My Mum

[Moggie]

Hi All,

My mum is 84 and has Paget's disease of the head, which has lead to profound deafness.  Paget's runs throughout her family, from her mum and nan too her sister and brothers and they have all "just learnt to live with it".

She has had a few bad falls recently so I took her to the GP's and, amongst other things (low thyroid and very low B12) she has very low vitd, which is sitting at 13 (range <50 deficient).  She is now taking 10,000iu liquid vitamin D daily but I have notice that it also contain calcium.  So my question is:- could this make her Paget's worse.

Thanks

Moggie x

[reddon]

Moggie Redon I have pagets in right knee right foot left elbo and small of the back sad for your mum and I am told pagets runs down the male line,, stop I was told to have chemo two  years ago I refused, so now have trouble getting medical help, stop Iam 80 years young ,,no drugs and note you give your mother 10,000 iu  liquid v/d daily so i am searching for any help keep safe Bryan

[Moggie in reply to reddon]

Thanks for your reply.  Paget's has hit almost every sibling of my mothers, male or female, but it does seem to be worse with the females of her family.  Her mum had it in the hip, as does her sister, her nan also had it and I think one of her brothers has it.

She doesn't receive any treatment either, but that is by choice, but I cant understand why they would want to give you chemo for it, is that a recognised treatment for Paget's then???

My mum has very low vitd levels so the vitd is not to treat the Paget's but is to increase her vitd levels.

I hope you get treatment soon as I am sure they cannot with hold all treatments just because you have refused one.

Moggie x

[reddon in reply to Moggie]

Moggie O YES THEY DO,AND CAN BIG FARMER (DRUG  COMPANYIES )HATES PEOPLE TO THINK OUT THE SQUARE  I HAVE BEEN UNABLE TO GET TREATMENT FOR TWO YEARS, WE ARE TOLD PAGETS WILL NOT KILL YOU ,,YOU WILL DIE WITH ,,IT,,CHEMO HAS A 2% SURVIVAL RATE AFTER TWO YEARS , CHEMO DESTROYS YOUR IMMUNE SYSTEMS SO NEW BONE WILL GROW AGAIN WITH OUT A  IMMUNE SYSTEM ANY THING MAY KILL YOU,, KEEP SAFE REGARDS  REDDON,,

[Moggie in reply to reddon]

If this was me I would be changing my doctor as I have refused treatments many times (beta blockers and wafarin being one example) and never have I then been refused other treatments.

You keep safe too and I hope you get the treatment you want and deserve soon.

Moggie x

[Hidden]

I have recently been diagnosed with Paget's and have refused the treatment. But seem to be feeling more pain. Am taking but d. But so far only paracetamol. What do you take for the pain ?,if you have any.

I have only just found this site. I am very worried which I think is making things worse .

How long have you been suffering?

Worrykins.

[TSanders02251960 in reply to Hidden]

I was diagnosed in 2010 and then met a different doc the next day to inject my right knee due to arthritis and was told I did not have Pagets disease. Now I have had a bone scan and we know it is in my skull, right femur, right hip, clavicle and sternum. I am having pain and depression. The docs here in America just don't seem to treat Pagets they even tell you that. NO infusions happening here. I have been told that I have fractures, in clavicle and I believe my femur. I have located a specialist in Michigan and have an appointment with him in June. Also having shoulder surgery in June but concerned that the ortho doc may not understand the damage to shoulder could be somewhat due to the pagets. I can no longer take nsaids, due to my kidneys. I am 57 years old and hoping someone can help me

[Moggie in reply to TSanders02251960]

My heart goes out to you. My mum had an MRI scan recently and they could not believe the extent of the pagets in her head. They have asked her permission to use her scan to train others doctors. He also could not believe the extent to which pagets runs in her family and said he has never heard anything like it.

Sadly my mum passed away three weeks ago (nothing to do with the pagets I might add) as she had cancer of the spine and kidney.

I wish you all the best on your journey and hope you find the treatment and guidance you are desperately seeking.

Moggie x