The ebbs & flows of healing MS, Iron & B vitamins

please always talk to your doctor first if you have concerns about your health or think you might be relapsing

Makorori Beach, New Zealand.

Makorori Beach, New Zealand.

Healing MS is a journey no-one could have prepared me for after my diagnosis. During those initial weeks when I was in hospital we were told by the physio's that symptoms naturally fluctuate from day to day, which we quickly learnt.

Although I've had such a great recovery on the whole it hasn't been without it's ups and downs and still isn't. For me it has never been a steady incline of better day after better day compounding as they go with no hiccups or temporary regressions. It's almost as if the healing course is relapsing remitting in itself. I find myself constantly adjusting to a new way of functioning, a new normal, whether it's a few great leaps forward or several steps back. After 3 years healing with this illness I'm beginning to understand this is all part of the wild ride that is - healing multiple sclerosis. It ebbs and flows like the tide with no specific rhythm, constantly sweeping forwards and backwards. And just like the ocean it can be wild and choppy some days and beautifully calm the next.

With me, I have periods where things go along swimmingly, my symptoms calm and almost un-noticeable and I start to feel like my old self again. These times are always golden. I feel so positive, happy and hopeful, which can last for months on end. I almost get a false sense of security in my healing and think it'll all be smooth sailing. Then all of a sudden my symptoms will flare due to any number of things, making me feel like I've taken 3 giant leaps backwards. This almost certainly has me feeling disappointed in my progress, questioning everything and worried I'm not healing at all.

My triggers can be anything, sometimes an infection, a fluctuation in my hormones, a virus, gastro or the flu. Other times it's work stress, family or social pressures or I just know I've been pushing it a little too much lately. But sometimes it can feel like there is just no rhyme or reason to it.

During this time I've experienced all of the above sicknesses and each time I worried I was relapsing, but I never was. I've had the flu a few times, a horrendous gastro bug that knocked me around for weeks on end and many UTI infections (yes MS is glamorous!), and I've also had natural fluctuations. My hormones always knock me around a little every month, they affect my eyes, energy levels and mood and work stress just throws off everything. But my latest ebb really scared me and had me thinking I was about to relapse hard.

My latest ebb 

Coming off the back of Christmas and New Year I hadn't been feeling great. I worked a lot in the lead up to Christmas and by Christmas Eve I was experiencing random head pain, felt more off balance then normal, was literally exhausted and my nystagmus had slightly worsened. I put it all down to MS and a busy work schedule. I knew I'd been pushing it lately and it was the holidays soon so I could rest and get back on track.

Then a few weeks in to the new year I went for a swim at the beach and realised I was struggling with my balance in the water and my eyes were off when I looked up the beach to find my towl. I thought maybe I was dehydrated or just tired and needed to rest so I spent all afternoon resting. But when I woke up Sunday morning and had double vision and my nystagmus had worsened I started to really panic.

I resolved to call my nuero first thing Monday and do heaps of meditation in the mean time to calm myself down. I think I meditated 4 or 5 times that day. As I mulled over my situation I wondered if maybe I just needed some vitamin D, a walk and some fresh air. But every time I would do the smallest thing I would get out of breath which was really odd for me. I also felt very flat, was overly emotional, had anxiety, nausea, appetite and weight loss. I was forcing smoothies and food down when I just couldn't stomach it.

My neuro called me back Tuesday, I explained all my crazy symptoms, he suspected it was just a virus and told me if it didn't improve by Thursday (2 days later) to call him. So I decided to go to my GP and get some blood tests done in the mean time, as my gut was telling me to check my iron and B12 levels. Being on a mainly plant-based diet on OMS I hadn't supplemented with iron or B12 in 4-5 months and my fish consumption had also dipped. Although my GP said my blood work by his standards were "great", upon closer inspection I realised my ferritin (iron stores) and my B12 levels were on the lower edge of normal. Considering in the past when they'd been higher and I'd felt much better, I thought there was no harm in buying some some liquid iron and B complex vitamins and start supplementing again, I also upped my seafood intake to get as much nutrition as possible. By Thursday my nystagmus had calmed right down and my eyes had stopped trying to go into double vision and from then everything else has slowly returned to normal. My appetites back, the nausea is gone, my fatigue is 10 times better, no more shortness of breath, and my mood is back to normal. I've read it can take time for iron stores to improve as new red blood cells need to be formed. It took me a good month to come right and I'm still slowly improving.

