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What to do in the meantime?

New diagnosis and before diagnosis
#1

I have been lurking on here for ages but finally plucking up courage to say hello.

Earlier this year I went to the GP with head that felt very full, face tingling, weird ear sensations and burning sensation in arm. When it was still there a month later I was sent for MRI and neurology apt the following day. The neurologist looked at report in my apt and showed 3 areas of concern on the scan and it might be nothing or could be indication of something like ms. The letter that followed mentioned periventricular inflammation and that tht could be indicative of inflammatory disorder of the nervous system. I was sent for LP and VEPs, both of which were fine. The follow up letter to my GP said that my initial MRI had been normal, in the right clinical context the areas could be demyleation but at this stage, I was not being diagnosed with a demyelating condition. I have a follow up apt in April 2014.

Since the initial episode I have all manner of strange sensations including dizziness, ear pain, tingling extremities, twitches, eyes seeing different colours, watering eyes (current symptom), all of which make me convinced I do have MS and I just need to wait to meet McDonald Criteria. I haven’t seen the GP about any of the other symptoms as they are disconcerting rather than painful and I don’t want to take drugs unless I have to. I did ask my GP about vitamin deficency and whether I should take vit D and he just said to take a multivitamin. Do you think I should push for a proper test or just start taking Vitamin D, (and B12?), at least then I’d feel like I’m doing something, rather than just waiting for the worst to happen. Is there anything else I should be doing now?

Thanking you in anticipation!

#2

Hi and welcome :slight_smile: It sounds to me like you are very clued up about things, which is great. It would be good idea to get your vitamin levels checked out before you start supplementing, and to get them checked regularly. Not a lot else you can do, except get on with your life really, taking each day at a time. Hope things go well in April for you. Lx

#3

I would push for a proper vitamin test. My GP said I should take vitamin B12 when I first came to him with my symptoms and then I asked him to do a blood work for vitamins, and it showed that I actually had vitamin D deficiency while my B12 was absolutely fine. And I like to think that the vitamin D has helped a bit with one of my symptoms (numb tongue and taste loss on one side)

So I think checking your vitamins might be very beneficial and treatment might help you with your symptoms until your follow up! :slight_smile:

#4

Hi, I am surprised that your GP told you to take a multivitamin, without doing a proper test. It is possible that a deficiency could mimic ms symptoms.

It is also possible to overdose on certain vitamins, so yeh, ask for a full test.

pollx