I’m not currently diagnosed with MS.
8 years ago I experienced many of the symptoms of MS (though I didn’t know this at the time). It started with numbness in one leg for quite a significant period of time. I went to see a doctor (and was referred to a neurologist consultant) when the numbness spread to both legs, arms and face and I experienced slurred speech and a general worsening of the level of numbness and weakness which affected my mobility.
I was admitted to a neurological ward and diagnosed initially with transverse myelitis and told that this was a marker for MS and that an investigation into this would be carried out, then the many tests to rule out other conditions started. I stated that I had been very stressed over a period of time and asked if this was the cause. Initially stress was ruled out because of my clinical presentation and the tests that were completed on admission (something to do with my foot and reactions) and the doctors believed that the stress would have to be very serious to manifest in such presentation. During my stay in hospital I ended up requiring a wheelchair and significant physiotherapy. Despite many tests, that all came back negative, I was left without any significant diagnosis. I was given a course of steroids, referred to a physiotherapist and a neuropsychologist (for stress) and told that I had some wear and tare around my neck area. The hospital provided me with a set of walking sticks to support my mobility recovery. I did improve over a number of weeks (full; recovery) and have not had any symptoms for 8 years.
This brings me to now - after 8 years of no symptoms I have started to experience the same symptoms, with a few additional ones (dizziness and balance). I am firstly worried at the rate the symptoms came on this time - it took a few months last time to reach the same stage as it has reached now. I immediately went to my general GP, and looking at my history he has made a referral to a neurologist. I am awaiting this appointment. He also ordered some routine blood tests. These came back as having low levels of phosphate and calcium. I redid the blood tests after fasting and there was a slight improvement and I have been advised to monitor this over two week periods with further blood tests (I’m not really sure if this is now the main mode of investigation this time and results). This is something that was not apparent 8 years ago, and this time I am not under considerable stress.
Before I ask my questions, a reminder that I am not diagnosed as having MS, but when the initial investigation was done I was informed that any possible diagnosis would require at least 2 attacks - because the consultant spent time telling me this I think that it’s a possibility that this same direction of investigation will be taken again.
I have a few questions:
When referred to neurology again do I have to once again do all of the ‘ruling out’ tests? - I hated the lumbar puncture!
Is low phosphate and calcium levels something that anyone has experienced or could this be what’s causing my symptoms this time and not something like MS?
If the low phosphate and calcium is an entirely different thing causing symptoms should I still attend the neurologist?
I am so confused and don’t really know whether I should be pursuing another neurological appointment - the information seems to be very limited as to what’s actually happening.