So I suspect most people on here are familiar with the idea that vitamin D, and possibly sunlight in general, might have some link to the development of MS and maybe its progression. All a bit uncertain, but having seen the table in the OMS book that showed MS rates in different countries and their latitudes, some sort of link seems more or less certain.
I am certainly someone who has long lacked sunlight. Partly I live in the U.K., but I’m also really not a sunlight person. I’ve never done well in heat, even as a kiddo, and I’m blonde with blue eyes so I burn lickedy-split. I also spent my teens (and who am I kidding, am spending my adulthood) tucked up indoors doing generally nerdy things - books, internet, crafts. My sunlight exposure is probably well below average; I’ve never been on holiday to anywhere sunny either. It just doesn’t appeal - I hate the heat.
I’ve now been diagnosed with PPMS, and things have been moving pretty quickly. In two years I’ve gone from walking everywhere (I’ve never driven, so multiple hours a day on foot was the norm) to wobbling around ineffectively on crutches and not even always being able to make it to my closest shop which is only 5 minutes away. I’m fairly incontinent, I have foot drop, vision problems, spasms, stiffness, etc.
My mum would really like me to try a sunbed. I’m not so sure that’s a good idea, especially given that as I understand it most don’t even have the right kind of light to produce vitamin D. I’m also not willing to subject my face to anything like that, so I’ve been looking at smaller lamps. Honestly, in large part I think it would please my mum, who is struggling a bit with my diagnosis. She would really like it if we could do something. It might also help I guess, and I can see that it might feel nice.
Has anyone tried a lamp or sunbed-type device? Did it help? Does anyone know if anything along those lines is actually thought to help with MS?
I agree with Whammel completely (I often do, he’s quite sensible and knowledgeable). Most of us take (or ae advised to take), a vitamin D3 supplement. For me, it’s 4000iu (international units). It’s best to a) make sure your GP knows you are taking a high dose supplement, and b) you have your levels tested by blood test either before and after starting them, or after at least. My vitamin D level is now fairly reasonable, and not too high (too much vitamin D taken as a supplement can be toxic).
Personally I don’t believe that a subbed will give you additional vitamin D. As CC said, only sunlight can give you vitamin D through the skin.
Also as Whammel said, FES is the very best solution to foot drop. It’s a method of stimulating the peroneal nerve that runs from your knee to the foot, enabling your toes to lift when you walk.
Along with all the clever DMT’s that could be tried for MS, as the afflicted we can look after more prosaic aspects of our own health.
It’s well worth reading up not only on Vitamin D but also other levels as on its own, Vitamin D dosage isn’t the whole story. Your system, or other meds you’re taking could be affecting your ability to absorb certain vitamins, most notably D3 and B12. I take a Potassium supplement periodically as low K is one of those things that can affect take-up of other substances.
Also, while it’s not perfect (UV-A promotes tanning whilst UV-B assists the synthesis of Vitamin D in the body), I’m planning to have a couple of 6-8 minute sunbed sessions this week. Specifically this week, as I’ve just checked the weather forecast and it’s unrelenting cloud or rain all week!
Have a look at British Association of Dermatologists - Vitamin D The Association of Dermatologists explicitly state that ‘Sunbed use increases the risk of skin cancer, and is not recommended as a method for enhancing vitamin D status.’ Obviously you may have found a an alternate reference that states sunbeds can increase vitamin D.
They took bloods to check for vitamin D levels. I’ve not yet heard back, but as I say, given how much of the population is vitamin D deficient and given that I have all the risk factors it seems quite likely my levels will at least be on the low side (I’m also vegetarian and don’t eat gluten so a lot of the fortified foods are out, so dietarily speaking I’m not making up for it either).
Wow, it sounds like you’ve had a really exciting life!
I will have to ask someone about that. You said GP, am I best to go through them or my neuro physio, ortho, neuro, or MS team? I read something about it on here the other day, but people were saying they’d had to fund it privately. I’m long-term unemployed and finding the money for food is often an issue, so funding any medical care privately is more or less off the cards for me sadly. I’m seeing my orthotist tomorrow for a foot brace fitting, which I’m hoping will help.
