Does the medical profession care any more?

[Danni54]

Hi all. I have been thinking about you all and have wanted to write but I have been going through more hell. One of our Dr.s decided to change my painkillers from Buprenorphine to Tapentadol which hurt my tummy. I have a 10 cm Sliding hiatal hernia so some medication is a problem. She then changed the Tapentadol to Oramorph and morphine pills , MST which were horrendous! They hit my gut and I was sick 3 times that night, being asleep and sitting bolt upright and being sick is horrible but I also had a bright red rash from my chin down to my waist. After being sick for the 3rd time I was exhausted and felt so ill for 3 days! I rang our Surgery and asked them to let the Dr. know but heard nothing back! Luckily, I had some Buprenorphine so I started to take them again . I had to phone the Surgery again to make an appointment to have a phone conversation with my Dr. That was a week after the allergic reaction ! By the way, I didn't take the Ropinirole! Shhh! I told the Dr. that they hurt my tummy! I have been through Endometriosis, 3 major ops for that and a couple of minor, no children, bowel problems and investigations. 1 Gastroenterologist telling me that I have a thickening in the Colon which might be a tumour and a Polyp but nothing was done ! I have , also, had lung cancer with a tumour which was ignored by the Pain Clinic for 15 months until I got pneumonia and it was noticed!! Everything then moved quite quickly and I had an upper right Lobectomy. Now in remission! There is more but I just wanted to tell you all SO that you know that I am a fighter.....but I am getting tired of fighting the medic's now!!I have been begging the Dr.s for 3 years to see a Neurologist in our hospital. They said that there was no point! I had seen him about 10 years ago because I have a bad hand tremor and he was so thorough and kind and he diagnosed an Essential Tremor. Unfortunately he doesn't do Private Consultations. My Dr. has now agreed to contact the Neurologist but the waiting list is up to 2 years! I told the Dr. that I am , also, going to write to the Consultant and the Dr. thought that that was worth a try! So, my question is, how could my Dr.s leave me for so long in agony and struggling and not give me the help that I have been begging for ? I have given them the information from the RLS Society ( I don't believe that they read any of it and didn't put the posters up !) and had to fight for Buprenorphine and have had to ask for blood tests. The recent tests have shown that my thyroid is struggling, my Folate level is low and my Ferritin level is always 36 and below so I am now on more medication for all of that but surely the Dr.s should have been keeping a check on all of that ? Why is it up to us these days to fight for treatment and constantly fight to even check up on our bloods ? Nurses have taken over a lot of jobs which Dr.s used to do and quite frankly, I'm feeling too sore, exhausted and ill to keep fighting....but I will I suppose! I'm going to be 72 in a couple of weeks and I won't forgive the Orthopaedic Consultant I saw a few weeks ago who told me that I had had too many birthdays which is why I have Osteoporosis!

I thank goodness for all the help and support I have had from all of you here, in particular Jools and Sue who have been amazing. Huge hugs to you both. Big hugs to all of you who have been there for me . Please take care all of you . RLS and all that goes with it is just horrible. Thinking of you all. Love, Danni xxx

[Joolsg]

Danni,I have no words.

It is a national disgrace how RLS patients are treated in the UK.

You need an iron infusion. Your GP should be referring you urgently.

I can only suggest you take legal action.

The RCGPs and the ABN refuse to listen. They will not teach RLS or recommend their members consult NICE cks guidance.

So the only solution left to us is legal action.

Several firms are aware of how appalling RLS treatment is in the UK.

You have additional negligent issues to discuss with them.

The two main firms aware of dopamine agonists/augmentation and ICD are Leigh Day and Switalskis.

I'll send links via chat/message.

[ChrisColumbus]

A very very sad story.

