Dear friends,
This is Steve again on behalf of Margaret my dear wife.
Just as you dare to think matters are slowly improving, this has happened!
Margaret got out of bed on Sunday morning and went to the bathroom. As she stood up she felt a vice like grip from her spine, around her ribs and crushing her sternum. She has coronary artery spasms and microvascular dysfunction. Her natural response is to use her 'GTN' spray to open her veins. On this occasion the spray had only a limited effect.
A very painful day followed, during which Margaret became more and more certain that the crushing, vice like pain around her ribs, was nothing to do with her heart. The pain in her back was too familiar and too much like that experienced in recent lumbar fractures.
On Monday we went to our GP surgery and the doctor sent Margaret straight to A&E. Her breathing was difficult and simply standing or walking was very difficult. He gave her a report from him to the triage nurse. After being X-rayed, the doctor in A&E informed her that he believed she had sustained 3 more fractures, this time in her Thoracic spine ( I was not allowed into A&E) Margaret tells me that she became very upset in the full knowledge that she was going to have to deal with these new fractures once again without pain relief. She also sensed that there was more to tell her but probably because of her upset, the doctor finished the conversation. He did however tell her that she needed to stay in overnight until the full radiology report was available and to monitor her heart.
The next morning a different, ( Lady ) doctor informed Margaret that 10 out of 12 of her thoracic vertebrae were fractured and that her chest pain and SOB was due to the fractures affecting her lung function. ( That is now 15 spontaneous fractures since Autumn of 2018 ) This doctor spoke very passionately to Margaret in a firm manner, telling her that she needs to start shouting because she believes Margaret to be a 'medical emergency'. She stated that more tests need to be done on her bones to find out if there is an underlying cause for her very severe osteoporosis at such a relatively young age, especially as the fractures are all spontaneous.
Margaret now has mucus which she can't easily clear. The doctor pointed out the need to keep her lungs clear of infection because ultimately that is where the danger lies.
Margaret is now home having promised that she will call an ambulance if she has any breathing or heart problems.
Just to let you know, when we got home yesterday afternoon we still had not heard when Margaret's Forsteo was to be delivered. Anger and upset does motivate action however, and now, following some direct 'phone calls we learn that it is to be delivered on Monday.
Margaret went to our surgery believing she had yet another fracture. 24 hours later, we learned the full extent of what was causing ( and is still causing ) her pain.
To say that we are in shock, doesn't really tell the full story. Personally, I am very angry at the shortsightedness of a major south London hospital that refused to prescribe Forsteo to a (then 63 year old )who was having spontaneous fractures and who cannot take pain killers.
I'm angry that there was no thought to find out why?
This week we will be urgently asking for help and for more tests on Margaret's bones. Clearly in our ignorance, we were very wrong to just 'accept' that Margaret has osteoporosis .
Dear friends, Margaret does want me to let you know that during her time in A&E and the sleepless overnight stay, she had great comfort in recalling the very kind support and words you had posted in reply to her previous posts. Thank you very, very much.
Best wishes to you all and hoping this finds you well. We really do appreciate being able to share this with those who understand.
Margaret & Steve❤️👼🏻🙏
Hi JoJoJersey Girl,Margaret has severe osteoporosis, however we need to question why her osteoporosis is so advanced and aggressive . So far the only person in the medical profession who has questioned this, is her GP.
Margaret also has microvascular dysfunction and Coronary Artery Spasms, this is now collectively known as INOCA and there is a multinational team investigating this (once thought) rare condition that in truth, isn't that rare but simply under diagnosed . She has at least one but probably two inflammatory conditions including Lupus and this seemed to develop after a bad reaction to strong pain killers. The reaction resulted in her being diagnosed with Stevens- Johnson Syndrome, which was originally thought to be a one off event but now is believed to affect the patient for years to come.
The whole picture is 'wrong' . Margaret has been a very fit and very active mother to 3 sons (including twins) . Her lifestyle has left her looking still very fit and well and this seems to be at odds with what is taking place internally.
Thank you for taking the time and trouble to reply to Margaret. It really does help and is much appreciated.
Kind regards, Steve & Margaret 👼🏻❤️🙏