Hi again.

[Whymelord]

Hi again,I'm having a form filled in for me by someone which requires my medical history. When I received the information from my gp surgery and read it I was astonished and fuming,while the information dated back a long time there was absolutely no information on RLS,nor Pramipexole which I had been prescribed for years. I will query this but cannot fathom what the h***k is the reason for this anyone had a similar experience please.

[pennygates]

The only thing I can relate is what happened to my daughter 6 years ago. She was misdiagnosed for two weeks by the GP and local hospital. In that time she had a perforated appendix with a huge abscess, which caused peritonitis. She had emergency surgery, and during that they left behind a 50 cm tube in her abdomen, sewed her up. She didn't recover well, but went back to work. She was in constant pain. 8 months later another emergency operation, much worse. The tube was removed. This time an open wound , a vacuum pump and months of recovery.In her medical notes at the surgery, all it said was 'perforated appendix', so her new GP had no idea of her horrendous history, or the lifelong appalling damage done to her. We were never given an explanation . The hospital conveniently lost her records, because she refused to be treated there again, and they said her records were 'lost in transit ' with the new hospital. No one seems to be accountable for these mishaps. BTW, they were investigated, but said the retained tube could not be accounted for, and it was described as a ,,,'non event'.

It's so difficult to take on the NHS , as they close ranks. But non of this was mentioned on her medical history. What the h***l ? The lesson learnt was, if it's not documented, it can't be questioned or challenged The less information the better. Sometimes omissions are just down to carelessness, someone forgot to update the file, sometimes you suspect more sinister reasons for this.

[Whymelord in reply to pennygates]

Hi Pennygates,O M G that's horrendous not to mention criminal but you are so right ,it's a mammoth task taking these people on,I'm really sorry to read this about your daughter and can only pray she will recover from this ordeal.

[pennygates in reply to Whymelord]

Thank you Whymelord, for your kind comments. I hope you can get to the bottom of why your records don't include details of pramipexole and RLS. It's appalling. Just feel we are given the run around in the hope that we will go away, and stop 'complaining'. Good luck and hope other members can shed some light on this.

[Whymelord in reply to pennygates]

You are so very welcome, yes your right,I've been attending my doctors for years because of this terrible syndrome, I have felt hopeless and have told gp's on several occasions how I was feeling suicidal at times,now I realise they were not listening to me ,just pushing medicines on me that were making me feel worse every day,the fact that they don't see RLS as a serious illness is proven to me now.i will be ringing my gp Monday ,cant wait for the explanation.

[pennygates in reply to Whymelord]

I hope you can speak to a more enlightened GP in the practice, and get some believable answers on Monday. You deserve that at the very least. Tell him again how this makes you feel. I took a note once into an appointment, telling the doctor this illness makes me feel suicidal at times. Not just because of the illness, but because the treatment, and lack of support, has made me feel worse. I handed it to him, saying I found it hard to say it. He really sat up. He had to keep and file the note. Best of luck Whymelord, for Monday.

[SueJohnson in reply to pennygates]

That's absolutely terrible !

[HeBgBgirl in reply to pennygates]

I am very sorry to read this about your daughter!! My advice for anyone that reads healthunlocked…. If you have any kind of surgery #1 if you have RLS make sure the surgeon and anesthesiologist know you have RLS so they give the correct anti nausea medication (I believe it’s called Zofran) bc if not given you can possibly have a post operative episode of RLS!! I would hate for anyone to go through that hell I went through! #2 Always get your surgical operative report!! This is a must. It tells you everything that was done from the moment you are put under anesthesia!! Invaluable as far as I’m concerned just in case!!

[pennygates in reply to HeBgBgirl]

Thank you for your kind words. That's good advice. I'm due for surgery later, waiting lists permitting for 2 hip replacements. After my last surgery for small bowel resection, they gave me anti nausea which was absolute hell. One treatment took three days to allow my legs to settle! I preferred the nausea. Trial and error. I've didn't realise I could be given a surgical operative report. I find anaesthetists are usually helpful and cooperative , so will ask . Thanks again.

[Cather]

I was on pramipexole for 25 years before I experienced augmentation. I could not increase the dose, since I was at .50mg, the highest does Johns Hopkins doctors (experts on rls) would give me. I began a series of "pramipexole withdrawals - getting off the meds for 2 weeks, then on again at a low dose. This worked for about 3 years, then stopped working. I got off for almost 4 weeks, then went on gabapentin. Best thing I did. The rls settled down: no symptoms in the day or the evening. Occasional symptoms at night, but mild, so that a little , very little, walk, settles my legs and allows me to get back to sleep. I am on only 600 mgs of gaba, a low dose. So for, so good. This has been working for about 8 months now. The doctors at Johns Hopkins hospital insisted that I get off pramipexole for no less than 2 weeks (more if possible, which I did) before I start the gaba. The longer I could stay off, the doctors said, the better I would do on the gaba. They were right. It was difficult, but so far so wonderful. Hope this helps.

[pennygates in reply to Cather]

Hi Cather, I admire you so much forgetting off pramipexole, so hard to do. How on earth did you do it? I'm afraid gabapentin didn't work for my RLS. Long story, but I can't take it. I came off pramipexole abruptly, on doctor's orders, which devastated me., especially as gabapentin did nothing for RL, and side effects horrendous from gaba, including falls, swollen legs, hospitalised for ten days, so no going back there. Pregablin was no better. I do have opiates for other conditions, so make use if them for RLS. However at the minute, nothing is working due to a Crohns flare up. I've not been able to cut pramipexole by more than 1 tablet, so on 3xper day, 0.088mg. Can't handle anymore right now. Thank you so much for your reply.