|
Posted 12/07/2011 09:56:55
|
|
|
|
| By chance reading on the NHS website I discovered that I had been sent to the Rheumatology department after my bone scan and did not see an Osteoporosis Consultant. I was given the drugs and told to come back for another scan in 4-5 years. I see now that my immediate hospital does not have an Osteoporosis Consultant and I would have to travel further afield. Should I have been offered the option, am I getting the best treatment and should I insist on seeing a 'proper' Consultant
|
|
 Posted 12/07/2011 11:08:59
|
|
|
|
Good point,I feel exactly the same i have had osteo for many years now but never seen a consultant who actually specialises in it.Im beginging to feel that there are none.Which puts me in a dilema as to who i should ask for help..I have a dla tribunal coming up and want to put across just how bad my osteo has changed my quality of life ,due to the many fractures i have accured from it along with several other conditions such as fybromyalgia,spondolosis,thrombosis and astma my quality of life is very poor.but not having a specialist who can speak up for me seems to be causing alot of problems...If any one no's of any help i could get i would be really greatfull..Many thanks Spangee 
|
|
|
Posted 12/07/2011 16:48:11
|
|
|
|
Hrumph! Consultants! I have seen one, and still feel shortchanged. The reason I feel annoyed is that I was precribed AA and my medical records show I should not be prescribed AA. So I queried the consultant - and he just said 'you worry too much about osteonecrosis of the jaw, your far more likely to fracture a bone'.
While that is true, there are drugs for OP that do not increase the risk of osteonecrosis of the jaw (if you have invasive dental treatment - which I do) - so why was I not prescribed those?
So now I am relying on 'self-help' as I do feel that the NHS is really not interested in people with OP.
I have had lots of support from users on this site.
Sarah
Tscore Lumbar spine -3.3, Femoral neck -2.6, Hip -2.2
Alkali diet (+ no caffeine/sugar/salt/rhubarb/spinach) and exercise and supplements of Vit D (2,000IUs daily), Vit K2 as MK7, vit K2 Menatetrenone, Cod liver oil.
|
|
|
Posted 12/07/2011 18:43:38
|
|
|
|
I feel I have to stand up for consultants here (in my area anyway). I have had a wonderfully proactive rheumatologist for eleven years. She, it was, who sent me for my first Dexa scan, due to the known link between RA and OP, despite me only being 40. I Was unable to tolerate the bisophosphonates and could not have SR as I was pre menopausal at that time. She has provided regular scans to keep an eye on the OP, and a referral to an OP specialist when it had significantly deteriorated. This second consultant took a very detailed history, lots of bloods and discussed the possibilities in detail. She also worked out my FRAX score as 'significant' at 19% risk of spinal fracture if untreated. I was also referred to an OP trained physio, to work on my balance problems to help prevent falls.
It's not often the North East comes out top in a post code lottery, so I feel no shame in celebrating this service. I see my Rheumatologist on Thursday and I'm hoping she will have news from the OP consultant,
diagnosed OP at 40, menopause at 42. Intolerant of AA and SR. Got along on Adcal D3, diet and exercise for last ten years. OP worsening. Fractured knee, fibula and shoulder this year. About to commence annual infusion.......
|
|
|
Posted 12/07/2011 23:10:05
|
|
|
|
Linz
I think that the 'postcode lottery' exists in OP treatment! And the north is winning! I am glad that you are getting alot of support from your consultants - could you ask them to relocate to Oxford?
Well, if not relocate, at least talk to consultants in Oxford?
Sarah
Tscore Lumbar spine -3.3, Femoral neck -2.6, Hip -2.2
Alkali diet (+ no caffeine/sugar/salt/rhubarb/spinach) and exercise and supplements of Vit D (2,000IUs daily), Vit K2 as MK7, vit K2 Menatetrenone, Cod liver oil.
|
|
|
Posted 13/07/2011 09:49:05
|
|
|
|
|
|
|
Posted 13/07/2011 09:57:38
|
|
|
|
| Hi Sarah, Really interested in your post. I live in the north east and would really like to see some one who knows what they are talking about. GP has no idea. My previous Gp is now semi retired but I did manage to speak to him on the phone and he told me I should have been having bone density scans every 2 years because of early menopause,thyroid problems and 2 cycles of chemo. Instead I had to fracture a vertabrae before I got one. Think I will mention it to my oncologist who I see every 3 months and see what he sugests. Keep positive Janny
|
|
|
Posted 18/07/2011 19:17:41
|
|
|
|
| I suggest you all move to Birmingham: I have had fantastic treatment here! My bones are pretty awful but I am happy that I could not get better help anywhere. I am so sorry that other parts of the country aren't so good, we all need the best.
|
|
|
Posted 27/07/2011 12:26:55
|
|
|
|
| I ahave Dr Davie at the Agnes Jones and Robert Hunt orthopaedic hospital in Oswestry, Shropshire. It is over an hour's drive away but well worth it, he is brilliant.
|
|
|
Posted 07/09/2011 17:17:24
|
|
|
|
What has happened to the formatting of this post?
I cannot really read it anymore.
Can you?
Sarah
Tscore Lumbar spine -3.3, Femoral neck -2.6, Hip -2.2
Alkali diet (+ no caffeine/sugar/salt/rhubarb/spinach) and exercise and supplements of Vit D (2,000IUs daily), Vit K2 as MK7, vit K2 Menatetrenone, Cod liver oil.
|
|
|
|