Multiple Sclerosis Discussion with My Neurologist

When I talked to my neurologist over the phone and he told me the results of my lumbar puncture and that I had Multiple Sclerosis I was pretty surprised. And not surprised at all.

That may sound like a contradiction but this had been going on for years. The questions and the MRIs. The initial MRI showed quite a few lesions which suggested MS but my neurologist didn’t think I presented with it. I was fine with that. I didn’t think I really did either.

The second MRI showed another lesion and by then in addition to the vertigo and balance issues I had, I now had drop foot. I was beginning to suspect something was up. But he didn’t think it was MS. He predominately sees MS patients so, again, I relied on him to tell me what was what. So I put it from my mind.

When I saw him again though, I had had a bad summer. The heat had caused some serious weakness and walking problems. Some other issues came up. And my right hand had gone numb again, for a second time. The initial time it had gone numb was years and years ago- but for longer than 24 hours for sure which definitely could have been a sign of MS.

So he ordered the lumbar puncture and honestly I thought he ordered it to rule it out. So I sort of thought there was a possibility but since he seemed so sure it wasn’t I also thought surely I must be wrong. I surprised myself by how shocked I was when he said it was.

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What He Then Told Me About My Case

He told me, my specific case wasn’t that severe. Based historically, on the recent MRI and his neurological assessment. That I shouldn’t anticipate a relapse anytime soon. That he didn’t want to start medication until I did have a relapse. And that we could assess when I saw him next in a year. That also I could track any usual symptoms and tell them to my doctor who could forward those to him.

This didn’t seem unusual to me at the time. He is insanely busy and understaffed which is the way it is in this province. So discussing things with my doctor and utilizing that is quite useful for the both of us. I see my doctor often enough over the phone or in person for my other medical issues and refills so this just makes common sense.

No treatment

However, after talking to other patients and doing just a little amount of research what doesn’t make sense is not starting treatment. Because treatment prevents relapses. And who knows how serious or not serious my case is or will be. Or how serious the next relapse will be. Or when it will be. MS is that unpredictable.

It terrifies me that the next relapse could be quite serious. And there is no way to predict the disabling factor in it. No way at all. Or what symptoms it will cause. And that seems pretty risky to me.

Yet, I do believe he knows what he is talking about. I haven’t had a severe progression, so he is right about that. However, can one predict the future based on the past? And can we predict where a future lesion will be or how it will effect me? I just can settle those worries in my mind.

It is scary to not know the answers. To not know enough.

What To Do?

I have made an appointment with my doctor to ask for her opinion in the matter. I will also discuss with my neurologist when I see him next. When I can have a longer, more detailed conversation with him. I will advocate for being put on medication. I really just want to wait around for some random relapse to strike some random part of my brain to start medication? It really concerns me. But I will consider what my doctor suggests.

Obviously I am worried about the unpredictability of MS. I just do not feel like waiting and seeing where or when it will strike next. I have heard what some other patients have said but I would like to hear more local patients in my area. I just am confused and I don’t know enough yet.

Maybe there is a reason to delay treatment. Maybe there are patients that do typically do this? From what I read, it isn’t the norm. But I’m new to this so I can’t be sure. Not being sure bothers me. I can’t know if not being on medication is normal or harming me. If I should be or if it is fine not to be. Clearly, our short phone call wasn’t sufficient for me to have to answers I need and an in office appointment will help. That will not come for some time though.

See also

My initial thoughts on MS diagnosis