Not the best way to kick off 2018 but a good lesson learnt. So please if your vegan, plant-based or on OMS watch your iron and B-vitamin levels, as it is possible to feel worse if you don't get enough. You'll need to find what's right for you as everyone is so biologically different. You may be perfectly fine, I have a history of anaemia so I have to be really careful.

Also, B12 deficiency and MS are very similar and it can take months to years for a deficiency to show up depending on your diet which can present in neurological symptoms much the same as MS. I would definitely keep an eye on your levels with regular blood tests and track how your feeling when your levels are lower or higher. Tell your doctor your on a special plant-based diet and they will take you more seriously as they consider us to have "multiple dietary deficiencies" (because we don't eat red meat, birds or dairy). I'm not kidding, that is literally what my GP told me. 

If you have autoimmune disorders, then you should get your vitamin B12 levels checked routinely, as your risk for developing autoimmune pernicious anemia is that much higher. Also, many of the symptoms of vitamin B12 deficiency can mimic those of fibromyalgia, chronic fatigue syndrome, celiac disease, and other autoimmune system disorders. So, to catch vitamin B12 deficiency early and prevent neurological ailments, it’s important to take regular blood screenings for vitamin B12 deficiency.

It's also important to remember that healing MS naturally ebbs and flows due to any number of things, but it doesn't mean your not healing in the long run. I have to remind myself of this time and time again. What's crucial is knowing your triggers, identifying them and creating a little plan for yourself to resolve them. If it's stress then maybe you need to amp up your self love and meditation routine. If diet then maybe look at your weaknesses - sweet treats? not enough veges? not enough water? then commit to healthy eating with a well balanced diet going forward. If work then meditate more and pull back on socialising or maybe have a chat with your boss or set yourself some boundaries. In my case being conscious of my iron and b vitamin intake helped me tune into re-introducing supplementation and upping my seafood. Learning to listen to your body is crucial, symptoms are the bodies way of communicating with us and if we get in-tune with that we can manage our illness with so much more ease and understanding. 

I met with my neurologist a few weeks ago and he said it must have been a virus even though I said my supplementation is making me feel so much better. He has no idea I'm on OMS as I feel he'd dismiss it, and he didn't seem interested in my low B12 and iron stores. But I'm just relieved I didn't have to take nasty steroids and that I'm feeling like myself again. 

It did make me wonder though - would this have escalated had I not known my body and started supplementing again? maybe. Can I leave my general health and vitality in the hands of my neurologist or my GP - nope, I've just lost my last shred of confidence in that. My neurologist is fantastic and I trust him with my life but only when it comes to MS, which is his job. So it was the push I needed to make an appointment with a functional medicine doctor who will address my health and wellness on a holistic level.

Life has a funny way of slapping us in the face from time to time and waking us up, but I think it's how we choose to react that's the key. I feel we can always learn from these experiences and we always grow in the process. I have a simple new mantra now that reminds me everyday to be positive and adaptable when I'm faced with setbacks...


"I choose to rise above the challenges of my day"


I'd love to know how you guys feel about this topic too. Have you guys had any hiccups in your healing? Has anyone else had iron and b12 deficiency? What are some of your triggers? I’d love to hear how you guys are going.

I have a post coming up on all of the things I like to remind myself when my journey is temporarily ebbing to help me keep it all in perspective and stay positive through the tough times. So keep an eye out!

Hang in there!!

Much love!!

Simonne x