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Hi there,

I have recently been diagnosed with moderate RRMS. I am a 26 yr old female with 1 child.

Current Symptoms-Reduced feeling/numbness in legs and feet, horrible heaviness in head, blurry vision, trouble with balance and thinking, on and off tightness in left of face. ...and now my hair is falling out ..small thing and not MS related i know..but seriously? GP said the hair loss is from traumas such as birth and now this?

First symptom was about 1 month after birth of my 4 month old. Numbing in right arm and thumb and index finger, then started on my left hip and progressed to groin (was hard to void urine for a few days) and down legs etc. MRI showed mutliple lesions in brain and a couple on my spine.

I have been to see a neurologist and have been given a list of medications to look at and decide which treatment I would like to commence. An infusion called 'Tysabri' or two tablets, 'Gilenya or Tecfidera'. All of which i cannot breatfeed with and all have different potential risks. Tysabri with a risk of PML :/

I have stopped eating meat since diagnosis, ceased dairy (some egg occasionally), I'm taking vitamin supplements, trying to get more sun ( Vitamin D levels came back fine though) and juicing in the mornings!

I have no idea about what to do, how to choose or if i should wait and continue to breastfeed my baby until she's a bit older. Breastfeeding has always been important to me. I understand that she has had the best start already with breastfeeding for almost 5 months however still stressing about everything..

Any advice on what medication I should choose would be amazing as most of this has gone above my head and im trying to grasp everything. These forums have already given me hope and some understanding. :) (Ive also posted this in another forum on here)

Thanks

From, one scared mummy
Hi JJ

There is a lot of information on this site to show that breastfeeding is beneficial against further relapses, and good for your baby. Why not ask for Copaxone (Glatiramer)? Professor Jelinek has said this about it:
Breastfeeding and Copaxone
The drug's pharmacology means that it does not get into breast milk. In fact, it is recognised by the immune cells at the site of injection, and then rapidly broken down, so it doesn't even get into the bloodstream in appreciable amounts. Breastfeeding also confers some protection against relapses so it is worth continuing with it as long as possible.
http://www.overcomingmultiplesclerosis. ... latiramer/

There are also some relevant FAQs in the Family section about reducing the MS risk for your baby.
http://www.overcomingmultiplesclerosis. ... rces/FAQs/
Wendy

Diagnosis Dec 1998 OMS Feb 2010 Retreat Feb 2012
You said your vitD is fine, what is the level?
Dx 1992 OMS 25-2-09
Thank you for your reply Korimako, I will definitely ask the doctor/nurse about it!!

Kashu- I couldnt quite see so ill double check but i think 124. The nurse said it was one of the best she'd seen. but ive noticed on here it should be up around 250?
Ive also started taking 'Ostelin- Vit D3 500IU (cholecalciferol 12.5mcg)and calcium(as carbonate)600mg'. Not sure it it's the right one to take?
Yes there is lots of info on how important vit D is.

I keep mine around 220 nmol/L and personally have to take 10,000IU per day + boosters and regular blood tests to keep it there.

You will find medical professionals have a diiferent view of what a good level is to what we know is best for us.
Dx 1992 OMS 25-2-09
Unfortunately the decision is up to you, I fucnt breast feed my boys I was young when I has them and just did feel confident enough to try but I wish I had and given them a better start in life as with the oms approach on diet it's probably the best for your baby. But with that said you have to do what is best for you both and if your really struggling then meds might help they didn't really help me I went on to copaxone but it didn't sute me and feel better since stopping but maybe it help stabilise me while the diet kicked in. Wit that said I'm still not going to say im recovered but I have a decent quality of life I still have good days bad day and symptoms but have learnt to relax more and stick to the diet. I hope you get sorted and your able to enjoy your baby.
Hi JJ,
I'm posting about the hair loss part. About six months after diagnosis (Dx Jan 2014), I started to lose my hair (June 2014). My hair was also really dry. Really alarming! I spent some time getting myself calmed down about it (I tried to tell myself, "it is just hair!") Difficult to do and helpful. I did a couple of things diet wise: I upped my flaxseed oil intake to the upper end of the range (closer to 50 - 60 ml). I am eating avocado (1/8 to 1/4 of one each day) for the fat content. I take vitamin C with zinc as I think zinc is needed for hair. I make sure to eat things with protein - fish a couple of times a week, quinoa and sometimes I mix some vegan rice protein in with a smoothie. I also eat a couple of Brazil nuts a day for the selenium. I have no idea if any of these components had a hand in stopping the hair fall and my hair has stopped falling out abnormally (Dec 2014). My hair did get pretty thin; I think I lost about 50% of it. So hard to be patient and I will be patient as my hair grows back.

Ready for winter to be over as my head gets cold when I go outside. I have a new appreciation for the men I know who are losing their hair! Wow, it is tough and uncomfortable. ;) Hang in there!
Hi JJ - I have also recently had a baby (she is almost 6 months old) though I was diagnosed about 3.5 years ago and have been on tysabri during some of this time. My hair also became really fine after diagnosis but it seems better now.

I am still breast feeding but also taking copaxone, i understand it's the safest option during this time. Once my baby is weaned (which I guess will be in the next month or 2) i will go back on tecfidera. The medication is such a personal choice as I've mentioned in a recent post but I thought (and my neurologist recommended) copaxone as a good option during the breast feeding.

Anyway wishing you all the best and of course, feel free to pm me if you'd like some more info on my experience. Everyone is different, as is the choice around diet, exercise and medication but I am happy to share my experiences with you.
Thanks so much for your replies, it's been a while since being on here.

I decided on Tecfidera in the end. And now into my third week. Luckily no side effects. Decided to stop breast feeding in the end . Bub is doing fine but boy do I miss it!

Still getting strong symptoms from this relapse. Hopefully will reduce soon. Hair is still falling out in large quantities but no real noticeable thinning spots so far.

Cat- I will take your advice and add a few more things to my diet/ sups :) thanks so much


Clementine- thank you for your post. I hope you went ok with the weaning process if you have stopped breast feeding now. It's a tuff gig emotionally and physically (sore boobs- ouch!) would love to get in touch to talk more soon.


Jane
Protein is in all whole foods, just some foods are more dense then others.
Hope taking control of your choices and direction helps you. There is a faq area covering parents and children.
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