Vitamin D3 deficiency and HMS

[Sue New]

Hello again

Another thing the Doctor I saw at Stanmore mentioned when I saw her on Monday was the fact that a lot of my symptoms may be caused by a deficiency of Vitamin D. She has taken blood tests to check her theory, but I just wondered if anyone else has been told they may have a vitamin D deficiency? Apparently, this can cause joint pain and osteomalacia, amongst other things

Take care all

Sue.

[nonyanomemory]

I don't know if this is relevant or not but many many years ago now when I was about 12 years old. I was being prodded and examined by a consultant who asked if all his trainees could come and see a classic case of rickets. I was left with this diagnosis for quite some time. My mother was left embarrassed feeling that she must have been depriving meof basic nutrients etc. Despite the fact that we pretty much had the healthiest diet imaginable- free range chickens, fresh vegetables from the garden etc etc..... I remember telling Professor Grahame some 12 years or so ago and he wasn't in the slightest bit surprised. Now I am not saying that this good doctor is wrong but it wasn't true in my case, if she is right then she deserves a medal if it helps you Sue. These days I just am pleased if someone medical seems genuinely interested. Keep us posted.

nonya

[Guest]

Not me this time, but my Marfans buddy was told he had a Vitamin D deficiency years ago so I wonder if it is a relation (To the HDCT not him )

Talking of him and diagnosis Nonya he too was told he had rickets before the Mfs

[Sue New]

Dear Nonya & Az,

Thanks for the info about Rickets often being misdiagnosed in people with HMS/EDS - that is very interesting . I hope the Doctor was able to get some interesting readings from the plethora of blood tests she ordered - at least then the mammoth bruise that is still very visible on my arm will not have been in vain

Take care all,

Sue.

[nonyanomemory]

Hi Sue, good luck with the results - just to say that this was in my case don't know about the often bit. nonya

[LianneS]

Vitamin deficiencies can cause so many problems which is why dr's tend to think of that as an alternative.When I was very lethargic, the dr suggested I needed more vitamins and to take a supplement, my dad though is one of those who say if you have to take supplements then your diet is not sufficient (ok that is obvious but still)so I didnt take any (as I have always had a very ggod balanced diet). I was tested a while back for vitamin deficiencies and I had none...

I now know the lethargy is to do with part dairy intolerance and part HMS!!
But it is worth peeps getting checked out for deficiencies... With some their are obvious signs in your body (ie white spot on your nails)

Lianne

[Guest]

I have a vitamin D and calcium deficiency but when I was persribed tablets I had an allergic reaction so there is nothing much I can do about it. I guess it doesn't help that Ihave IBS and am sensative to dairy products.

[Guest]

I have'nt been on the boards for ages.I moved to Ireland & have been settling in.It takes a while to get sorted with health care etc..


Anyway my G sent me for a bone scan(dexa) & I have osteoporosis in
my spine & osteopenia(pre-osteoporosis) in hips.

Thankfully its been detected early & it can be treated.

I wanted to know has anyone else had a bone scan & how the results were??
Thanks

[anna]

Hiya, hope you're doing well. I have the beginnings, too. I was diagnosed as borderline around your age, too. I'm taking some gunge or other, too, so hope that'll keep things stable. It's in the new gen up from me, too, so I guess it's genetic. Good luck

[libby]

as far as i've been able to learn, people who have HMS are in danger of developing it at a much earlier age than usual - it might start in our thirties.
thanks so much for writing about this, though -- because i've been wondering about it, too, but i didn't realise anything could be done to slow it down.
libby

[sillyoldbear]

hi im 21 and my pain clinic doctor suggested that i have the start of it in my upper spine. sorry that doesnt really help but yes we hms'ers are more likely to develop early onset osteoporosis and osteoarthritis

take care

simone

[Sue New]

Hi Shiv,

I was diagnosed with Osteopenia last year after having the Dexa Bone Density scan (you may have noticed that there is another similar thread to this in the Diagnosis & Doctors section). My scan showed it was worse in my Spine than in my Hip. I take daily Calcium Supplements to help limit my fracture risk and strengthen the bones. I think my problem is partly due to my EDS and partly due to the medication I was put on to induce menopause to shrink my swollen womb down before my hysterectomy. I was on a course of monthly injections through the stomach called Zoladex which has a known side effect of thinning bones. I was on this therapy for 12 months when the safe limit is really only 6 months. So with me it is 50:50 why I got it so early (aged 35).

I am due for a follow up scan to see how things are going and my Spine Surgeon thinks that this may be causing some of the problems I have been having with my neck & back.

As I mentione din the other thread, it was Dr H at UCLH who originally arranged my Bone Scan as he said in his report that Osteopenia can be a secondary problem for people with HMS/EDS.

Sorry to hear you are having these problems at an early age too. Looking at the graph on my report, if was 85 I think I may just about be in the normal range of BMD

Take care and good to hear from you.

Sue.

[cocol]

My bone density is excellent, all my doctors have commented on how healthy my bones look, and I have never broken anything (and I have had some spectacular falls).

Anyway, my grandmother has osteoporosis and for that she takes calcium, vitamin C, vitamin D and has to sit under the sun for 30 minutes everyday.

hope it helps

[Guest]

Thanks for all your replies.

And Sue cheers for the link to other thread in doc & diagnosis

I have started on supplements , but its the weight bearing exercises that
are a problem.My ankle subluxes on walking although not all the time.Its hard with EDS to get the balance. They say walking or cycling(!!) is best.
How do you all get weight bearing done??

I guess its hard to compare as our age of diagnosis is different to the normal 'post menapausal ' women who suffer from it. How is anyones progressing?Do you have repeat scans after a period of supplements?
I'm thinking a year later or so.
Again thanks all for your input.
See you all soon

Siv
XXX

[Flora]

Hi shiv,
I have osteopenia in my hips, and take calcium and calcitriol to help. My rheumatologist told me that I would have to have repeat scans every 3 years to see how it is progressing.
flora