Functional Medicine for MS - My 1st appointment

I had my first appointment with my new functional medicine doctor a few months ago so I thought I'd share with you how it all went incase it's something you might be interested in or fascinated by. This post includes why I decided to see someone, what functional medicine actually is, the consultation, the questions he asked me, the test's he ordered for me and the costs involved.

Although I've wanted to work with someone like this ever since my diagnosis the catalyst for booking my appointment came after my experience with low Iron & B vitamins earlier this year. After that experience I felt pretty let down by conventional medicine. When I got my blood tests back both my GP and my neurologist told me my blood work looked "great" and "fine" yet I still had distressing symptoms to the point I thought I was relapsing. I've written about that experience and all the symptoms I had in this post - The Ebs & flow of healing - Iron and B vitamins . My neurologist suggested I had a virus and my GP offered absolutely no solution at all, except to say it must be MS which only further panicked me into thinking I was relapsing. So I did my own research (as I do) and trusted my own gut instincts and luckily just re-starting something as simple as my Iron and B vitamin supplements again worked. My worsened nystagmus and double vision had corrected itself almost over night and everything else slowly got better over the weeks and months that followed. I was so relieved I didn't have to take steroids, go in to hospital or deal with a relapse.

That whole experience left me feeling pretty helpless and got me thinking - what am I ment to do when the doctors I thought were ment to help me can't? Am I ment to just suffer in addition to what I'm already dealing with in healing MS? what if something like this happens again in my future and I can't help myself?. I realised I needed someone who I can trust to help me with my health and vitality on a holistic level, someone I could turn to during the times when conventional medicine and my neurologist can't help me. Don't get me wrong, I trust my neurologist 100% when it comes to managing MS and GP's are fantastic and very needed and crucial for anything acute or infectious, both are integral for helping one manage MS.  But over the years I'd been hearing great things about functional medicine through listening to health podcasts, watching documentaries and web searches. I kept hearing that anyone with autoimmune disease should be working with a really good functional medicine doctor to help resolve any underlying issues that could be causing or aggravating their condition. Things like toxicity from mold or heavy metals, genetics, viruses and more.

Over the years since diagnosis Ben and I have been recommend a few healing centres and naturopaths, so I ended up going with a referral we'd been recommended from one of Bens old work colleagues who also had an autoimmune condition and said this clinic had helped her. However she said be prepared to pay for lots of expensive tests, which was another reason I'd been putting it off. But I thought I can't put a price on my health, and up until this point I've been the driving force behind my recovery, I havn't worked with anyone so I really felt it was time. The Dr I chose to see is a Lyme & Autoimmune Specialist which I thought was the closest match for MS. I searched high and low for a Functional Dr here in Sydney that specialises is MS but unfortunately I came up short. 

Incase your wondering what functional medicine is compared to conventional medicine (like I was) I've included this short clip (above) by Dr Mark Hymen which helps to explain the difference really well.

The consultation

I had really high hopes for my new Dr and I to be on the same page health wise and to have a good chat about everything - MS, the OMS program, my healing journey, maybe triggers for MS and ultimately for confirmation that I was on the right track with everything I was already doing because I love chatting to people about this kind of thing. However it felt much like a normal doctors visit but with more questions and not much of a response to the dietary and lifestyle changes I'd already made.

I told him that for the most part thanks to Tysabri and The Overcoming MS program I'm actually doing really well considering where I was but I'm still not 100% and I want to get even better. I took all my supplements with me to show him which he noted down. These included things like vitamin D3, probiotics and iron & b vitamin supplements. I also showed him the OMS book and said I'd been doing this recovery program and explained all the different elements to the program. He unfortunately said he'd never seen the book before so I'm happy I showed him and it's now on his radar, hopefully he'll remember it in the future with his other patients.