[Danni54 in reply to ChrisColumbus]

Thank you Chris. Your sympathy is much appreciated but I have pushed through everything and have done a lot with my life including tutoring adult Art Classes , organising Exhibitions and some of my paintings ended up in America etc.! I loved tutoring until I met a few horrible people....can't be bothered with that ! I have been married for 40 years and we have had some beautiful dogs....and friends! So, so lucky with that ! Since I fractured my vertebrae and the RLS started about 4 years ago, that's when my life became horribly restricted but I'm still trying to battle through. Can't have dogs which breaks my heart and I had to stop driving but I'm still hanging in there! I appreciate all the support that you and the others have given me. It means so much and helps to keep me going. I am going to contact the Neurologist tomorrow and I am going to beg him to see me ! I still don't understand why the Dr. wouldn't refer me 3 years ago because they knew that the fractured vertebrae is trapping nerves! Mind you, I don't understand how my Dr.s minds work!

Please take care of yourself and thank you again.

Very best wishes,

Danni

[Birdland in reply to Danni54]

Hi Danni, I’m so sorry you have been struggling so much. Life sure can through some curve balls. Do you mind me asking if your fractured vertebrae was due to osteoporosis? Did you fall? My osteopenia has now become osteoporosis and I’m wondering how careful I have to be with my bones. My GP says I would have to have a major fall to fracture a bone. I understand if you don’t want to answer. Thanks

[Danni54 in reply to Birdland]

Hi. My fracture is Osteoporosis which I have been told is wide spread....not that I'm as careful as I should be! I did fall on my back....hard....but didn't realise for a few months that I had fractured a vertebrae! I just thought that it was bruised. We had a beautiful dog at that time so I had to keep walking him ! Top priority! After a few months I felt a large, hard lump at the base of my spine, told my Dr. at the time, who wanted to focus on stomach problems that I was having! I kept asking for a DEXA Scan and after a few months, he agreed. The Radiographer sat with me and showed me 2 fractures ( since changed to 1 ! Weird !!) and other areas of Osteoporosis like my hip's,Pelvic bones etc. After that I had an MRI which was sent to Australia ( not enough Radiographer's at our hospital! ) had a phone call from my Dr. to say that it was spinal cancer. 5 days after that shock, another phone call, not cancer but Osteoporosis!! I have been put through hell by our medic's! Just have to plod on don't we!Please just be careful and try to avoid things that will contribute to you falling like ice , snow, mud etc. I don't over protect myself because if I stop doing things that will be bad for all of me ! Besides which I'm too stubborn! Stubborn is good but just be aware of certain situations. We have had to have grab rails put up on the stairs, outside doors and I now need a disabled bathroom. I, absolutely, detest being reliant on anybody but have to have a bit of help now but can't believe that I have ended up like this! Grrrrr!

Please take care and if you need any help or support then this is the place to come and I am here for you if you need to offload.

All the best x

[Birdland in reply to Danni54]

Thanks Danni. Yes, it's exasperating getting old. I've always been self reliant and very much of a doer. I'm 71 and recently lost full use of my hands from arthritis down where the thumb meets the wrist. Have to wear hand braces. There is a reason we have opposable thumbs. I took them for granted until I lost full use of them. Between arthritis and osteoporosis my skeletal system is shot. And with RLS and some other major issues I have, life can be very frustrating. Yes, GRRRRR!!!! But one must go forward. Wishing you the best.

[SueJohnson]

That is so horrible! I agree with Joolsg. Take legal action. That is apparently the only way they will act.

[Madlegs1]

Absolutely agree with the others.

The legal route is the only way to get changed.

We need a Steve Bannon to advocate for us!!!🚨🚨🚨🚨🚨

[Ticki]

I just wanted to tell you that you’re in my prayers, dear lady. There are some horrible stories and you’re one of them. Yes you strong but you need some extra help now. Prayers.❤️

[Danni54 in reply to Ticki]

Thank you so much for your support and prayers. Prayers from family, friends and people on the Lung Cancer Forum helped to get me through that scary time so it helps so much. Take care Ticki and you will be in my prayers. Love, Danni x

[Wordsworth99]

I feel for you. All the best, I hope you see a good neurologist soon. I wish you could find a better Dr also! Virtual hugs to you.