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Not diagnosed

Hi,

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.

Hello Gordie

To answer the first of your questions, to be investigated by a neurologist, I’d expect that many of the tests would be repeated. But not the lumbar puncture. If the LP was negative 8 years ago, then it would still be negative (as far as I know).

Having a negative LP doesn’t mean a person definitely doesn’t have MS, only 80 to 95% of people with MS have positive LPs.

But if you were to have negative MRI scans again, you definitely wouldn’t have MS.

I’m unaware of any link between phosphate and calcium with MS. Nor whether these could be causing your symptoms. It could be that your low levels are mimicking MS. You’d need to speak to your GP about that.

Personally, I’d be inclined to let the referral to neurology stand. It could take some time for an appointment to come through. If in the meantime you figure out a different cause for your symptoms, you could always cancel any appointment that’s been arranged.

Best of luck

Sue

Firstly, thanks very much for your reply!

I’ve not been very clear - the Lumbar Puncture confirmed (as far as I remember) Transverse Myelitis, this was what the steroids were given for, but the MRI scans were inconclusive (and showed nominal scarring around the neck?). To be honest, I didn’t really understand a lot of what was going on at the time.

I think the best course of action is most definitely what you suggest - see if other tests can figure a different cause - the problem is nothing much has been said regarding the blood tests apart from it needs to be monitored. I’m thinking that the doctor may just let the neurologist know about this and let them investigate any links, since he was reluctant to treat anything until I had once again seen a neurologist after reading the letter that the hospital to gave to the GP when I was discharged.

Thanks once again for your valuable time!

I would imagine the LP would have identified oligoclonal bands which, so long as they weren’t in both CSF and blood serum might have made the neurologist lean towards MS as a diagnosis. Or at least CIS. I believe that to diagnose TM, doctors would have to rule MS out. And to do this they’d look at the presence or absence of O bands in the CSF. If there are O bands, then MS would be more likely to be diagnosed and if not, the TM.

The trouble with anything neurological is that we just don’t understand what the tests are for, what results mean, or might mean, or really any of the process.

It’s only later, when diagnosed with X or Y, and having spent a lot of time reading, that we get to understand what the hell is going on.

I remember when I was first given MRI, LP and VEP. I had no clue what I was being tested for. Even though I was an inpatient in a bed next to a woman with advanced MS, I did not in any way connect my symptoms and tests with ‘her’ disease. Everything just whizzed over my head as I submitted to examination after examination by medical students. I thought I was a medical mystery and that’s why they all wanted to examine me! But that was way before the internet came everywhere with us! It was 1997.

Good luck with the next bit of medical mayhem. You might find it’s useful to start keeping a diary or timeline of what has happened to you and when. It will help as you go to various appointments.

Sue