As I’m PPMS the only thing they can use is Ocrevus. Even for that I don’t technically meet the prescription requirements, though my neurologist is trying really hard to find a way to make my case fit, just so that there’s something they can do for me, particularly since my progression has been so rapid.
My understanding is that a lot of sun beds only use (or predominantly use) UVA, whilst it’s UVB that is needed for vitamin D production. However, there are a whole range of sunlamps that use exclusively UVB, and these are the same sun beds and sunlamps that you’ll see in your dermatologist office if you’re being treated with phototherapy for psoriasis or acne. These have been shown to produce vitamin D and to do so as well or better than sunlight exposure (see LED lights safer, more effective in producing Vitamin D3 than sunlight -- ScienceDaily ). Even sites talking about how unsafe sun beds are seem to often mention that they do actually raise vitamin D levels
“Since ultraviolet (UV) B light is the most important prerequisite for the cutaneous synthesis of vitamin D, sunbeds are able to increase serum vitamin D levels, although only transiently in most cases.”
Some sunbeds are broad-spectrum and also have UVB bulbs, but since UVB doesn’t give you a tan it’s mostly the more spa-like places that have them, rather than tanning parlours. But you can buy the same ones that Drs and dermatologists use for under £200, or more like £50-100 secondhand.
As ya’ll say, I’m probably better off with a supplement. My neuro suggested I take B2, and I was already doing veggie Omegas, CoQ10, zinc and a turmeric complex and have been for years. It’s just difficult, if he can’t convince the neurology board to let me have Ocrevus then I’m sort of out of options. I’m doing physio but then I was already exercising multiple hours a day and only stopped because I literally couldn’t do it (or do it safely) anymore. I’m already on a low fat vegetarian diet, I read and learn new things and keep my brain active. But if things continue at the pace they have over the last two years, I’ll be in a wheelchair by this time next year, and I kind of just wish I could do something, ideally something other than sitting in my house munching pills lol. But as you say, I’m probably better just adding vitamin D pills to my daily pile.
Also, not that it should really matter, but I’m 31 with no job, no partner, no kids and living with my mum, and was kind of gearing up to restart my life after a decade of depression and addiction followed by a messy divorce. Then I got sick. So it kind of feels like the rug has been somewhat pulled out from under me as I’ve yet to do literally anything I want for my life.
My own fault, but still. It makes it harder to accept.
Any of those medical professionals are likely to be able to arrange a FES referral and I only mentioned GP, because that’s the route I took. It’s true that not every CCG will fund it, but the answer is always no, unless you ask.
I hope you find the brace works for you.
i have wrinkles older then you hun. 31 is young back in the day for example officers in the army were never encouraged to be married until they were in the their thirties lol.
UNLESS you are bedridden there is no reason why you cant enrol in say college courses to update your skills. Hell when i was made redundant i was older then you and went back to college and did a certificate in teaching in further education and passed level 1 and 2. I became a teacher in the college for I.T. I also ran a local drop in college for locals. then got head hunted and went to the city to run 11 learning centre satellites for local community to learn I.T. or just fun stuff. Gosh i had 54 tutors to care for.
I wasnt sick then. but prior to all that I wasnt highly educated. I started life in a typing pool. i always managed to climb up. I have cleaned toilets, scrubbed hotel rooms, cooked in Little Chef, restaurants and pubs, found i liked paperwork, and become a export clerk for an engineering company learnt export documentation through the local chamber of commerce in bristol, had a thing with learning about parts and stuff for the macinery the company sold, then eventually became a buyer lol…then redundant, and on with the new challenges.
LIFE IS A CHALLENG. You can take 2 roads the easy or the hard road. You live with your mother nowt wrong with that. BUT UNLESS your totally bedridden or not able to move a hand you can do something. You are very ariticulate and obviously have good communication skills, so start from there. the world is your oyster, ok you have MS but so do thousands out there who all lead normal lives. SO START YOUR NEW LIFE. one step at the a time. You have made the first step by posting on here, now its upto you to FIND OUT WHAT IS ACTUALLY AT THE END OF THE RAINBOW…!
A couple of points - first, vitamin D3 is generally what’s advised to raise your general vitamin D level. It’s better at doing the job than D2.
