So, one Monday just gone, I had an appointment with an epilepsy nurse. We went over my medication, and she noticed something I'm kind of missing 😕 I'm folate deficient, as well as vitD deficient. The letter from neuros had said this, and my GPs have only prescribed me vitD. That nurse couldn't prescribe me any, as she's not a nurse practitioner/prescriber, so I've had to call through to my GPs this morning. The receptionist was a bit helpful, saying I need to speak to a GP, but there's no appointments left for today. I'm going to have to log on to their site tomorrow morning and get myself booked in, rather than the receptionist telling a GP in their breaks 😕
Looked up folate (comes from folic acid) on Google, and it helps with some MS symptoms and reduces the amount of relapses! It may also help protect people from actually developing MS! 😳 wish that is well known, and acted upon, just to stop other people from getting diagnosed with it 🙏
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If you have not had your Vit B12 tested recently you should get this done before you take any folate supplements. This is because taking folate can mask the symptoms/ damage from a B12 deficiency and allow them to progress further - sometimes to a point where they can end up as irreversible neurological damage. In many people B12 and folate deficiencies go hand in hand. There are also common OTC meds which affect folate absorption, especially PPIs and some NSAIDs. also, B12 deficiency is becoming a lot more common these days because of the number of people adopting vegetarian and vegan diets without having enough knowledge about how to compensate for the removal of entire food groups from their diets.
I don't know the source you looked up which claimed that folate can prevent MS, but any connection is pretty tenuous and undocumented - a bit like claiming that low Vit D causes MS - which is not the case. Also, in more than 10 years of having and researching MS, I have not come across anything which provided evidence that folate reduces relapse rates.
Here's a fairly recent article which briefly looks at several vitamins in relation to MS.
I don't think I'm b12 deficient, otherwise it would have flagged. I'm not vegetarian/vegan, but I tend to only eat one meal a day. That usually has meat in it, apart from when we do soups 🤔
It's all just hopes and prayers, really. A full cure, without having to pay for treatment in Mexico, or similar, might be coming in the next 50 years, but not all of us can really wait that long 😢 I might be able to, given that I'm 30, but older people can't really wait that long 😢
It's still worth asking whether it's been checked recently or not. As you've said you're booking to catch up with your GP anyway to discuss taking something that doesn't actually require a prescription, it won't hurt to ask - better safe that sorry. I'm curious why you've said that your GP has prescribed your Vit D when supplementation for MS doesn't require a prescription for that either - seeking advice is usually a sound idea but why pay for scripts when OTC is bound to be cheaper?
The article you have linked does refer to B12 and folate but is actually looking at homocysteine levels, and as they are influenced to some extent by B12 and folate I'm guessing that's probably where you've got the idea that folate levels affect MS. Here is the conclusion of that article - and it's not referencing folate.
"Conclusion - MS patients tend to have elevated Hcy blood levels compared to healthy controls. Hcy may contribute to the pathogenesis of the disease."
Here's another article on the same topic but in full and it also found higher homocysteine levels in PwMS, but little difference between PwMS and PwoMS as far as B12 and folate were concerned.
"CONCLUSION - In summary, we extend previous observations of Hcy, Vitamin B12, and folate serum levels in patients with MS. Higher circulating Hcy levels was noted in MS patients compared with controls, while no significant differences of Vitamin B12 and folate were found in this updated meta-analysis. Further subgroup analysis indicated statistically significant difference of Hcy levels between RRMS patients and controls, but not in SPMS or PPMS groups. Our study may be of main importance to elucidate the pathogenesis of MS and provide valuable information for early MS prevention. Substantial effort of functional studies is needed to explore the effects of Hcy on MS at a molecular level."
I have been taking folic acid for...20ish or more years??? You can get OTC. I was diagnosed with MS 10 years ago. So taking it didn't keep MS away from me!
I just really want my GPs to tell me if I need to take supplements 🫣 just so I'm not overdosing on it. I do try to have more fruit/veg, but it doesn't help when I don't really have an appetite until dinner/tea time (evening meal). It doesn’t help that my stomach is full for practically the entire day after just 1 meal, and when I do try to eat more, I tend to throw up 😢 my husband likes to make homemade meals in the evening, especially veg soup, but even then I get full 😢
I don't eat well, either. My GP picked up on it from a blood test. Next time you have an appointment, tell them you'd like to see if your level is low. If so, you will be told what to get.
I'll have a look into this 😊 see if I can get it done with the NHS 🤔 I know my nephew has had a genetic test that showed his body couldn't properly get oxygen from the air when he was born. He had to have a trachy put in while in NICU to put oxygen only directly into his lungs. Thankfully, he's been able to have the trachy removed, and he's slowly learning how to speak. His twin brother doesn't have any issues, and he's learned to speak somewhat normally 😅 the condition that had one of them needing a trachy is ABC3A (if I remember correctly 🤔) and required genetic testing.
Because of heath issues I couldn't get out for the test just also had the deficiency so just bou ght the drops for not much and changed - felt better so keeping it up.
Here in the States, Amazon had the best price. Every day, I drank 10 oz diluted 100% grape juice with all the supplements I can get as liquids in it - I have too many pills to swallow, so this eases my day!
i bet you're right about the deficiencies in vitamins and minerals that probably help prevent the development of ms. while i'm annoyed they only sent you vit d and you had to chase up the folate, i'm glad you have a nurse capable of noticing and helping you.
It's what nurses have to do: spot Drs' mistakes 🙄 thank God she caught it just from reading my notes and letters sent to my GPs. It's the 1st time I saw her too!
It's brilliant when you can hold on tight! My MS nurse fought to get me my flu and covid vax's last year before I tried kesimpta. She'd sent an Angry Nurse™️ email to my GPs telling them I needed it done sooner than the nationwide roll-out 🤣 she's brilliant 👏
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