Phone call from Neuro

New diagnosis and before diagnosis
1

Hi all

I posted earlier in the week as my neuro follow up appt after brain and full spine MRI had been moved from 4th June to 23rd July. In his last letter to my GP, he said he strongly suspected MS, but was sending me for the scan to ‘confirm diagnosis’. I called neuro’s sec yesterday and she said she would ask him to call me today.

Just spoke to him and he has said he can bring my appt forward to 13th June, so that’s really good.

He said my MRI showed more lesions than my last one in December. But he said it wasn’t too bad. He just said it was abnormal. He has also said that he doesn’t think it’s enough to make a firm diagnosis but that they would probably monitor things over the next 6 months, but that we could review the scans together at my next appointment.

I am so lucky that I have a neuro who would call me himself, I know this. But I can’t deny I feel a little deflated. I had geared myself up for diagnosis after what his letter had said.

He also said on the phone that at this point, he would not consider putting me on any medication. Which, if I don’t have a diagnosis, I wouldn’t expect anyway.

I don’t know why I feel upset, but I do. He’s a neurologist, and I am not, so obviously he knows far better than me. I do feel perhaps he should have been a little less free with putting in that last letter about ‘confirming diagnosis’. I had worked myself up to accept this dx and to move forward. But at this point, it doesn’t seem I will.

Although, I doubt any neuro would give a dx over the phone. Maybe he was trying to alleviate my anxiety between now and when I see him.

I’ll have to stop second guessing and wait for my appointment I guess. Just wanted to share

For now it seems, I am to remain a firm resident of limboland

PG xx

2

Incidentally, he also mentioned LP on the phone (I haven’t had one). He said it was up to me.

I might ask at my next appointment with him whether a positive LP would lead to a dx. If it will, then I will have it done. Just to end this waiting. If he says that it won’t form a conclusive dx, then I think I will leave it.

Does anyone think that would be the right/wrong thing to do?

I’m not exactly thrilled at the idea of having an LP and only want one if it’s vital to dx.

3

Hello pandagal My advice would be to wait until the appointment before deciding on lumbar puncture. I’m afraid it can’t aways confirm diagnosis of MS but it can help with diagnosis. Sorry, not very helpful. I know you feel stressed but it sounds like your in good hands. Given that this latest scan has shown more lesions, it does seem likely you will get a diagnosis in the near future. It’s obvious there are changes happening in your brain. I hope I haven’t said anything out of order? Noreen x

4

Hi Blossom

No, you havent said anything out of order at all!

I agree, I will wait for the appointment and put the feelers out to see whether it is really worth me having an LP.

More lesions on my brain would explain my recent cognitive/thinking issues, I suppose.

Roll on 13th June. Friday the 13th… Eek!

PG xx

5

Your right about the lesions. My Neuro told me the lesions on my spine are causing the incontinence issues. Such fun :frowning: Are you really superstitious? If you are, your snookered lol :slight_smile: