Osteoporosis of the spine- but also good news!

My lambkicking days appear to be over, beginner1 ...... have got osteoporosis of the spine now !

If anyone can let me know if there's anything I should or should not do (aside from lambkicking) please feel free: don't know anything much except put on to Risedronate (Actonel). They know about my deficiency and that I'm seeing haematologist and neurologist, but so far have only seen a nurse, -who by the way said "DON'T go on Google" !!!

And the Good news? Partner is back!

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  • Hi Cherylclaire bad luck about the osteoporosis, me too with fractures. I am no further in knowing about it, see the consultant next week. I got a phone appointment with GP to see if they needed to check vit D and calcium but she did not seem to want to do anything. So I wait.

    Glad your partner is back. All this hoohaa must be stressful for your partner too.

    Tell your nurse that Google is more useful than most of them. And if they knew more one would not need to Google.

  • Hmmm... I find 'Dr. Google' quite fascinating and much less patronising! P.S.sorry to read about the osteoporosis, but glad your partner is back, one less stress!

  • Hi Cherylclaire has anyone suggested testing your blood for vit D and calcium, I think someone mentioned vit k too. When I see the consultant next week I will ask him and pass it on.

    If you hear anything interesting. when you see all those people, do pass it on to me too.

  • I have osteoporosis too. Mostly spine deterioration ... they won't start me on medication as I'm 35 and they want to wait. I take calcium, d3, magnesium, zinc, folic acid and b12. I have herniated discs in my spine and fractured my wrist and hand in several places last year. Dislocated hip with fracture last year too.

  • TenilleMarie,

    Sorry to hear about the osteoporosis plus the rest. But WHY oh WHY do they have to wait till the condition deteriorates? Words fail me and this behaviour of waiting and lack of being proactive and preventive makes me mad!

    Have you asked them what the benefits and drawbacks of waiting till it gets worse are? I would. It's you life, your quality of life...

  • I have had Osteoporosis for 14 years and taking Alendronic Acid (previously called Fossamax) weekly, together with Calcichew-D3 Forte daily. However, after my last DEXA Scan in January of this year, I was surprised to learn that my bone density had increased. My GP was also surprised, but after some detective work I discovered on Google that B12 helps to increase bone density. I have B12 injections every 10 weeks for PA which was diagnosed 6 years ago, so it would appear that it takes approx. that length of time to show improvement in the bones, of course if you have more frequent injections it could possibly be a shorter period of time. I should have said that the Consultant told me I no longer require to take the weekly medication, only need to continue with the calcium and vitamin D. I am also surprised that this connection between Osteoporosis and B12 isn't generally know by Consultants and GP's. Or perhaps I shouldn't be!!!

  • Hi Nennie "I am also surprised that this connection between Osteoporosis and B12 isn't generally know by Consultants and GP's."

    "Or perhaps I shouldn't be!!!

    "

    I'm surprised that you were surprised long enough to write that you were surprised!!!

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  • Fantastic news for you. As for GPs and consultants not being aware of connection between osteoporosis and B12, this does not surprise me in the least! BUT are they ever going to be willing to take notice and learn? That's another matter..

  • It would be very interesting, don't you all think, if a survey was sent out to GPs, nurses and any other professionals involved in our treatment or decisions about our treatment, asking them to list all the symptoms that THEY believe relate to B12 deficiency. Without relying on test results at all. In other words, what are they looking for, what are they ruling out, what continues to present as a complaint, what checklist/s do they use ? What is prioritised?

    [Why do the lists we look at seem so much longer than the lists they appear to trust?]

    Anyone know anything about treatment involving B12 and cyclic etidronate? (There is research: Melton ME, Kochman ML, but I wondered if anyone had personal experience of this ) Or is this yet another fight I can't win?

    beginner1 , bit ironic how I have been prescribed calcium and Vitamin D (as well as Risedronate) when I have continued to have very NORMAL range for both of these, last tested 5th April ....?

