UK Parkinson's Charity Research Projects

[Joolsg]

acrobat.adobe.com/id/urn:aa...

PD UK is spending Millions on various research projects related to Parkinson's Disease, including brain stimulation to stop ICD on dopamine agonists and a study by Prof. Ray Chaudhuri on Symprove, the probiotic I always recommend to anyone with stomach or excessive acid problems.

Imagine if everyone in the UK with RLS donated £10 or £20 towards RLS research??? We'd raise £10million instantly.

But for some reason, RLS patients aren't interested in joining RLS-UK or raising money in the same way as PD, MS and Cancer patients, supporters & charities raise money.

😔

[Huntingleroy]

I just dont understand why not ? Come on Rls sufferers lets be pro active !

[Danni54]

Dr.s aren't interested either Jools. I put poster's and information leaflets in both of our Surgeries, have been in both and they weren't put on the notice boards! I will speak to them about it but unfortunately, I was rushed to hospital with a suspected heart attack....it wasn't but I saw the Physio a couple of day's ago and the medic's are saying that I have referred pain from my 10 cm hernia and from my 2 vertebral wedge fracture's. The Physio has done an urgent referral for an Xray on my spine because the pain is worse....in fact everything is worse and she thinks the spine problem could be contributing to the RLS. There is a story to this !I'm on Buprenorphine tablet's now which have helped though I still get breakthrough. I had to ask to have a blood test to check my Ferritin level and my ..... Dr. has marked it as on the lower end of normal at 39 . I am still taking Ferrous Sulphate every other day but what do you think about that level? Do I speak to another Dr. on Wednesday about the level?

None of the medic's at our hospital could believe that my Dr. has left me for 3 year's with my fracture's with no check ups , no referrals to the Spine Specialist and no advice despite the fact that I have begged for help because the pain has become intolerable and had such a battle with the Pain Clinic to get the Buprenorphine tablet's which he has now taken credit for. I am speaking to another Dr. on Wednesday and will be speaking to him about why they haven't put the poster's up . The Physio seemed to understand how awful RLS is and how badly we suffer.

You are fighting so hard for all of us Jools. Please don't give up. Just because I go quiet sometimes (!) doesn't mean that I am ignoring RLS. I did join the Society and need to go back to get more poster's etc. which I will photocopy. Unfortunately, I have been and am quite ill and am a bit worried that the cancer is back. I think about everybody here all the time and do keep an eye on the Forum. Take care and I will be back! Love to everybody.

Love and hugs,

Danni. xx

[Mulberry100 in reply to Danni54]

Let’s do it!

Re your post, Jools, regarding completing and adding our own personal message, to our MP, my message to our local Tory candidate was to say how angry I am regarding the whole postcode lottery for prescribing. Coincidentally, the following day he was door knocking in our area and came to our door, I had the opportunity to let him have both barrels!! He is/was a practicing GP and, I have to say was very much on side, so I then went on to say how difficult it is for sufferers of RLS to make any headway with GPs on account of the fact they aren’t trained and appear to know diddly squat about the condition. He promised that he would read my email (I won’t hold my breath, but am hopeful) as soon as he could. I wasn’t sure how I was going to vote, but based on the fact he listened and certainly appeared interested, he has my vote regardless! Should he get elected I will certainly be on his doorstep.

There is nothing I want more than to see an end, to mine and everyone else, suffering this totally debilitating disease. If only everyone, who could, would just dig deep how amazing the outcome could be.

[Mulberry100 in reply to Danni54]

sorry Danni54, I mistakenly replied to you instead of Jools about her post. However, I am so sorry to hear how you are suffering. I had a very similar situation with misdiagnosed vertebrae fractures due to osteoporosis. I hope you start to feel better soon and the Buprenorphine is working well for you. Best wishes

[Joolsg in reply to Danni54]

I'm so sorry to hear of your spinal problems and the cancer worries. It's no fun getting older!The spinalissues will definitely be the cause of the RLS. Your serum ferritin is very low for RLS. But as I suspect your RLS is linked to the spinal issues, I don't think an iron infusion would make much difference. I could be wrong. You could ask for a referral for an iron infusion and keep taking the iron tablets every other day.And yes, we have to keep trying to educate the medical profession. Even though they keep ignoring us.

Stay strong & I hope the spinal fractures start to heal and the cancer results are neg.

[SueJohnson in reply to Danni54]

I am so sorry for all your problems and the inadequate care you got.

[Danni54 in reply to SueJohnson]

Thank you Sue. I would be a lot worse off if it hadn't been for your help and advice and the advice and support from Jools. I will ALWAYS be so grateful to you and I hope that you are alright. I told the Secretary at the Surgery that I wasn't at all happy that my Dr. had marked my Ferritin level of 39 as the lower end of normal but had not discussed this with me especially considering the information I had given them from the RLS Society. Not the Secretary 's fault but I'm so upset by my Dr.s mistakes and attitude. I will speak to another Dr. on Wednesday so we will see! I don't expect anything from medic's now! Too many mistakes have been made. Take care Sue and thank you again.