Second, rather than ask the orthotist about FES, ask your neuro physiotherapist about your local CCGs position on FES. Assuming they have a policy of funding it, the referral for FES should come from your GP.
Lastly, with regard to Crazy Chicks post, she is absolutely right, you do seem to be an excellent communicator and researcher too. Maybe you could find a course you could take. It may be that work is currently beyond your capabilities, but following a course of study is something that boosts your self esteem regardless of whether it’s for employment or not. I found that gaining a degree as a mature student (only a bit younger than you when I finished in 1995) gave me a huge sense of achievement.
It’s possible that study does not at all appeal to you, in which case, please ignore my comments.
Thanks to you both for taking the time to reply to me again!
You’re right that 31 is young, but it’s still old enough to have missed the door for some things that I think it’s reasonable to be bummed about. Like I’ve already pushed past my fertility window due to other health problems (and can’t adopt or foster due to my history of drug use), and they’ll no longer let me learn to drive which was the big thing I was hoping to do next. I’m also putting a lot of pressure on myself because I don’t realistically have the life expectancy of someone who hasn’t done the things to their body that I have. Obviously it’s not possible to predict the future, but my own GP told me they were surprised to see me still alive, and I’m very aware that I really didn’t have any right to come back from multiple of my downward spirals. It makes one very aware of lost time.
It’s cool that you’ve had such an amazing life, it sounds like you’re a really capable (and inspiring!) person I can definitely relate to having to start over!
Sadly not quite so simple. I’m doing better in my life than I ever have, but experience has taught me that trying to take the hard road tends to be more than my mental health can handle, and it doesn’t seem to take much to either push me into mania or depression, either of which can easily end fatally. A very dangerous pattern has repeated since my first mental break at age 7, and I really have to be careful about every step forward I take. I would truly love to be someone who can just jump in with both feet, but trust me, I’ve tried, and I’m not.
Thanks to you both for your kind words regarding my communication skills
I actually already have degrees, but I can’t work in the areas I’m qualified for any more (criminal and drug rehab and resettlement) both because it puts me at too much risk of backsliding and also because of my history; sounds like you can relate! I was hoping to go back to uni to do something totally different, but it actually gets somewhat complicated, because you can’t get funding to do a second undergraduate degree and it’s not so easy to just slide into a phd for something completely out of your area.
That said, I’m doing specialist volunteering using and developing my skills in book valuation and I’m currently being trained for a second volunteering role with a different organisation (they’re teaching me to use photoshop and Excel, which is fun upskilling in its own right). I‘m somewhat hampered by the fact that between the MS stuff, my other health problems, ongoing addiction care, and mental health treatment I tend to have some sort of appointment 3 or 4 days a week, and again, if you don’t drive then bussing to and from an hour long appointment a city over or wherever can be like a 5 hour process, so between that and those two volunteering roles my dance card is bordering on full. Plus I have a lot of organisational problems in terms of managing to keep my home space liveable and still eat and shower and those sorts of things. But I’m trying. I actually give myself a lot of props for how far I’ve come; when I consider that for many years my social anxiety was so bad that I wouldn’t leave one room in my home because of the chance a neighbour might hear me, I’ve come a very long way to be where I am now. I was kind of on that upswing when the MS stuff started happening. I came out of a year of intensive therapy to work through a lot of trauma from my childhood, and just as I finished that and was gearing up for my grand re-entry into society, I suddenly couldn’t walk. Yadda yadda yadda, here we are. That’s all I meant by it being somewhat of a mind… screw. I spent a year planning out the things I wanted to do when I finally had my mind back under control, and then my body crapped out on me lol. And obviously with any severe mental health issues, you’re never actually ‘fixed’; it’s going to be a very fine (and heavily medicated lol) line to walk for the rest of my life.
I’m wondering about maybe doing a course on something more artsy. I’m from a very academic background and I find it very difficult to dedicate myself to hobbies that don’t feel like they have an ultimate goal. Like, I love reading, but I can’t bring myself to read fiction because it feels like a waste of time. I’m crap at drawing and painting and have always wished I weren’t, but again it never seemed like a very productive thing to spend time learning, so I’m wondering if now is the time for that. A lot of my problems in the past have been from burning myself out trying to do and be way more than I could handle, so maybe now is the time to tackle that.
