Hi All, it’s been a few months but here’s update, the last time I was on here was to let you all know that my MRI scans were all clear, and I was waiting for an appointment to see a rheumatologist as my doc thought id maybe got fibromyalgia and not MS, so I’ve now seen the rhuemy and she done lots of blood test the same ones, vitmains ,thyroid, calcium etc. And I have very low vit D levels 23nmo/l in her letter to me she put that I was bordering on absolute deficiency and that she was writing to my doctor for me to take Desunin 800 vit D3 tablets and that I am suppose to increase the dose slowly up to 5 a night. I went to see my doc as I was abit concerned as I was already taking calcium d3 anyway and can’t understand how my levels cud be low and why had it not shown up before when the neurologist done the same bloods in Feb and back then I wasn’t taking supplements either. My doc had no answers for me! My doctor had also started me on Amitriptyline to help with weird pains im getting, im at present taking 50mg a night, they help abit, but either they don’t stop the electric shock pains or im getting them as a side affect from the tabs. I asked my doc if I shud keep my September follow up appointment with the Neuro as if symptoms are all down to vit deficientcy an fibro then surely I wudnt need to see him but she said I must keep appointment just incase all syptoms have not gone away by then. Ive spoken to my cousin who has MS and she said it’s very common to have vit D deficientcy with ms but I’ve read it’s also common with lots of other things too like crohns which I have and fibro too., I don’t think my doctor knows if it’s just vit D deficiency either or wether it’s linked to my crohns or not. Is my 50mg dose of amitriptyline what people take for ms? As I’ve read some of the meds are same for fibro an ms, anyone else on Desunin 800 aswell? Thanks TTracie
The test results are rather strange. Lab error is the likeliest explanation, but there’s no way of knowing which lab unless you have another test done. Maybe ask your GP? The calcium pills you were taking already probably only have a very low dose of vit d in them btw (400iu may be the RDA, but the RDA is woefully out of date). I don’t know Desunin, but if your levels are so low, why not give you the high dose vit d injections to get you started? Also, you can usually get vit d capsules of 1-10,000iu on the Internet for very much less than the price of a prescription. If you pay for prescriptions, then have a look at Healthy Origins on amazon (and elsewhere) - a year’s worth of 5,000iu is about £10-£12. Shooting pains are the kind of thing that a lot of us get and amitriptyline is commonly prescribed for (different people are on different doses). They could be a side effect instead I guess - the way to tell is to come off the pills (slowly) and see what happens. Alternatively you could increase the dose (slowly) and see what happens; do the shooting pains reduce? As far as why you’re vit d deficient (if you are), the majority of the UK population is apparently! We just don’t get enough sun 
It’s true that people with MS are more likely to be deficient, but we are more likely to be B12 deficient, have migraine, have epilepsy, have Raynauds, have Crohn’s, have IBS, and loads of other stuff, however there are billions of people who have these conditions but who don’t have MS. Also, as you already mentioned, vit d is often low with Crohn’s - in fact it seems to be low generally in autoimmune conditions. All of this means that “Why?” is an impossible question. Probably best just to deal with it and not try to work it out. Karen x
Hi Karen, thanks my doctor said that she doesn’t know why low vit D didn’t show up before but my syptoms do fit with low vit D, if they don’t go up with Desunin then I will have to have injections. Im not happy feel exhausted and disappointed, I feel like im being used as a guinea pig, ive got to have ultrasound next Tuesday on liver, kidneys, gallbladder now as I have a hard painful area just below my ribs on rightside, ive read up that low vit D can cause fatty liver and cause I have crohns it means that I’ve not been absorbing vit D, im annoyed as I’ve had ms type syptoms for a year now and Ive had MRIs and seen rhuematologist too and the months have been going by when it cud of been all down to vit D deficientcy linked to crohns! My crohns consultant shud of told me about this when I was diagnosed with crohns and maybe I wud be ok now. Thanks this and told mw