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1st visit with the neurologist coming up. We've got some questions e.g. re. study on high doses of vitamin D / reduction in conversion to MS etc. Pretty sure we'll know how this will go but any advice as to what to push for would be appreciated.
Hi
Support in having blood tests if you need their backing for your GP to do it. Mainly to test vit d level regularily so you can monitor your suplementing. But perhaps you already have this support for your husband :-)
It can depend on how you and your daughter interact with medical professionals (and how the individual medical professional operates). I like to have a less formal level of interaction and, after connecting with them, towards the end of the consultation I would consider saying something like, "Thanks so much for your time and advice. We really appreciate it. Can I ask: off the record, if this were your daughter, is there anything you would recommend she do, regardless of whether it has currently been backed up by randomised controlled testing and so on?". It can garner some interesting responses!
Hi Sophie,

I know you’ve been doing your research about Scottish neurologists, so hopefully you have found one who is at least sympathetic and informed about diet, vitamin D etc. Wouldn’t it be great if the neurologist backed up all the things that you’ve been telling your daughter about OMS?

Let’s assume that this ideal scenario does not happen. I guess what you don’t want is the typical “wait and see” advice. Worse still would be “don’t worry about it, you probably won’t get MS” and worse still would be “don’t change your diet, there’s no point”.

Depending on the severity of the unhelpful advice, I would probe further about the conversion of optic neuritis to MS and the risk factors for having another MS-type episode. The problem is, we know the answers to these questions, or at least we think we do, but I’m not sure the neurologist will agree.

I was given the “don’t worry, you probably won’t get MS” piece of advice. This was reassuring at the time, but ultimately unhelpful. In retrospect it would have been better if I had been told "you're unlikely to get MS if you adopt these very important lifestyle changes". Personally I feel everyone with a demyelinating disease should try and minimise their risk factors.

Needless to say, I hope “don’t worry, you probably won’t get MS” turns out to be 100% accurate in your daughter’s case.

Harriet
Many thanks for your replies; they’ve been very helpful. I’d be a bit lost without this forum – especially just now.

We did ask about Vitamin D levels and we're going to get that tested. The problem was that our GP was OK about the 1st check on levels but getting regular checks is going to be a challenge. Are you from the UK Veg? Have you found this easy to do on a regular basis?
We've recently doubled her dose to 10,000ius a day. I was interested in a study I found on this site about one episode of ON and the reduction in the conversion to MS by those taking higher doses. We’d really like to check levels to see if this is enough though.

Thank you Valada for that excellent suggestion of a script to use. Our 1st visit was OK – much better that my husband’s 1st visit. The neurologist was really quite interested in the programme we’re following and the visit ended up as an info sharing about OMS – which was encouraging.

Hazza thanks again for your continuing support; it’s very much appreciated. Your story is giving us a lot of hope, especially re. getting started early on the recovery program.
Luckily my daughter has seen her father doing well and has taken on quite a number of dietary and lifestyle changes in the past few months. I’m so relieved that she’s taking our advice.
We had the ‘diet doesn’t have an impact’ with my husband’s neurologist BUT my daughter can clearly see that it does. She has an MRI planned in the next month so we’ll see what that shows up. All we’re hoping for at this point is that getting started early will really help in the long term.
Sounds promising for you :-)
Yes I am in UK. I used to book Dr appointment and then get ok to book nurse for blood test. After asking could I just manage making my own 6 monthly bookings so for years now I just ring and book straight with the nurse and then ring reception for my results and if Dr concerned they leave note on my file when I ring.
I get vit d, b12, calcium and iron every 6 months. Make sure you ask for the right vit d test.
WOW Veg - what a fantastic service. How did you manage to get that?
Asked nicely and they probably see I am mature in my approach to self help plus it frees up a Dr appointment for someone else who is sick to use. I did pick which Dr I asked mind, I have a practice with many and although I am registered with one I do pick who I see depending on what I need support with.
Just so glad I get this support with easy arrangement for me to manage. Oh I also added Cholesterol in the last two but now I know I am a steady figure I wont bother doing that again.
I get my results printed out and collect from reception.
Yes it illustrates what can be done when you have the right doc and a good relationship. It takes a bit of time and good communication but once there is trust on both sides it is so much easier.
Dx 1992 OMS 25-2-09
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