Why is it that we seem to solve one issue that then gets replaced with two new ones.
I’m fairly happy now with the b12 situation not ideal but at least I’ve fought my corner and managed to get a p.a diagnosis ,at a price no thanks to nhs.and I’m doing well on my self administered injections every other day.
Yesterday I finally got my results for my dexa scan the second one in two year period because my lovely professor was concerned about my bone health ,nhs wouldn’t do it so I paid private and had it done.Two years ago I had oesteopenia in my spine and hips,I now have osteoporosis which would explain the severe pain in my right hip and spine. I’m going to need treatment now for this and I don’t like what I’m reading about the treatment so any tips would be welcome.
I’ve now got to have a c.t scan on my kidneys as the ultrasound radiographer said she wasn’t convinced what she saw were stones so recommended I have ct scan,again I’m having to pay private via my professor as gp not interested despite giving him copies of the private ultrasound scans showing a 5mm stone and a new in last 12 months 8 mm stone,if indeed these are stones.
What I’d like to know if anyone can help is if I ask the professor to refer me for a full body scan would this show any degeneration in my spinal cord because of the p.a which I now know I’ve had for many years and I’ve also suffered terrible back pain for many years,I’m talking around 35 years of crippling back pain on and off.
Sorry to moan but I’m feeling a bit low again and yes I’m overdue my injection lol I’ll do that after breakfast.Ive had a nasty bug last 4 days so I’m just getting over that now thankfully.
I’ve ordered the high dose vit d/k2 from amazon that fbirder recommended but I’m a bit concerned about the calcium supplements due to the possible stones so any advice appreciated please.many thanks x
I can't offer much help but I too was diagnosed with osteopenia last year. There is a good forum here on HU for "Bone Health", which I found helpful.
I had been taking vitamin D3 for years and had kidney stones. It wasn't until I joined that forum I found out D3 should be taken with K2. Since then, the problem has resolved itself.
It is a shame that nobody looks else looks at the whole body like your professor because, in my view, all our problems are connected.
That’s helpful to know about the bone forum ill have a look now.i usually take the d3/k2 sublingual spray and funny enough my calcium levels showed normal,blood tests and 24 hr urunary calcium that’s why we are concerned about the “stones”.
I gently guide my professor and he does all the putting together for me and recognises I have numerous health issues and we work together to whittle them down he’s been great and listens to me and his secretary is fantastic,I’ll be so relieved to get the ct scan done as like everyone we think the worst don’t we.ty xx
Hi Nackapan I am generally happy in myself but it just gets overwhelming doesent it and ive no one to talk to ,thank god for my friends on the forum who understand that.I can’t share as family just roll their eyes ,you know what I mean,it’s like well your old what do you expect,so I don’t bother telling.Sad selfish world we live in now I’d have run from here to hell for my parents and have for my children but hey ho that’s life I suppose.
I’ll try get that full body ct done if not now with kidney scan then I’ll do it at a later date.
I can only find references to MRI being used to diagnose subacute combined degeneration of the cord. ncbi.nlm.nih.gov/pmc/articl... No reference to CT scans.
I was found to have osteoporosis of the spine a few years ago- but I was told this was not a painful condition and would not explain my lower back/left hip pain.
I was given Risedronate and vitamin D tablets.
I vaguely remember that the original osteoporosis nurse who put me on Risedronate told me that the other treatment she had been considering was discarded as an option because I already have daily diarrhoea. Really sorry I can't remember the name of that one for you !
I got constant lower jaw pain and all the teeth on that side became loose, so stopped the Risedronate as these were mentioned on the list of side effects. The jaw pain stopped, teeth stopped being loose, except a wisdom tooth which was too loose to save.
This is probably what you have seen, heard or read about: possible necrotic jaw issues ? I was sent to a Rheumatologist who said that this side effect was very rare- but that since my osteoporosis had improved, she would give me 18 months with vitamin D only and then retest level with Dexascan. Although Coronavirus has got in the way of this probably, and meant a delay, as far as I'm aware I'm still on the list. She told me that there are other treatments that we can try if osteoporosis has deteriorated and vitamin D tablets ineffective alone.
Yes, K2 with vitamin D- although my GP says "If you needed it with vitamin D, the NHS would recommend it".
I have now got a row of loose teeth in upper jaw - this time due to one or two abscesses. It has happened before to the same teeth but corrected itself which seems unusual. It is probable that there is another reason entirely for all of this, but I seem to be falling into a doctor/dentist gap here in terms of tying it all together. I have written to the Oral Medicine consultancy team -who have been helpful in the past with saliva gland and duct problems and angular cheilitis. It will be hard to get responses currently.
Having B12 deficiency can mean that you are prone to infections (various!) and healing can be impaired which might explain the nasty bug you had. I doubt that this is my issue as I've been self injecting frequently for over 3 years now.
My daily diarrhoea and the lower back/ hip pain were the main symptoms - along with fatigue - that made me first go to the GP in early 2015. The constant back/hip pain has gone almost entirely now.
I did go to a neurologist several years ago and had an MRI scan of brain, which was fine. That was an unexpected result to me as my memory and cognitive abilities were very poor at the time - a massive relief. He also had electric nerve tests done (also fine) which test main nerve responses to hands and feet. He didn't see a need for an MRI to spine in my case - but that can be done via neurologist.
You should not have to pay privately for this.
How can I say this politely ? Oh, yes. I know :
Your GP isn't being very proactive on your behalf !
Hi Cherylclaire my gp has no interest whatsoever and despite my professor asking repeatedly for tests and scans hes did a deafie and just doesent seem to want to help.I actually got a text a couple of weeks ago saying as your results have came back normal no further action is required! What so my body continues to make stones too big to pass and we ignore the reasons behind it,especially as the radiographer isnt convinced it even is stones and has recommended a ct scan to investigate.I told the prof I feel like I’ve been smacked and told to naff off.
Thankfully he’s on my side and has did his best to get me nhs treatment and I’m not the most patient patient lol in the world so I want to know now ,not in weeks ,how I can stop or delay these things escalating,that’s why I say ok refer me privately please.id never have known I now have upgraded to Osteoporosis If I d not had the second dexa done so for me the £125 was money well spent.
I joined the NOS today so I’ll get plenty info and advice from them re bone health and the d3/k2 that fbirder has recommended on forum came today and I’ll follow as much advice as I can to improve my scores naturally now,I went through night and bought a load of smelly cheese and yoghurt I’m hoping my body can handle the increase in dairy , my lactose intolerance will soon let me know I suppose.Lol.
Hopefully when I get this ct scan of my kidneys done we can work out a plan when we have all the info.
Thank you as always your advice is so appreciated and I’m sorry you go through so much yourself.I have came on leaps and bounds these last few months and I’ll just have to keep plodding but it’s nice to have the opportunity to vent lol.many thanks xx
Change your GP, I know it’s hard at the moment with what’s going on but with everything thing you have you do not need a fight, save your self the time and energy convincing the GP that’s giving you the hard time and find another one if you can.
There is the option to complain to the practice manager that you have had several tests for your diagnosis with a consultant and the care your under with this GP currently is not helping your health and making your quality of life a lot harder than it needs to be by not treating your conditions and health which is not helping your quality of life. (Quality of life) they take note of this- from experience
You can find the name of the surgery manager on your doctors surgery website or you can call them to get the information.
Hi LittleA thank you for your advice.This is a new practice I’m with and the only one available and he is the head partner,he’s really nice on the phone I’ve never met him he’s not my named gp but because of previous experience I bypassed named gp and went straight to head partner.Hes did some of the stuff on the nhs but not the “expensive” stuff like the sst testing the dexa or ultrasound and ct scan and because it’s a private non nhs consultant he doesent have to comply at all as far as I’m aware.I think we are all frustrated right now because we can’t even get to see a gp too busy hiding away from us and not fulfilling their contracts to us they should be held to task for this alone.Ive moved house but reluctant to change gp in new area as I want some kind of continuity while I’m having all this stuff done till we can get some kind of answers.
