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Hi

My partner has her first neurology appointment tomorrow with the MS specialist.

We are in the U.K. And I want to ensure she gets the best care possible.

Typically people in the U.K. How offen do you have appointments with your Neurologist and how often do you get MRI's.

I want a neurologist that is on board with NEDA. I believe with the right neurologist, the OMS lifestyle and a good DMD (thinking tecfidera) she has the best chance at remaining disease free.

Any information would be so helpful so I can ensure she is taken care of properly and not dropped through the net like she was at the start of this journey.

Thank you in advance x
Hi

I think you will find that there is a great variety in neurologists. Because MS is such a complex condition, there are many different ideas as to how best to treat it. I have recently moved house so find myself in the care of a new neuro. He is younger than my last neuro, and I feel I will get on better with him, but he is not totally onboard with OMS. He seems to respect my choices, but would much rather throw DMDs at me. (Having said that, my old neuro was completely dismissive of OMS, so it's an improvement!)

Before I moved, I had started looking into new drug options. My old neuro presented me with three drugs he thought were going to be the most effective for me; my new neuro totally disagrees with him and has offered me 3 different treatments.

It is great that you are already armed and prepared with information, and you have an idea of what you want.

In terms of MRIs, I have only had 3 in the last 9 years, and one of those was because I took part in a research trial. MRIs are not an exact science. Some people have lots of lesions but very little disease activity, whereas others have very few lesions but lots of activity, so I wouldn't put too much importance on them.

I hope you find a supportive neuro, and one who at least respects your choices.

Rachel
Thanks Rachel. The consultant was a bit blunt - when I asked how many lesions she had, he said 'why do you want to know that' and then proceeded to tell me that its only relevant whether its low, medium or high and said he was low to medium. I have no idea what low to medium means.

Asked about her eyes not improving - he said the inflammation on the left optic nerve was large so she might get some sight back she might not.

The MS nurse after had a better bedside manner - although they scowl when you say the OMS diet and say it's not scientifically proven - when I said how much vit d she was taking, she said we recommend 2000.

They diagnosed RRMS - but then took more bloods to confirm the diagnosis. They also said they would do a repeat MRI in around 6 weeks to check the lesion and see what DMD's she might be offered.
Hi
I had one 23 years ago and then a second 11 years ago, so I guess it depends on how busy your imaging centre is.
My Neurologist, now retired, was supportive of a low sat fat diet and whole food eating well (not Sainbury's eating well for less) exercise and vitamin d, my local GP practice are also supportive of what I am doing. I realised some time ago I only need their support I do not need their agreement. I read as much as I could to feel better able to make my decisions on my health. I did not want to tread the path of statistics but make my path of my own with the best information I could read. This is an evidence based approach and their is plenty of history to it with the grounding foundation of professors Swank's work though OMS has evolved forward from there and there is plenty to read on the HOLISM study papers. Don't wait to be told oh OK then as that might be years away and look at that time lost as they can't buy it back for you. There are Dr's following this path who given their own choice aren't doing nothing but doing something. It is not one or the other but bringing together a collection of tools, including personal choice of medication, to promote body and mind health. Being a passenger doesn't give you any empowerment, take the driving seat and the energy that comes from doing something.
Hi veg

Thank you so much for that reply it was really empowering and made me feel so much better after we came out of the appointment deflated! I can't tell you how much your reply meant!

We are fully embracing the OMS lifestyle, the only thing I'm struggling getting my partner to follow is the vitamin d, she is scared to take more than 4000 although I have told her all the facts.
Hello

I’m really pleased that you found OMS so early!

As to vitamin D - does she know her current level? In UK it is measured in nmol/L. OMS recommends being at 150 to 250 nmol/L. When I started I was at 51 and now hover between 150 and 200, 6 years after starting OMS and thirty years after dx. Still walking unaided by the way. I take 10000IU a day despite my Neuro advising max 4000 a few years ago. I think he knows I didn’t change! If your partner gets a vit D test from her GP she will know where she’s starting from. My GP tests mine every 6 months but she’s very supportive of what I’m doing as she sees I’m so well. If the GP is reluctant, some get it done online, you could search the forum for info on that. Some on here recommend a mega dose first but I never did that myself.
Well done for being so supportive too. As Rachel said it’s great that you’re so well informed already.
Best wishes, Sue
MS dx 1989, OMS Jan 2013
Hi sc72

Thank you for your reply. She got tested by the GP and was around 83 (we had been supplementing by then). She is currently taking 6000 a day and we have convinced the GP to arranged 3 monthly blood tests to monitor. We told him we wanted her to be between 150 and 200 and surprisingly he seemed ok with that. He just said to bring something in that showed that level. So will copy him the recommended for OMS.

To be fair - he has been very supportive and we feel lucky to have him. (He better never retire or move ;)
Hi there,.
firstly can I say what a lovely partner you are, so supportive. This is an aspect that many people lack, and proven through research.
I had the privilege of attending a retreat that Professor George Jelinek was on. He was life changing.
"I80 -225 nmol of vit D3 is where we should be. This provides us with 70% immunity". I felt so much safer when i heard this, and for my twins future.
Professor Jelinek shared with us on the retreat, that he has never had a repeat M.R.I. after diagnosis. He told us that "there was no point."
So that was it for me I thought, well if it's good enough for him, then why should I bother!.. So 17 years later and apart from bladder frequency, I am symptom free. I have followed O.M.S for 7 years and absolutely love it.
Your Neuro sounds cool.
Take care, love freely, support her.
All the best to you both.
Rose xx
Hi Rose

Thank you so much for your reply. I am trying to be as supportive as I can be - this is a terrifying journey and I just want her to have the best chance possible.

She is humouring me I think and still taking 6000 - pending another blood test in February/March to see where the levels are at.

Hopefully, I can convince her to keep them up.
....do you know her nmol reading of vitaminD3? You must know what level she is in order to know how much she needs to take. She will probably need a mega dose to get her in the "safe zone" (180-225 nmol). Some people absorb vitD3 very well and others do not. Body fat has a bearing on this.
Professor Jelinek stated "that if a Doctor or Neurologist had an issue with taking high doses of Vit D3 then ask them to present evidence that it is harmful."
Sometimes Neuros need to be reminded that this an evidence-based program.
All the very best and apologies if you know this information already.
Rose xx
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