All the best,

Danni x

[Mulberry100]

I mistakenly have replied to Danni54 instead of you Joolsg, not sure how to correct, I’ll try to copy and paste

Re your post, Jools, regarding completing and adding our own personal message, to our MP, my message to our local Tory candidate was to say how angry I am regarding the whole postcode lottery for prescribing. Coincidentally, the following day he was door knocking in our area and came to our door, I had the opportunity to let him have both barrels!! He is/was a practicing GP and, I have to say was very much on side, so I then went on to say how difficult it is for sufferers of RLS to make any headway with GPs on account of the fact they aren’t trained and appear to know diddly squat about the condition. He promised that he would read my email (I won’t hold my breath, but am hopeful) as soon as he could. I wasn’t sure how I was going to vote, but based on the fact he listened and certainly appeared interested, he has my vote regardless! Should he get elected I will certainly be on his doorstep.

There is nothing I want more than to see an end, to mine and everyone else, suffering this totally debilitating disease. If only everyone, who could, would just dig deep how amazing the outcome could be.

[Joolsg in reply to Mulberry100]

The two candidates here say they will take it up after the GE. Mmmm. I do hope so.All we can do is keep chipping away & try to encourage all the FB groups to join forces with RLS-UK.

[Mulberry100 in reply to Joolsg]

I had the below email from our current MP this morning. As I said previously, he was very interested in what I had to say regarding post code lottery prescribing and showed interest in the need to have GPs RLS trained. Fingers crossed he gets elected and I will make contact again.

.Thanks Wendy. All noted and I'm supportive. I'd be happy to be a champion especially as I was once a neurology research registrar at Wessex Neurological Centre.

Best wishes,

Andrew

[amrob123 in reply to Mulberry100]

Good on you Mulberry100!

[Kakally]

Joolsg my money is here , ready for education, research etc etc.

We need and can’t seem to get front page news, big tv coverage or a mega celebrity happy to endorse our case

I guess the ICD documentary being made soon could boost RLS knowledge. However I don’t think it will necessarily 1.impact improving education about RLS. 2.discuss the horror that is augmentation or 3.expose the crimes of the drug companies and FDA (USA) and MHRA (UK) who should never have allowed the massive widespread prescribing of DAs back in the noughties and delaying some of the research into RLS by 10-20 years

[Joolsg in reply to Kakally]

I agree. I've written to Bob Mortimer & his agent but - no response. Next step is Parliament.

And the ongoing medical scandal of neurologists continuing to prescribe DAs even when a patient is clearly suffering augmentation and/or ICD is beyond comprehension.

[Kakally in reply to Joolsg]

Beyond comprehension!

Criminal

[ChrisColumbus]

Agree entirely.

(BTW the election candidates in my area are all going to fix the NHS, so at least that's taken care of - no need for anyone else to worry!)

[Joolsg in reply to ChrisColumbus]

🤣 Same here.

[antelope99]

Hi JoolsgI would certainly be willing to donate towards research for rls.

I would like to thank you for all your hard work that you are doing for us all.

I am already member of rls uk

Thanks again

[elsie1920]

Hi Joolsg,

I'm in Belgium, searching for an rls specialist to provide me with a long-acting opiate to get me through the night. All they will prescribe is co/codamol. 🙁

Anyway, in my online search, I came across this organization. Are you familiar with it?

eurlssg.org/index.php

[Joolsg in reply to elsie1920]

Yes. The Chair of RLS-UK, the UK charity that runs this help forum attends their conferences.Sadly, despite this guidance, obtaining opioids in the UK and Europe is still difficult.

I don't know of any doctors in Belgium who are up to date on RLS, sadly.

[elsie1920 in reply to Joolsg]

When I saw my neuro doc last week and mentioned methadone she looked at me like I was crazy! I even showed her the 'updated rls treatment algorithm'. She said she has never prescribed methadone or anything like that for rls. She is only willing to prescribe me the codeine. I just want something longer-acting that will get me through the night! I'm going to write to a doctor in the Netherlands who is on the EARLS list and ask him if he knows of anyone in Belgium. OK, oddly, I just checked the map now and he is gone! He was there two days ago. Fortunately I kept his name and email. It's worth a try.

Thanks Joolsg.😊

[LotteM in reply to elsie1920]

Hi Elsie, see my reply to your earlier request for a recommendation. Valeo (in Goes, Zeeland) has still very good and up-to-date specialists.

[elsie1920 in reply to LotteM]

I got it LotteM, thank you!😊