So sorry to hear you have all these problems with your gp, sometimes it can be better to change gp, as a new doctor will look at your case on your first visit, go through your symptoms etc, as I can see you are not getting anywhere with old gp and maybe gain by switching!
Thankyou Dee as I said there is no alternative gp it’s very difficult nowadays to move because of catchment area rules plus I don’t want to move too quickly as things have a habit of going astray and I want to keep up the contact between my consultant and gp until we can get things sorted and if that means going private for the testing then I’m choosing to continue to do that.X
No worries, just a suggestion, best to do what's best for you. I am using Patient Access to see some of my medical file, especially blood results etc, I have found a few discrepancies on my record: i.e broken wrist when infact it was my elbow!! Keep pushing gp, I think they eventually give in for a quieter life!😀
the way that osteopenia and osteoarthritis is determined is such a farce in the beginning. Going backs years and years when bone loss was discovered to be a cause for people over 50 especially woman the research was very flawed. They compared the bone density of thousands of 20, 30 and 50,60 year olds. The changes in bone density are a completely normal aging of bones process and are effected by diet, ie natural good intake of vitamins minerals especially calcium obviously. Then comes activity levels. This one is the most interesting as runners get the worst deal with their bones badly effected. Osteopenia was recorded in all people over 30 to some degree and is completely normal bone ageing. The research also suggested that the treatments for it were likely to cause calcium buildup in the arteries and showed actual calcium deposits in arteries. If I can remember which nursing manual I read it in I’ll post it. You’ll have to forgive my stupid brain it is without b12!!!
Yes that’s why I’m reluctant to have the usual treatment for the osteoporosis Parksy because I had read about the issues with side effects seems it’s bad enough to warrant them saying treatment for no longer than 5 years,stuff that there’s always alternatives.I do get a lot of pain in my hips legs and back so I’ve joined the ORS they have a free nurse helpline and will send me out info on how to best treat this but from what I’ve learned so far increase my d3/k2 increase load bearing exercise ,walk more which will be easier for me now as I’ve moved to a greener area no broken paving to try and manoeuvre lol.
My mum had hip replacements done then died after a fall so you can understand my fears,Ive already had a brain injury from a fall that I needed intense physio to help me recover and I’m still vulnerable so I get terrified of a repeat of that,it doesent help that I have so many issues going on but all I can do is work my way through the list lol thank you for your advice it’s much appreciated and why are you “without b12” if you don’t mind me asking have they stopped your treatment ?
Blimey you do have a lot going on, swimming is a good way to keep flexible and gentle yoga. Best way to get your D3 is through nordic naturals flavoured cod liver oil it tastes amazing and K2 is safer through green leafy veg. I was refused my injection, my gp and a clinical director decided 8 years worth of injections would’ve resolved my deficiency 😡
Idiots aren’t they.Im guessing you’ll go down the same route as the rest of us with idiots for doctors and self inject,don’t hesitate if it keep you well, it’s honestly turned my life around and I curse them because if I’d had the treatment I needed I wouldn’t have had the brain injury and the falls caused by lack of b12 ,nothing else.
I suffered so much with that but now I have a massive chunk of my old self back and I’m capable of finishing sentences and having conversations again.xx I’ll look up the Nordic now thank you x take care
With vit d with k2 is recommended please on amazon xx
Hi Loloulou72 I’ve just started on Howard and James vitamin D3 plus vitamin k2 high strength vegetarian tablets they’re nice and small £7.95 for 120 as recommended by fbirder,I’m not as clever as him at putting links sorry.x
Hi, firstly disclaimer that I am an iyengar yoga teacher Try and find a "therapy" one near you - we're trained to help. You must get medical intervention but the right kind of exercise can make a difference too - needs to be supported work, but working your muscles hard.
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Try and find a "therapy" one near you - we're trained to help. You must get medical intervention but the right kind of exercise can make a difference too - needs to be supported work, but working your muscles hard.
Fed up
Can pernicious anemia cause sudden, severe diarrhea?
FED UP!!
Feeling like I've plateaued
