Be your own advocate

[Midnight-Blue]

With all the medications out there many physicians latch on to several (They have already researched & feel comfortable prescribing.) And as many of you have found out, your Doctor is reluctant to prescribe anything new.

Therefore, before your appointment do some research on the medication you want your physician to prescribe for you. Does not have to be technical but would have to convince that the medication has been (clinically) tested & where (+ results.) You have to sell your doctor on this product.3

No one is going to go “go to bat” for you! You must be your own Advocate. You can do this!i

[Shumbah]

I would like to add things I did to advocate for myself.

Write a bullet point summary of your journey

The suffering

The suicide thoughts

The medications and side effects

What you do or did for a living ( you are more than a RLS sufferer)

Success stories from people who are already on the medications you are wanting to try.

BOOK A DOUBLE APPOINTMENT!

Tell doctor you booked a double appointment to allow him/ her time to read the information you have brought.

The other thing I resorted to was going to the doctors twice a week.

I would simply say I was desperate

in the end my doctor tested up because he did not know how to help , by the time I had the solution myself he was more than happy to ensure I obtained my medication which is Buprenorphine.

I would like to add he was not only amazed that it worked he also loves the fact he hardly ever sees me know

only twice a year for my scripts.

The dripping tap gets heard.

[Madlegs1 in reply to Shumbah]

Brilliant!😎

[Madlegs1]

Excellent advice!

[Jelbea]

I do like your theory. I went to my GP armed with the necessary reports and even an email from Dr. B. My GP said "I will not listen to any comments from any American doctors" and he would not even stretch his hand out for the papers. I tried to explain these were from world experts but he would not budge. He offered me amitriptyline!!!!! That was about four years ago when I was taking 30 mg. codeine nightly and it was failing to give relief.

[Graham3196 in reply to Jelbea]

I hope you mean your "EX Doctor" People should be more willing to change doctors if they find their current GP is hopeless or uncooperative. I know someone whose doctor accused him of malingering. He gave the doc a good dressing down and told him to sue for the cost of the appointment. Needless to say he never heard from the doctor again. Not even an apology to say that perhaps he had misjudged the situation.

[Jelbea in reply to Graham3196]

Hello again Graham. I should have binned this GP four years ago. In September 2020 he decided I needed to see a haematologist. Apparently I had had a slightly high platelet count for 2 - 3 years (I was unaware of this). He told me not to worry that if I had something wrong with blood or bone marrow it was in the very early stages and with simple treatment could be kept at bay for a considerable time. At that time I had already suffered four blood clots at different times and obviously he should have been investigating the raised platelets sooner.Long story short he forgot to send in a request for the haematologist appointment. I found this out in March 2021 by telephoning the hospital and they told me they had not received a request. By the time I was seen in early May 2021 I was suffering blood cancer and had to start straight away on oral chemotherapy daily for life. My daughter telephoned him to ask for an explanation and he was very rude and shouted at her on the telephone and said that he had decided it was not urgent and he had not bothered to apply for the app.

I took it up by letter with the practice and have received an "apology" which is not worth the paper it was printed on. I am 79 years old and if I was younger I would have taken this all the way but I feel unable for the distress of an ongoing battle. Needless to say I am with another GP who unfortunately appears to be without empathy and very cold in her approach. I can pick them!!!!!!

Thanks for your interest and I would say to anyone who reads this to follow everything up and do not put too much trust in GPs whose only interest at present seems to be covid. I have been isolating since the first lock-down as I am in the top 6% of vulnerable patients. The good news is that the chemo appears to be working well at present.

Hope you are keeping well at present and nice to hear from you.

[Graham3196 in reply to Jelbea]

So sorry to hear that this GPs negligence has cost you so much. At our age it's probably best to decide to enjoy life rather then seeking revenge. He probably doesn't even understand that his hollow apology is worse than meaningless.

It sounds like your new GP is competent. I have to keep reminding myself that GPs have to deal with all kinds of tragedies as part of their life so they must try to separate their emotions from their practice. Perhaps she is an excellent doctor with a strained bedside manner but it would be nice to find a doctor who gave you a comfortable feeling as well as top class treatment.

Good luck to you.

[Joolsg]

Brilliant advice. It works if you have a decent doctor. My new GP was brilliant, listened to me and read the research papers I emailed. However, many doctors feel threatened by their patients knowing more about RLS than they do and can be obstructive. Which is a great shame.