Ataxia UK

Bone scan

I went for a bone scan and I have found out in a roundabout way, the hospital didn't tell me!! That I have osteoporosis. it is not Ataxia related and I would have got it anyway.

Well I went to a newly diagnosed seminar. The things I heard were the things I have been told for ataxia.Falls, core muscles, balance that sort of thing.One thing for sure, I know what to avoid! I have to take andrenic acid and calcichew tablets and keep up with my excercise. It appears I have weak bones that will break easily, so I have to be careful of falling. Seeing as falling goes with ataxia there is not much hope!!

Take care

Fifa

9 Replies
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I know you have been through a lot recently Carol and this latest revelation must add to your discomfort. I just wanted to wish you well and to ask how you are coping at the moment? x

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Hi Fifa,ive had a bone scan also,i also was told i had Osteoporosis,and told to take Calcichew tablets. Before ca i broke my wrist and wonder if that was the start of my Osteoporosis!.

I am very careful not to fall,its strange when a person is used to being in control and finding out one cannot just take things for granted anymore!

As i live on my own and used to being very independant,im finding the lack of control hard to bear.Feel very out of control now,im worried about going out on my own as well,my spacial awareness is not good so ive become a bit "agraphobic. Sorry,rant over.haha.

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Helk Iain

Thank you, much appreciated.

Hello Scorpio

It was nice to hear from you, I am sorry you are having such a hard time. Living and being alone is not easy. I understand what you mean about not going out.I too avoid people, especially those I knew before I had this condition.It's easier that way. It's such a pity we don't live closer, we could get together to compare notes!! At least we have this site, so can talk.

Take care

Fifa

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hi fi i had chemotherapy for a rare blood cancer as a child with that i was given steroids these damage bones i was given a dx of osteoporosis i was given didronel pmo 1st now i take residrenate but now i also have osteo-arthritus in most of my bones

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Hello Jayjay

Thanks for the reply. You have certainly gone through the mill.

I too have osteoporsis I take aldrenick acid weekly. I find it upsets my system so when I see my Doctor later this week I will discuss it with him.

Take care

Fifa

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hi hun im sorry to hear of ur ills myself i use these negative experiences and turn them into positives by helping other people do u have facebook my name on there is jay jones if u would like to know anymore give me a hollow

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I have had a dexa scan and I now take Ibandronic tablets once a month (alendronic acid upset my digestive system every week) and I take Adcal with D3 twice daily. All on prescription.

So far I have had no broken bones.

I found it quite upsetting at first on being told I had bone loss, following extensive treatment with corticosteroids, but I am determined to get on and live my life and do what I can, organise what help I can and manage to pace my days reasonably well. I have times of remembering earlier days then remind myself that I am grateful to ahve the abilities and support I have.

Wishing you well.

Lanarkian

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Hello Lanarkian

Thanks for your reply. I take andrelic acid tablets weekly, this week they have really upset my system. I see my Doctor on Friday I will ask him about changing.

Take care

Fifa

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I have tried various prescriptions for bone dendity problem and I have been offereda once a year infusion I am not sure about this aaaaaayou can stop taking a pill if it upsets you but once an infusion is in it is too late to stop it.Has anyone had this treatment?

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