Thank you! I’ve got an appointment to see my GP at a clinic next week so I’ll ask him about that then. My D-level bloods should be back by then too. As I understand it from reading around on this site, I should be looking to add K as well right? Or only if I’m taking a megadose?
Cheers, good suggestion! My ortho wasn’t aware of it, so I’ll try firing off an email to the physio this evening and see if she knows what the score is on the funding
Thanks again to you both for taking time out of your lives to help me, it’s very kind of you
Rainbow, omg you are a writer. Yes it’s long, but you are as both CC and I have said, an excellent communicator.
Clearly, you’ve battled through a lot of cr@p in life. To already have undergraduate degrees does, as you say, mean you can kiss goodbye to any (pathetic these days anyway) funding for higher education.
A friend of mine started an OU degree some years ago; via English language, creative writing and poetry, then art history; she’s ended up as a painter. I really love
her abstract work. She now has a studio in her old garage, paints, exhibits, sells work (probably not enough to keep a hamster, let alone a kitten alive - certainly not as much as she deserves). She loves her new life. I think it’s a valuable one.
In my opinion, the arts, in whatever form most suits, are worthwhile fields of study. Even if it’s just as my friend Anthony (aka Albrecht Durer from this forum) did, working with a local art teacher and painting just as a hobby. In my opinion he was (maybe not quite of the calibre of his namesake), still an artist worthy of the title. (Sadly he died a year ago.)
I’ve never been any kind of artist (in previous life maybe a bit of a plssartist!) nor have I ever
thought I have the grounds to comment on art. But perhaps as I get older I’m less bothered with what’s ‘right’ and more honest about what I think.
Why not try to exercise a creative muscle? As you say, you are young. You’ve managed some serious achievements despite your early life, addiction and mental health issues. Why not aim for a creative future, in whatever guise that takes. I’m sure you have determination, guts and bravery enough to achieve whatever you set your mind to.
are that brings back memories. I have my MOUS in microsoft office and used to teach Excel, Access, word, and paint. (more fun then photoshop lol).
I still use Excel to keep my money budgets.
I used to do a cooking course for clients in GDAS. Gloucestershire Drug and Alcohol services. 10 weeks cooking on a budget. Every week they turned up to learn something new. I would chat to them as well. I am a trained youth leader and have done basic councelling. My students were a mix, young, middle age, some had been married, lost jobs etc.
My first husband was an alcoholic. I do have empathy with people who are addicted through circumstances in their lives.
You do seem to be fully active, i always say there is no point in looking back at what you cant do but find things you can. I used to drive everywhere for work, I cant drive now, MS thanks it takes so much.
when i say take the hard road, you dont want to take that road again, and your aware of that now. NOW is what we are worried about not what you did. All you can do is learn from that.
Who would have thought I for example who had never used a computer in my life would suddenly learn how to use the latest Windows, learn Microsoft quickly in a week pass all the exams ECDL, and Advance and MOUS and end up TEACHING IT LOL. Craft can be learning the inside out of a computer doesnt have to be making celebration cards or painting pictures gosh no thanks i would be bored out of my mind lol. I even did my NVQ assessor so i could teach business Admin. I have no idea where all this came from i woke up and decided to do it. Was it my dad who was computer savvy guiding me who knows.
Your very intelligent and have obviousl had a chequred life, why dont you write about it? Write a book, you are the sort of person who has the skills to do that and it can be written in such a way it helps others. Or would that trigger sounds like you have PTSD.
I think you could teach. They do need online teachers for courses perhaps its something you can think about?
Even now i find myself helping people with I.T. lol. I swap it for teaching me how to use my stupid phone. My daughter insisted I learnt to use a smart phone its beyond me lol. Give me my little clam shell Alcatel anyday. I hate SMART PHONES and IPADS etc, i have mans hands and they are fiddly so i would rather use my laptops for things, and alcatel phone to text, i dont need all the distractions a smart phone gives me lol. SCRATCHES HEAD NOW WHERE HAS MY STUPID PHOTO GONE LOL.