He asked me a lot of interesting questions like what countries had I travelled to in the past? is there a history of MS or cancer in my family? how am I sleeping? how regularly do I go to the toilet? do I have any food allergies or intolerances? and have I been tested for Lyme Disease before. I took the recent blood work I'd had done then he asked me how my adrenals are which was interesting. I suspect I've had problems with my adrenals for years so I asked to be tested. Ever since I got Glandular Fever and Epstein Barr virus in my teens I think my adrenals have been up and down. It's only since discovering adaptogenic herbs, things like Medicinal Mushrooms and Rhodiola that I started researching about what adrenal fatigue actually is and how I can support my body.

One test which I forgot to bring up was for mold toxicity. I flatted in a house directly before diagnosis with black mold on the ceiling of the bathroom and water leaking through the structure of the building. I've always wondered whether that was one of the pre-curser's to my diagnosis as funny things started happening once we moved in. My hormones went out of whack, I started experiencing overwhelming tiredness and I had a nasty fall out running a few months before diagnosis which was really strange for me. I'd never ever fallen out running before and I'd been a runner for years. I remember saying to Ben, this feels like it could be the start of something more sinister - how right I was!

After talking through all the questions he handed me several pieces of paper for various tests to have done and we booked a follow up appointment. That initial appointment cost $450 aus with any follow ups costing $250 aus. But don’t let that put you off as I walked away with all the tests I wanted so I'm really happy I went.

I've listed all of these tests below with the cost in Aussie dollars beside each.

the tests & cost

  • Lyme Disease & Chlamydia Pneumoniae Blood tests - $440 aus together

He said Lyme and MS are very similar. When I got my blood taken for Lyme the specialists who were taking my blood (fascinating women - I could have talked to them all day) advised me to get tested for Chlamydia Pneumoniae as well (not to be confused with the STD) as they said it's very common amongst people with MS. These blood tests were taken at a special clinic in the city.

  • heavy metals Hair Tissue Mineral Analysis - $120 aus

A hair sample trimmed from un-dyed hair from all over my head (1 tablespoon full) for detecting heavy metals. I put my trimmed locks in a sealed envelope and sent it back to them in the post.

  • Adreno-cortext Stress Profile - $110

For this test I filled 4 small plastic viles that Nutripath sent to me with my saliva. I took the samples spread throughout the day, all at different times eg 8am, 12pm, 4pm, 8pm. I froze the samples for at least an 1hr then sent them back to the lab (express post) to be tested.

  • heavy metals Pre-chelation morning urine - $160

Taken first thing in the morning. I wasn't allowed to eat fish for 4 days prior incase of further heavy metal exposure. This was also frozen for at least an hour then express posted back to the lab.

  • Blood tests - DHEA CORT, MTHFRmercury, Immunology ANA - $299 aud - $89.10 medicare rebate = total $210

Additional blood tests for adrenals, mercury, methylation which is a DNA test, and Antinuclear antibodies which I'd never heard of before but seems to be autoimmune related. These blood tests were taken all together at my local medical clinic.

All up including my first appointment, all the tests he ordered for me and my follow-up appointment in order to get my results will be $1580 aus.

Once I got the scripts I rang and ordered my test kits for each of the above tests, then staggered doing each test over the next few months to help spread the cost. I've finally finished all of them and their all sent now. I'm really looking forward to getting all the results at my follow up appointment in the next few months. I will share the results with you in a follow-up post and let you know what my plan of action is from there, I hope it's not too brutal and it offers some answers.

I'm also getting all my silver fillings removed (6) by a holistic dentist, my first appointment is next month - I can't wait!!, so having the heavy metal tests done before removal will be interesting to see. 

I hope this has helped! Let me know if you have any questions below or if you guys have seen any Functional or Integrative Dr's or great naturopaths and how your experience was. I'd love to know what other peoples experiences have been and what tests you've had done. I havn't spoken to many people with MS who've been down this path. Has anyone had the same tests as me? did you feel better after getting the results and a treatment plan? any advice, tips, personal experiences I'd love to hear!

Much love!

Simonne x