within the week but I had commitments I couldn’t change. She was adament that I had to be seen within 2 weeks maximum. Being seen on 29th (just within her two week time frame). I was bemused and have become increasingly worried about why, on earth, I needed to be seen so quickly.
Again - apologies for the length. Reading on here how long people are waiting for neuro appointments - having to chase secretaries etc it has kinda freaked me a bit.
Even Myelopathy would need to be diagnosed by a neuro so don’t go getting panicked, they probably need to discuss your MRIs etc.
Like I said, I chased mine (and hindsight did reveal that the spinal report & MRI took me about a percentage towards MS) and got my neuro appointment a week later, he still only said likely after an exam and I still had to wait another 2 months for a definite diagnosis though (brain MRI & follow up)
Good luck, I bet you are looking forward to a bit of peace & quiet
Also, if you’ve read a lot here there are a lot of people in limbo as on the whole, MS is quite difficult to diagnose - mine was a bit of a shock (I’m likely PPMS so no relapses) and wasn’t really the norm and I was horrified when I saw my MRIs, lots of spinal lesions and an absolute whopper on the brain, nothing like the ones I’d seen online!!
Thanks for the reassurances Sonia. I’m hoping it’s either a waiting list initiative or that it’s guilt over the 11th hour cancellation of my op I was actually gowned, marked with a big black cross with the venflon about to go into my arm!
Having that diagnosis so unexpectedly and seeing all those lesions on your MRI must have been a massive shock.
You hit the nail on the head re a need for peace and quiet. It’s been a crazy two years - first of all hubby was very ill and had major surgery (aortic endarterectomy)…and a very narrow escape from an early demise. It was totally out of the blue as he had always been as fit as a fiddle. Then I had my ankle fusion and was effectively bed bound for three months on twice daily heparin injections with my leg going black. Then despite the heparin shots, I developed a massive DVT (ankle to groin in 48 hours while on heparin!) - and a diagnosis of thrombophilia so put on lifetime warfarin. My INR has been all over the place so what with that and the neuro stuff I feel like I’ve been living at the hospital - I actually had three weeks when I was at the hospital every day! We just want to escape from hospitals and get our lives backI
Oh bless you hun, all that has been a bit of a nightmare, I’m not surprised you need a break! Thank god your husband recovered, right now I don’t know where I’d be without mine - he truly is my rock
Yes, it was a shock in that it was literally in the few weeks up to my appointment that I had started to panic and three weeks before diagnosis I was teaching in the gym lol (I instructed the warm up whilst doing squats so I didn’t trip over!) but I could still deadlift my body weight, I taught pole dance and even now I’m gutted I can’t do it anymore… there is still a pole up in the dining room and I do use it for exercises still but it’s not the same. luckily it has given me excellent core strength and my physio even tells me what exercises I can try to adapt to use it
Hope you get to see this neuro soon and get some answers too
My hubby is an absolute brick - he’s been to all my appointments with me - which has been no small feat over the last 18 months (there have been other health issues to re my EDS). He even negotiated Marrakech with my wheelchair - an experience nothing short of hilarious.
You’re a real trouper carrying on with your classes for so long. That must have been very tough and frightening. I imagine that being as fit as you were the physical changes must have been more apparent and frightening. My job is now desk based which means less impact on my ability to work as a result of physical deterioration which is really good. (I work contracts as it allows me to take time out when I need to healthwise and I love the social interaction that working brings - and the money is nice :). )
I’m glad you can still use your pole and look at it positively instead of a reminder of what was.
I was actually gowned, marked with a big black cross with the venflon about to go into my arm!