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vitamin d??! newly diagnosed

Hi, Ive just come back from my 2nd visit to neurologist, he first diagnosed me as having clinically isolated syndrome but has now decided because of the amount of numbness/tingling im getting and the headaches and fatigue that it is infact ms. Hes prescribed me nothing, gp has prescribed gabapentin and codeine but the neurologist has advised taking vitamin d, im just wondering if anyone else has been through this and if it makes any difference? Thanks xx

Hello and welcome :slight_smile:

I’m afraid there isn’t really anything the neuro can prescribe for your MS until you have had at least two relapses in a two year period, at which point you might be eligible for disease modifying drugs :frowning: The reason he’s recommended vitamin D is that there is growing evidence that it can help to reduce the effects of MS and perhaps even reduce the number of relapses that we have. It’s not a cure and you probably won’t notice any difference (unless you are vitamin D deficient at the moment), but it may help in the long term. If your neuro hasn’t told you how much to take, most are recommending 2,000 to 5,000iu a day. It is usually cheapest on-line, but you should shop about. (At lot of us on here buy Healthy Origins 5,000iu capsules from amazon.)

I’m wondering what you’re taking the codeine for? It’s not normally helpful with neuropathic symptoms although it can help a bit with MS muscular problems. If it’s for either of those things, there are better meds. If you are taking it for your headaches, again I would suggest that there are better alternatives, partially because codeine is addictive, but also because it can cause constipation. Maybe talk to your MS nurse if you have one about better options? I’m afraid even supportive GPs sometimes know very little about MS :frowning:

If you haven’t already been told, you need to tell the DVLA about your diagnosis (they normally put people with MS on a three year renewable (for free) licence so they can keep an eye on how well we’re still driving) and then your car insurance company, for their information only - they cannot change your premium. It’s also a good idea to check any paperwork you have that might have a critical illness clause, e.g. your mortgage - MS is a payable condition.

Finally, dealing with an MS diagnosis is hard, even when expected, so try and go easy on yourself: the emotional rollercoaster will gradually get easier!

Karen x

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Thanks karen! My gp has been an arse to say the least haha they were completely useless at referring me even though I just knew something was wrong, its been going on about a year and only just getting seen now! Ive been prescribed 1000 iu of vitamin d but I guess we will just have to see if it makes an difference. Gp gave me codeine because its helped with pain ive hhad in the past and I can tolerate it but to be honest I dont think they have a clue. My neuro is great though, hes sending me for another mri to see if theres any new lesions. Think im just struggling abit at the momentand needed to vent haha, and right now im starting with the famous pain in my head and numb face!

jello jemima, i hope you have an good neurologist, if he only prescribed you vitamin d -https://pharmacyreviews.md/vita-cal-mag-with-zinc-and-vitamin-d the only reason i see here its an light form of headache maybe, or he just want to see some more result then he will decide on the meds you need!

Tindiland. The post is from 2013 so I hope the poster has had treatment since then! :slight_smile:

When I was first diagnosed 4 years ago by my neuro, who apparently is highly regarded in the field of MS, he like your neuro only prescribed D3.

It is only now 4 years later I’m being prescribed other meds such as, Gabapentine, Baclofen and Amantadine.

It’s as my symptoms have increased that a decision to try things has slowly been advised.

I’m with Poppy, it will be much better if we posted new threads, trawling through posts this old is a nightmare!!! Tracey

Hi, so I don’t know if anyone can help me, but I’ve been having odd muscles aches and things for about 7 weeks now, it started with my right hand going numb when I woke up and then it would go numb during the day well my fingers would. Then I’d get tingling in the ends of my fingers. And now I get this dull ache pain in my thighs, it comes and goes after a few minutes and doesn’t always return. My shins hurt, my arms hurt. My neck and back ache. I have dry eyes. A few weeks back I got a shooting pain in my jaw, and my gums are sometimes swollen also. If you poke the tops of my arms I’m in a lot of pain and I have had dizziness on and off for the full seven weeks, it was really bad in week one and now I get it every now and again. Am I having ms symptoms as I’m struggling and I’m very scared.

Hi Jessyka

See the messages above from Poppy and Tracey.

It’s a much better idea to start a new thread of your own rather than join an old one, even one that other people have been adding to recently. Your post doesn’t really have much connection to the thread title. Apart from the newly diagnosed bit.

It does sound like you need your own thread. Just hit the New Thread button, give it a relevant title and post your thoughts and questions.

Sue

Hi

Vitamin D apparently helps in the regeneration of myelin, the stripping of which from nerves causes MS. We get it from sunlight in limited doses and hence it was found that the further you live from the equator the higher the incidence of MS.

My consultant prescribed a vitamin D supplement for me. Have been taking for over 5 months now with no notably benefits which I assumed would now be apparent.

Regards

Read post number 2 above from June 2013.

Yes got that but as research has shown Vitamin D may help in regeneration of myelin. However that is not a guarantee of a cure. Again my consultant recommended I take it and I was prescribed it by my GP. You do not have to buy it OTC.

Regards

Hi,

https://tirereviews.co/ I am new here. i find this forum interesting and nice.

I know that Vitamin-D is very useful and good for our body. When my baby was small I used to give it to here almost everyday as she was so pale and yellow. I use vitamins daily, especially on cold days to maintain my immune system healthy.

hi anow the people on here are interesting and nice!! she said modestly.

Hi anow

Yes, the people on here are interesting and nice. Carole is one of the nicest. Maybe not the most modest, but nice anyway!

But, can I just say, the comment you left halfway up this page about giving your baby Vitamin D everyday because she was: ‘so pale and yellow’, is just wrong. You need to get your vitamin D levels checked if you are taking it as a supplement. And that (I believe) goes double for your babies. It is possible to overdose on vitamin D.

You are very welcome to the forum.

Sue

Hey, I’m in same place right now bar the vitamin D.

6 months is my next appointment. Confused to say the least. I’ve been advised to look on the medical mediums page.

Has the gabapentin helped with the tingling? It’s driving me mad Hope this helps.

Yes completely agree with other comments re the usefulness of this forum. It is brilliant for sharing info but we must remember very few on here are medical specialists. Take the Vitamin D argument again. There is scant research as to how Vitamin D helps to counteract MS but it is thought it aids in the regeneration of myelin sheath lack of which on our nerve fibres causes MS. Natural levels of this vitamin in our systems is maintained through contact with sunlight. High levels of MS have been found in populations in the Northern hemisphere where there are low levels of sunlight. Hence the reason MS sufferers are prescibed it alongside other medication. You would need to be taking high levels of this vitamin to do damage but again like everything it should not be taken unless needed. Increased exposure to sunlight of course gives many of us a lovely tan. This is due to skin pigmentation and has no link whatsover with levels of Vitamin D in our systems. So in conclusion other contributors are correct in saying this forum is only for discussion whilst medical advice is best left to the professionals.