Support...thank you.

[Danni54]

Hi all . I just wanted to thank all of you who have supported me through the last few months. I , also, wanted to say I'm so pleased that the scammer warning helped. Thought I would let those who were kind enough to give me advice about my fracture's that I have had more problems with our hospital who appear to have lost my Dr.s referral for an ' urgent MRI ' and I have been given an appointment with an Orthopaedic Consultant having asked for an appointment with a Neurologist because my leg's are so bad as well as my fracture pain becoming much worse. Anyway, my appointment is on Wednesday next week. Oh joy !I must admit that I'm scared having had a diagnosis previously from an Xray of vertebral cancer. Since that Xray our hospital changed that to Osteoporotic wedge fracture's and I don't know what to believe! As some of you know, I don't trust our hospital because of a 15 month misdiagnosis for lung cancer! I have to lie down more now and Oramorph doesn't really touch the pain .I'm up 3 or 4 times during the night to go to the loo and I'm just exhausted. My leg's are helped by Buprenorphine but not all the time now. This is not like me to take to bed and I feel pathetic but my symptoms seem to be getting quite a lot worse. Thank you for ' listening ' and thank you to everybody for all support and advice. It means so much to me. Please take care all .

Very best wishes to everybody xx

[Fruitandnutcase]

Try to have a restful weekend and very best of luck for Wednesday. Hopefully that will answer some questions for you.

It would be a good idea to think carefully about what you are hoping to gain from your appointment and write down any queries you have or questions you would like answered. Put them in the order of the things that bother you most first in case your doctor is pressed for time. Are you able to take someone in with you when you go?

[Danni54 in reply to Fruitandnutcase]

Hi again. Thank you, again, for replying. I really just want an MRI which will show, properly, what is going on. Hopefully I will get a good Consultant! I don't have much faith in our hospital but.....! Not long now and whatever is going on I will deal with it. I did with the lung cancer and got through that so...! I think when you've had cancer once that niggle is always there especially when I was told, initially, that that's what it is ! Positive thought! I think the only person they will let me take in would be my husband but if I growl at Consultant's he gets embarrassed so I deal with it on my own ! Take care and I really appreciate all the support that you have given me.

[Blondeisbest in reply to Danni54]

Sounds like you've been through the hoop.... The mri will definitely show everything, mine showed all sorts, nothing sinister thankfully.... Wishing you luck for Wednesday.

[Ketchican]

Danni I do hope that things improve for you and that you get some accurate clarification as to your diagnosis. The advice sent from Fruitandnutcase is very sound and I would agree with those suggestions for meeting preparation. I am sure we are all rooting for you and wish you the very best.

[Danni54 in reply to Ketchican]

Hi. Bit late replying but I've had a really bad day and night. Thank you for your kind words. Wednesday can't come soon enough although I wish that I was seeing a Neurologist! I will write things down as I usually do forget something! I , also, really want an MRI! Everything has been such a battle for a long time and we seem to have to fight for everything these days. Keep your fingers crossed for me on Wednesday afternoon please! Will let you know what happens. Please take care of yourself . All the very best wishes x

[Ketchican in reply to Danni54]

I will be thinking of you on Wednesday and hoping that you get the support and advice that you obviously need and are entitled to. You are right, everything and every step seems to be a battle and I could weep when I read some of the stories on this site that are indicative of suffering that should not be necessary. Do let us know how you get on. Take care.

[Danni54 in reply to Ketchican]

Hi. Thank you so much for the support. This Forum is amazing and my struggle would have been much harder without wonderful people like you helping me through. I am getting a couple of the symptoms I had with the lung cancer which is a bit worrying and after going through the 15 month's of being ignored when I had lung cancer I'm afraid my trust has well and truly gone. It's exhausting having to fight all the time to be heard isn't it? Take care and thanks again. I will let you know what happens and whether I get listened to this time.....hopefully I won't have to growl ! xx

[Meuslialways]

Hi Danny, good luck for Wednesday. For your information the NHS allow anyone to have someone with them during a consultation not necessarily a husband. When I had major surgery on my spine to insert metal rods and plates to 50% of my spine in March 2023, the DEXA scan showed Osteopenia. When Neurosurgeon opened me up found my spine was crumbling. He told us afterwards that DEXA scans are not good at assessing spines!

