At last a phone call

[bedith6]

6 weeks ago I wrote to my g.p. as it’s impossible to see them at the moment. I explained in the letter that the Tramadol was no longer working and the extreme symptoms which I am going through at the moment I explained just how I felt and asked for Temgesic to replace the Tramadol there was a flat no to that. So a week ago I wrote a further letter asking for Targinact . Today I had a phone call all very ambiguous apart from another flat no to the Targinact. I pointed out that it was licensed in u.k for severe RlS which she admitted she didn’t know. I told her which web site to look at and the upshot is she will look at the website and let me know or phone again on June 8th or see if an appointment can be made with a neurologist I really don’t think I can take much more of this conditions, I,m 90 for God’s sake and just can’t constantly be on my feet day and night with no rest or sleep. She said she understood but to my mind just hasn’t done much and as I said it has taken 6 weeks to get this far. Sorry for the long rant it’s only this forum that keeps me sane to know others have similar problems

[Madlegs1]

So sorry to hear that story. It's so sad that people of that age are treated so shamefully.All I can do is hope you are able to succeed in getting success in your admirable activity.

It is an extraordinary feature of this site that such misfeasance/ malfeasance goes unpunished by our vocally militant members. If I lived near you, I would be down to the butchers to nick a horse's head.

And deliver it to - you know where! 😎🤠

All the very best, Bedith. Keep up the good work and keep strong.

There are many thinking of you on this site.

Cheers.

[Doings]

You could report your doctor for mis management and dereliction of duty for your well being. The impact on your daily life mentally cannot be ignored.

My gp is useless as well and by the sound of it so are the majority.

Good luck.

[Jumpey]

I am.so sorry you have been so mistreated. I also think you should not have to wait so so for a reply. Could you get an appointment with another doctor?I take Tramadol too.And periodically it stops working due to tolerance. After a month's holiday it starts working again.

I hope you get the Targinet or something efficacious. Good luck.x

[bedith6 in reply to Jumpey]

I do admire you for coming off the Tramadol for a month as a break. I know that I should do that but I don’t think I’m strong enough mentally or physically to go through a months withdrawal. How did you feel during that time and what were the symptoms you experienced?

[Jumpey in reply to bedith6]

Hi.I didn't get withdrawals at all because I only take tramadol 6 nights a week.I do this deliberately because I know I'm going to need to holiday from time to time.I am exhausted physically and mentally when I do this.But I hang on in there because I know it's only temporary .I'm lucky I am retired so don't need to worry about getting up for work.

[bedith6 in reply to Jumpey]

Do you suffer RLS badly on the night you don’t take it?

[Jumpey in reply to bedith6]

Yes I do.I tried Kratom successfully for a while but then it caused oesophagal pain so had to stop.

[rkatt]

I'm disgusted and angry on your behalf. This is malpractice with a capital M. Can you try to get Temgesic privately? It involves getting a telephone appointment with a neurologist and also paying a pharmacist to source the drug and deliver. Expensive, I know. If not, could you send copies of posts by Shumbah and others from Health Unlocked to this apology for a doctor? If you know a lawyer, I'd get her to send a letter threatening legal action. Also float to your GP that you're thinking of taking out a grievance. They absolutely hate that. Thing is, people all over the UK and also other parts of the world get Temgesic, while in the same areas others don't. It's mad. In the meantime I hope you get Targinact and that it helps. I was on a huge dose and it didn't. A micro dose of Temgesic has changed my life. Even so, my medical practice almost follow me to the chemist with loaded machine guns to make sure I don't sell it to the mafia. It's as unexciting as milk! Who'd want it for a good night out when all it does is help you sleep without convulsions?

[bedith6 in reply to rkatt]

Thanks for your reply but I think the expense would be impossible for me. Once taking it you have to then pay for it every month so although I might be able to do it once I couldn’t continue My G.P said the reason I couldn’t have Temgesic was that she was not allowed to prescribe it and as for the Targinact she said she was not comfortable prescribing it to me,,

[LotteM in reply to bedith6]

"Comfortable"??!! What a weird way of phrasing her unwillingness to prescribe Targinact. Dis you ask why she didn't geel comfortable? And did you mention that you never, literally never are "comfortable"? And at your age that should be a rather important aspect to consider. Although I can image you were too stunned to ask such pointed questions. I think I would have been.

Why not contact her again and ask for a clarification about the Targinact? It ia mentioned in te NICE guidelines and licensed for RLS. So why not?

I got angry on your behalf. Not helpful, I know. And I hate to suggest something that involves retracing your steps and confronting her again. If only it helps and that the Targinact will help you.

I wish I could be of better help.

[Poe7 in reply to bedith6]

Hi, me again, lol. Im in the US so I'm not sure it works there. But I ended up going to a Neurologist at a University hospital about 2 hours away from me. I do not have insurance so I have to pay for all appointments and needs myself. Because of the kind of hospital it is I get a discount. Instead of my appointments being over $800 per visit I pay about $140.00. Which is still a lot but way better. And in only have$_ to see her once ever 3 months so that's a lot better. And thankfully the methadone is a lot less expensive than the tramadol. I was paying about &80.00 a month for the Tramadol and the Methadone is only $18.00 a month.

[Noddedoffagain]

I was prescribed Targinact by my consultant- he wrote a prescription for one month which I got from the hospital pharmacy. I was then told to get my repeat prescription from my doctor. My doctor is supportive in so much he lets me take control as he feels that I now know more about RLS than him. He refused to prescribe it saying that he was not allowed to. He had checked the guidelines and he was correct. The consultant did give me a second month but he too had been advised that he should wean all his patients off it and not give it to new patients. I challenged this a reach level but the outcome was -No Targinact. Last week I was given an iron infusion & to date there has been no improvement.

[bedith6]

Same for me I cannot get Temgesic or Targinact. I was also refused an iron infusion despite sending all the written science behind it to the gp. I think the only word She knows is no.

[Poe7]

I was on tramadol for 12 years. I got up to 400mg a day because my doctor's didn't know it was causing augmentation so just kept upping the dose. I finally was the one who learned about augmentation and after several doctors over a few years who wouldn't prescribe anything stronger than the tramadol I finally found my neurologist who is now prescribing me Methadone. It is one of the treatments recommended for tramadol augmentation.

It took several weeks of titrating up on the Methadone and down on the tramadol but I'm now 98% symptom free. And it started working the very first day. I'm now on a maintenance dose of 5mg twice a day. I am sleeping through the night now and that's bend amazing. I never realized how much not sleeping more that 2 hours at a time all night was effecting me. And the severe RLS was getting to the point where I just available miserable and depressed all the time.

Since she won't prescribe Temgesic maybe she will consider Methadone.

I hope something gives you some son. I'm sorry your going through this.

Oh, I forgot to mention the RLS was getting so bad because about 2 years ago I bet slowly lowered my dude from 400mg to 200mg a day. It definitely was not enough to completely control the RLS and it just kept getting worse.