I am hoping to get some good advice from someone based on their own experiences.
A little about my situation:
I’m a 43 year old male who had spinal surgery in 1992 after a rugby match and had two discs L4 & L5 partly removed, as a result of this I have become accustomed to great levels of pain and numbness and tingling in the legs and just kind of got on with life and worked through the slipped discs when they happen (normally annually), and never had cause to think that numbness was connected to the surgery.
Until in 2006 I woke up and had suddenly lost the sight in my left eye, I was taken to the eye hospital in Bristol and quickly diagnosed with Optic Neuritis, my sight returned to near original state about 3 months later, following on from this my GP ordered an MRI on the brain which was the point that had me worried (naturally), he explained the reasoning behind the MRI with regards to looking for lesions on the brain that may have been caused by the Optic Neuritis.
When I returned to the GP for results he said that the MRI revealed no lesions and basically to get on with life unless anything else occurred.
It’s at this point I begin to feel very foolish admitting that I have had many moments when things aren’t right but have tried to just soldier on and wait until symptoms subside, some of which can be linked to the remnants of spinal surgery but other that mimic MS symptoms.
I would say these episodes come once or twice a year, however they are increasing in severity each time, I am just starting to feel better for the first time in two weeks, two weeks of cognitive difficulties, extreme fatigue, continence issues, dizziness, balance problems, eye flashes, and a general state of forgetfulness.
The last time I spoke to my GP about this he did agree that with the ON 8 years ago and other symptoms that perhaps MS is a consideration and mentioned about a spinal tap, I asked about the scar tissue from my previous op and then he said it would increase the risk of complications, so I declined on that basis.
So while I think that there is a strong chance that I do have MS (and I am now accepting of that after being unwell on and off for 8 years) the advice I am looking for is how I should approach the future?
I have an apt with the neuro team in Bristol at the end of this month, this was arranged at my requests, all previous visits have resulted in a few dexterity tests, some notes taken down and told thanks very much see you again some time.
But based on the severity of the most recent attack that drastically reduced my mobility I am insistent that something more needs to be done to get a diagnosis and subsequent support.
So has anyone else managed to get a diagnosis without a spinal tap and clear MRI?
I’m thinking perhaps I should request a further MRI particularly as the most recent attack is still happening . It’s great to feel awake and alive today though after a week of walking through glue with heavy hands pushing down the shoulders.
One thing is for sure from previous neuro appts that no effort is made from the staff to investigate further into a diagnosis, this time I will not be so passive and will ask for more attention to detail.
Any advice from anyone who has had similar issues with dx would be really appreciated J