This Is MS Multiple Sclerosis Knowledge & Support Community

Hi

Sorry I have been so absent. I keep meaning to come on and say hi. I seem t be having a continual downward trend with the MS this year, starting with painful hypersensitivity that began on New Years day and lasted 6 weeks to today's arrival of optic neuritis. My legs have gotten really bad - spasms, weakness and trouble picking up my feet. I use the chair quite a bit now. I also hvae weakness in my arm for the first time in ages and the mandatory fatigue. Things have been pretty bad lately.

Anyways, I didn't come on to moan. I was hoping for some advice. I am takin no drugs as I am breastfeeding my beautiful son! My neuro is something of a twat (understatement) and refuses to prescribe me anything unless I stop breastfeeding, even when presented with evidence and the support of a trained pharmacist that the drugs are safe. Are there any supplements etc that can help? Or any other great advice?

I thought remitting relapsing MS was supposed to have remissions but I haven't really had one in ages.

Hope you're all well

aw! of *course* there will be supplements that can help! that little one is doing his job and building himself up, but it's unfortunately taking its toll on you. are you not currently on any breastfeeding mom nutritional supplements? they would be barely adequate for a healthy mom, but you are not there - and i've never heard of a pre or postnatal supplement designed for moms with marginal nutritional status such as is common in ms patients. sorry to hear your neuro is a twat (that made me smile) but i think he is quite right not to want to inadvertently deliver the drugs to your child via your milk. nonetheless, you need some powerful stuff to help you deal, but i suspect nutrients not drugs are in order. in order to confirm, is it possible for you to get some bloodwork done?

They don't do that kind of bloodwork in the UK Jimmylegs. I could try my GP but it's unlikely tbh I am a fool and have not even been taking breastfeeding mum supplements. I took iron (big blood loss with delivery) for a while and vit d but keep forgetting now. What supplements / diet changes would you recommend to an unknown? I eat plenty of fresh fruit & veg.

remember this conversation from 2009?

http://www.thisisms.com/forum/general-d ... tml#p70235
"Jimmy - I was taking zinc & d3 but I stopped taking everything I was on when I got pregnant - at my Drs advice. I now take a prenatal vitamin & the prescribed folic acid only."

let me propose the idea that the zinc was what helped you get pregnant and carry to term in the first place, after all the sad losses you and adam suffered through before. also curious is your diet still like this?

"I am not sure I am getting the most balanced diet at the moment but I am doing the best I can! I seem to just crave stodgy carbs and not much else. Am off chocolate etc but eating toast at a ridiculous rate! Not much fruit and veg so really ought to try and rectify that."

toast (gluten) would deplete zinc levels quite handily by itself, never mind the breastfeeding in the mix.

also fyi, research (http://jn.nutrition.org/content/131/2/262.short) suggests that pure breastfeeding to age 6 months is harder on the mother, but better for the baby.

check this study out too:

Zinc levels in maternal milk: the influence of nutritional status with respect to zinc during the third trimester of pregnancy
http://www.nature.com/?file=/ejcn/journ ... 0393a.html
During pregnancy all subjects showed zinc intakes lower than those recommended... 56% of L (lower intake) subjects and 28.6% of H (higher intake) subjects showed serum zinc levels of less than 12.2 µmol/L. 8% of L subjects and no H subjects showed less than 11.5 µmol/L of zinc in maternal milk.
Conclusions: The diet conditions maternal serum zinc levels during pregnancy and those of milk during lactation. Though all subjects showed intakes clearly below those recommended, low levels in serum or milk were much rarer. These results support the idea that there is a need to reset the limits of normality for serum and milk zinc levels. Further work in this area may confirm that the present recommended intakes of zinc be modified.

i would strongly suggest nutritional bloodwork and a rework of your diet and supplement regimen, to get you into optimal condition for operation mom

fyi over the years i've found i always need to educate health care professionals on this stuff. my doctors, other peoples' doctors, people running courses in health care, my naturopath, other naturopaths, etc etc etc. i cringe when new members announce a fresh dx and immediately being put on d3 with no mineral balancing. that is a recipe for making everything worse. at least the d3 message is making it out there, but as yet it doesn't look like medical practise has a real handle on all the details. luckily for us it's all available on the research side of things

i'd be very interested in seeing a 3 day food and liquid diary if you like, so that i can look for foods that may be affecting your nutritional status and leading to your symptoms. as usual, i strongly suspect roles for zinc and magnesium, for starters.

it's been a few years since we had a real chat on this stuff mrs - if you like, you could read the first post on the first page of my regimen thread. i've updated it really recently with the current evolution on my thinking pertaining to ms and nutrition.

sorry i didn't see your first reply til after i posted the above.

so definitely i should think a powerful multivitamin, plus some extra zinc and magnesium would be needed for you. and of course remember to take your vit d3. when you take zinc your d3 absorption will be better (mine tripled)

see if you can find magnesium glycinate for optimal absorption. as for zinc, see if you can find 50mg zinc citrate, blended with 2mg copper. or as close as you can get to that. i'll get you some info on a multi when i have a little more time.

also the more detail you can give me on your current diet the better - as mentioned above a 3 day diet diary would be awesome. you could pm me if you don't feel like posting for all to see. i can't believe you can't get nutritional blood testing done in the uk. that goes against all logic to me!
i scouted around and found this: http://www.medichecks.com/index.cfm?s=2&d=19&thc=13
but it looks kind of half-assed (only urinary excretion for zinc??), not to mention SUPER expensive!! that really sucks.

well here's an option for you then, regarding zinc at least.

pick up some zinc sulfate http://www.healthaid.co.uk/shopexd.aspx?id=68

smash up 5 x 200mg pills into powder, and dissolve thoroughly in 1 litre of purified water.

then follow the rest of this protocol for the 'zinc taste test' and see which grade response you get: 1, 2, 3 or 4.
The Zinc Taste Test
http://www.msrc.co.uk/index.cfm/fuseact ... pageid/653
excerpt:
"The test solution is zinc sulphate in purified water, at a concentration of 1 gram/litre. Once prepared the solution should be stored in a refrigerator and discarded after six months. The solution should be removed from storage and left at room temperature for about two hours before carrying out the test.
The test is based on the knowledge that the functions of taste and smell are dependent upon there being sufficient zinc available in the body. Thus, if zinc is deficient then taste function will be diminished. This principle is utilised in the taste test by offering a standard test solution of zinc sulphate for tasting. The response is then compared with a series of defined standards and the zinc status thus determined."

Omega 3 fish oils - lots of it. perhaps some Evening Primrose too.

I will pm you a food diary Jimmylegs, thanks v much! Wow - that post was a long time ago - and another baby that didn't make it! I think my diet is pretty good - I am doing weightwachers so plenty of lean meats and fresh fruit and veg. I know I eat too much evil aspartame tho.

thanks mrs, i'll watch for the pm. re that old convo, sorry i didn't pay careful enough attention to dates glad you've got reu!!

Don't worry hun. I'm ok about it. Reu is amazing. I think I got the baby I was meant to have. He is Mr laid back, hilarious and so beautiful! Prob won't pm today. Alone with Reu til late.

ok good glad you got such a sweet little man! i'll keep an eye out for the pm, whenever you have some time for it. take care!