    TenilleMarie , what reason did they give you for such weak bones in one so young ? My heart goes out to you. Have you read book by Dr Marilyn Glenville ? Have only just been diagnosed so so far have only flipped through it, but might be worth checking website too.

    Re being told not to Google: said " I don't need to, I'm a member of the Pernicious Anaemia Society and I trust them to advise me ! " Well, who knows, if enough people say it, she might just join up and learn a few things...

  • They don't have a reason. I was perfectly healthy until five years ago. Then my bones started deteriorating, I developed Addison's disease, arthritis, connective tissue disorder, stopped processing vitamins, and on and on. The only thing I was born with was genetic hemachromatosis and that wasn't diagnosed till I was close to liver failure. I just finished my first loading dose week of B12 and I've never been so tired in my entire life which is saying a lot! I will do the injections weekly now for a month and then monthly. I sort of got burn out from trying so hard for so long to figure out what what going on and how to fix it. Took a break and now I'm starting to investigate again .

  • "beginner1 , bit ironic how I have been prescribed calcium and Vitamin D"

    Hi Cherylclaire bit ironic that I have not been tested, as far as I know, (having spinal fractures,) for Vit, D and calcium and none has been prescribed if I have been tested. I might have to do that privately as well.

    Up the PAS, even if it's OT they listen and help.

  • You are welcome to mine: went to GP this morning and asked why, when I'm continually well within normal range for both Vit D and calcium, I have prescriptions for both from osteoporosis nurse, she said "It's just standard treatment", so you are being short-changed, my friend.

    Also, she said that her previous treatment of 2 B12 injections a week was well above guidelines, I told her that it was actually under the guidelines : "if neurological symptoms; one injection every other day until no further improvement..." and to me, that's the hard part, because who really wants to say ".. this is all I'm ever going to get back, so let's start the maintenance dose now because I'm resigned to living like this for the rest of my life."

    To give her due respect, she did keep this treatment going from October last year despite some resistance from nurses and probably got told off by haematologist too- I think it was a first for them. She also laughed when we told her that the haematologist believes that my neurological problems are due to having smoked for so long , starving my brain of oxygen. Wonder what the neurologist will find when s/he does a brain scan ? Thousands of dog-ends perhaps.

    Don't laugh too much, you might snap something else.

    PS: so glad partner was there to support me, really can't cope with much when on 1 injection a month- didn't shout/ bite anyone and only nearly cried (which doesn't count).

  • Hahaha Marz - are you trying to tell us B12 thickies something?

  • ... as if :-) I come to this site to learn from others who know more than me :-) Like to learn something new everyday if I can. then I have to try and remember it !! The good thing about being on forums is that items are repeated again and again - which is very helpful !

    Dr Myhill if one of my go to websites - and I have read her book - Sustainable Medicine ....

  • Wonder sometimes if all we are doing is repeating ourselves over and over, luckily to other people who have impaired memory, so they see it as fresh every time ! "Well, I never knew that, how fascinating....must try to remember it"....etc etc etc

    Unsurprisingly, since injections now 1 a month, have been unpredictably symptomatic which makes things difficult (even in the planning), but did have a very lovely birthday: got out of London and had a great pub lunch at a table overlooking a stream, small bridge and meadow. Weather wasn't quite as good as Crete I imagine, but it did not start raining until the moment we walked out the door !

    Next thing to look forward to is my Neurology appointment on Friday. Not sure what to expect, except haematologist wants a brain scan done, so any advice welcome. Last injection on 21st April, so will be exactly 2 weeks ago.

  • Hi CherylClaire,

    Sorry about osteoporosis of spine. Do hope you will get some relief when using Actonel. It must be rather painful.... sending you much empathy and best wishes.

    Glad your partner is back and hope he will give you the support you need.

    Good luck. x

  • Thanks very much, JGBH. Started taking it on Monday. Will let you know how it goes.

    PS: Also glad partner is back, and I'm sure she will !

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