The best Consultant for Osteoporosis is a Neurosurgeon. When I was first diagnosed 9 years ago was sent to Orthopaedic Consultant who instantly passed me to a Neurologist as he said Osteoporosis needed a Specialist in that field.

Goid luck and try not to worry.

[fraid in reply to Meuslialways]

I'm sorry to hear of your troubles, hope all goes well. Also glad I refused DEXA if it was no good anyway. Take care. 🤗

[Danni54]

Hi. Thank you so much for that. I did ask to see a Neurologist that I had seen a few years ago about a tremor in my right hand but our hospital, in their wisdom, are sending me to Orthopaedics! I didn't know that about DEXA Scans .That's awful news about your spine. My Mother had that and she was in so much pain. I'm so sorry. Are you getting pain relief? I'm thinking of you and wishing you all the very best.

[Meuslialways]

Hi Danni, no matter what pain relief I have been given over last 18 months doesnt help so dont bother! June 2024 sees my metalwork being taken out and new from Coxic to my neck then body and neck brace for 6 months. I'm 80 and have had a wonderful life as from being a small child until 10 years ago was an Adrenalin Junkie. So dont regret ending up like this as I have sooo much to look back on. Been with my husband for 42 years and we have done so much. I'm so lucky to have these wonderful memories and just have to get on with life with what it has thrown at me!

[Danni54 in reply to Meuslialways]

You are amazing and what a painful time you are going through. I love your name by the way ! I think our age group lived through the best of times. I understand about the pain relief although the Buprenorphine does help my RLS to a degree. Interesting that Oramorph doesn't seem to help many of us . I am 71and have been with my husband for 42 years! Born in India to an amazing Father and a Mother who loved me though she was difficult! Like you , I have done a lot, lived in Athens for 6 months , sailed round the Greek Islands etc. so have amazing memories but unlike you I get depressed at times with our hospital, medic's and my biggest regret that I can't have a dog because I, always had rescue or darling Golden Retriever's but I can't walk them now so.... no more dogs!

We can't really do anything else but get on with things and battle through can we. Please take care. It's been lovely 'meeting 'you even in this situation. Good luck when you get your neck brace off.

[fraid]

You're the first person I've heard of who actually wants an MRI, I hate them as a bit claustrophobic but it'll be the best thing to tell you all. I know what you mean about having no faith in nhs or hospitals, (I've refused to go anymore!) sad as we used to have huge respect for them. Hope all goes well, you get the answers you need so you can get sorted. Wednesday is a good day for it as usually quieter mid week. Deep breath, it'll soon be over. 🤗

[Danni54 in reply to fraid]

Hi. Thank you for your support. All the support and understanding I've had from you all has helped me so much. I'm lucky with friends but unless someone has gone through what we are all going through then I don't think that they can truly understand. I had an MRI a few year's ago when I had lung cancer and I know they are pretty awful and so noisy ! I remember taking Pink Floyd's, Dark Side of the Moon for the Radiographer to play ! Thank goodness he was a fan ! I must admit that I'm annoyed that I'm seeing an Orthopaedic Consultant when even my Dr. says that I have severe nerve damage and need to see a Neurologist and have the MRI first! Ah well...I just have to wait till Wednesday to find out what is going to happen. It is sad that we have lost all trust with the NHS . A close friend of ours was told that he didn't have Prostate Cancer after an exam and the Dr. was very abrupt and said that there was , absolutely nothing wrong with him. That was a few months ago and our friend is terminally ill. If our Dr. had listened to him he could have had treatment. We are not the only ones who have been let down which is scary.Please take care and thanks again. All the best. x