Hi
Your GP sounds like the old school neurologists who used to think that delaying a possible/probable diagnosis of MS was good for the patient. And for some in the old pre DMD days they were right.
This is what happened to me: in 1997 I started with a numb finger, that became a numb hand and numb leg. I saw my GP who referred me to a neurologist. The neurologist admitted me to hospital for tests. He did an MRI, an LP (lumber puncture) and a VEP (visual evoked potential). When the time came to give me results, a junior doctor came and said “you have a lesion in your neck but you haven’t got MS!” “Of course I haven’t” I replied, “and what’s a lesion?” In fact I laughed at the suggestion. No one had mentioned MS to me as a possibility and in fact there was a woman in the bed next to mine who was pretty disabled by MS, either SP or PP. Of course these were the days before Dr Google. He said they would give me a 3 day course of IV steroids and I’d get better over time.
So I went away, gradually I got better, I went to a follow up appointment with the neurologist who seemed to have nothing to say to me, just that he’d see me in 6 months. I didn’t see the point of that because I wasn’t ill. My toes never quite recovered, I haven’t been able to feel them ever since, but that was the only ongoing problem.
5 years went by, I had various little problems, optic neuritis (twice), periods where my legs kept spasming, the hug once, I fell over a couple of times and I just managed to ignore them all, I took more risks with my job, failed to take out any kind of insurance of the kind your doctor mentioned and lived my life.
Then I had a really bad relapse. I had weakness in my legs, terrible spasms, the hug really badly, so I went to a GP who referred me to another neurologist who asked me what I thought it was, “MS” I said, “so do I” he replied. He arranged for another MRI where he confirmed the results.
I later got a look at the letter sent by the original neuro. In it he had said there was only one lesion in the spine, but there were oligoclonal bands in the CSF and together with the symptoms it showed evidence of a demylinating disease. But he didn’t want to mention this to me at this point.
You see there was a school of thought that if you tell a person they might have MS, they then live their life as if they do have MS, whereas if they have no idea, they’ll just carry on regardless. In 1997, this was normal, but at that time, even if I’d continued to see a neurologist every 6 months and had MS diagnosed maybe a year or two after the first relapse, there were no DMDs available to reduce relapses. The risk sharing scheme which allowed beta-interferon and Copaxone to be generally prescribed to people with RRMS only started in 2002. Which was in fact the year I was finally diagnosed.
Had I been diagnosed earlier, I would have lived my life with MS and no treatment. Instead I lived my blissfully ignorant life with mystery symptoms coming and going and no treatment.
Today there are numerous DMDs; you can (if you have a good neurologist), attack it hard as Katy has, with Lemtrada and within a couple of years it will hopefully be as if it never happened. You may never become disabled. Or you may treat it with any one of a number of other DMDs if you choose to.
If you take your GPs advice, and ignore potential symptoms, you could also find you are living with phantom MS that isn’t even there, you won’t know until you have it tested. Obviously it’s your decision. For me, it was ultimately the right thing not to know. I was miffed when I first discovered that the neurologist had strong suspicions but didn’t tell me, but in retrospect it was right for me.
Only you can decide what is right for you, have it tested or not. You might have MS, or maybe not. You may have MS and take an agressive treatment, or a less agressive one, or decide to do nothing.
Best of luck what ever you decide.
Sue