Hi eveyone. Just to quickly re-cap on my situation, I was diagnosed in May with MS after several lesions in brain and cevical spine were found, and I tested positive with the lumberpuncture. The problem being that my neurologist didn’t know what type I have. He said I was taking a more progressive path, and refered me to an MS specailist at a different hospital. In my last post it was pointed out that it does look to be more pp than rr. It was also said that if it was to be progressive, there wouldn’t be much in the way of treatment. Since my last post, I now have a date for the MS specialist, but now I’m gong out of my mind! I’m thinking, is there any way I can try to convince the neurologist that it’s relapsing?! Surely that would be the best outcome??? I feel I owe it to myself to try and get some sort of treatment! Surely it’s my best chance??? l’m 30, and I can’t be written off just yet! If anyone can offer me any advice, I would be so greatful! You’ve all been so helpful so far!
Personally, I would have thought it’s more important to get a correct diagnosis than to try to angle for a different diagnosis, just because you feel it would change your treatment options. If you are wrongly diagnosed, and treated for a type of MS you don’t have, you’d be taking the treatment for nothing anyway, as it’s unlikely to help.
Please bear in mind that the majority of people with MS (of all types) are NOT on any disease modifying drugs (DMDs). This can be for a variety of reasons: because they have a progressive type of MS (primary or secondary); because they have RRMS, but relapses haven’t been frequent or severe enough to qualify; because they’ve tried DMDs, but they didn’t work and/or side-effects were dangerous or intolerable; or finally because they were offered them, but declined.
It would be wrong to think of all these people (the majority!) as simply on the waste heap.
By all means talk to the neuro about your concern re lack of treatment, but I do not think trying to change his mind about the diagnosis is the way forward - or will work in any case. They have criteria they use to diagnose. It’s not based on what the patient would prefer.
If you haven’t had many/any obvious relapses, even an RRMS diagnosis might still not get you DMDs, because your relapses aren’t deemed frequent and/or severe enough (usually a minimum of two clinically significant ones in two years, to qualify).
I don’t think it’s necessarily the case that there will never be any treatment for primary progressive (at least, I hope not!) If it’s confirmed to be pp, you could consider signing up for trials (though I could write another whole essay on the pros and cons of that - obviously it’s a very personal thing, and would depend what it’s a trial of, and the projected risks and benefits…)
Some people do very well, despite having PPMS and/or not having treatment. It’s not the case that people with PPMS, or people without treatment all do worse. Like almost everything about MS, it’s unique to the individual, and some people get along very well for many years, regardless.
I can’t promise you’ll be one of them, but you shouldn’t assume you won’t be, either. Don’t fall into the trap of writing yourself off, just because your diagnosis is X instead of Y. The MS doesn’t know what it’s been called!