Kidney disease

[Whymelord]

Hi everyone,I recently had to obtain my medical records from my gp,at the very top of the list I read with horror that I have Chronic kidney disease stage 3 since the beginning of 2022 and no-one has ever informed me of this.I read about the strong connection with Kidney disease and RLS.im wondering now if I had been treated for this would it have maybe eased my horrible RLS,I'm ringing my gp tomorrow and feel the need to discuss this fact as I would like to hear the explanation as to why was I not told about the kidney disease and should I have need treatment, has anyone else had a similar experience.

[Madlegs1]

Shocking!

T'would scare the wee wee out of you!

Seriously, definitely requires a follow up.

Good luck.

[Whymelord in reply to Madlegs1]

Thankyou Madlegs1,I was really shocked when I looked at this, plus the fact they didn't inform me at the time.in fact the med. Report I received omitted any information regarding my RLS and the treatments I have received, strange,very strange.

[Madlegs1 in reply to Whymelord]

They don't know anything about RLS, therefore they just ignore it, and it will go away.

That's understandable,even if inexcusable.

The kidney diagnosis is criminal.

[SueJohnson]

That's terrible. Your doctor definitely should have notified you and started treating it. I would consider a law suit.

[SueJohnson]

By the way if you take magnesium and have kidney disease it can cause excessive magnesium in your blood.

[Whymelord in reply to SueJohnson]

Oh my Lord,yes Sue I have been taking Magnesium off and on for a while and haven't been feeling well apart from the RLS.i will certainly be inquiring into why on earth I was not told anything regarding my Kidneys.

[Camry2020 in reply to Whymelord]

What a shock for you! I’ve been told for years my kidneys were not ‘normal’ but nothing to worry about Also have acute pancreatitis which is ruining my life …..along with RLS. Someday they will find this is all related

[Nightwalker999]

Hi there, I've been told i have a kidney tumor, only told me a radiographer after the 3rd intensive exray 3 weeks ago My Dr hasn't informed me, I was told by the receptionist that the ex ray report has not been forwarded to my doctor. What's going on?I will insist what my diagnosis is and how bad it is asap.

We're in the same boat I think. No wonder the methadone is stopped working even at 10 mg X twice daily. Also been taking magnesium for a few years.

Please keep in touch. God been bless

[Whymelord in reply to Nightwalker999]

Whaaaat,oh sweet lord that's awful,if that's not negligence I don't know what is.I really hope and pray you get the necessary treatment and fast.I certainly will keep in touch,good luck to you.

[SueJohnson in reply to Nightwalker999]

From ncbi.nlm.nih.gov/pmc/articl... "Morphine and codeine are not recommended, because the accumulation of their metabolites may cause neurotoxic symptoms. Oxycodone and hydromorphone can be safely used"

Also see what I said about magnesium above.

[Whymelord in reply to SueJohnson]

Hi Sue,I take 2 co codamol every night before bed,are they not good either, yes I read what you said about magnesium, I have been taking it also,although my gp did not prescribe Magnesium he has been prescribing co codamol for years..and no doubt he is aware of the effects of that on kidneys.im at a loss as where to turn for support as it was almost dismissed today when I spoke to the doctor.thank you.

[Nightwalker999 in reply to SueJohnson]

Hi Sue, I saw my Neurologist yesterday, she has increased Methadone to 10mg x daily. Although I had already done so a week ago with no appreciative help so far.My additional meds are Ramipril, Keppa and Clopidogrel. Nothing else except vits. Vit c, D3, B complex, Iron bisglycinate 14mg , Folic acid, Cardio defence, Fullnesium, every other day

You mention magnesium is a problem so I'll stop it.

Are the others ok?.

Thank you for.your kindness and watch us all. XX

[SueJohnson in reply to Nightwalker999]

Keppra can actually help RLS - pubmed.ncbi.nlm.nih.gov/368... Ramipril should be OK. Not sure about Clopidogrel. Effindoe who you may remeber was a very knowledgeable person said it made RLS worse as did 1 other forum member but I haven't found anything that said so. A safe blood thinner is dipyridamole which can help RLS. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a... movementdisorders.onlinelib...

[Nightwalker999 in reply to SueJohnson]

Hi Sue, thank you so much for your detailed info. I’ll certainly look into Clopidogrel alternative etc. I’ll let you know how I get on. God bless, sweet dreams

[Nightwalker999 in reply to Nightwalker999]

Hi Sue, I’ve noticed my memory has deteriorated since restarted Keppra which was the reason I stopped taking it. Has anyone else found the same effect? Thank you Sue X

[Nightwalker999]

Hi sweetheart thank you for your support God bless X

[tomb378]

I too was diagnosed with stage 3 kidney disease, it turns out my kidney disease is far worse now caused by the medication I have been taking . My nephrologist reckons that the build up of plaque in my renal arterey has been exacerbated by my taking certain doctor prescribed medication and the one at the top in his opinion is Gabapentin, followed by tramadol and dihydro codiene. This cocktail has been slowley killing me, if I hadn't collapsed on a visit to my daughters and grandchildren it would have been fatal. I was rushed into Hull Royal Infirmary in May of this year where after many scans and tests they found that it was my kidneys that were at fault. I was transferred to my local hospital York and district and under my consultant after a couple more scans he said that I would need a procedure to fit stents into my renal arteries to open them up to let the blood flow freely. I don't want to frighten anyone but please check what medication you are on and ask your GP to check for this illness/ailment. I did not know how seriously ill I was because no one had joined up all the dots, I was suffering from short of breath, pains in my calf muscles and vertigo and the cream on the cake was a heart condition, now according to my consultant the kidneys were the cause of all these ailments and he reckons on a change of medication and the stent procedure I should be good to go and the other ailments will reduce significantly. I am now on the waiting list for the stent procedure.

[Nanpat]

Do you remember having a ct scan or renal ultrasound or similar for your kidneys??

Terrible you weren’t told results! My Gp sends me for lots of tests and I make a note to ask for results.

[Whymelord in reply to Nanpat]

Hi Nanpat,I have never been for any type of kidney tests,the only thing I know is when I would go to have check ups and had bloods taken,I was told that everything was "Satisfactory ",I understood that these checkups were age related and because I was on meds,ie.PB tablets.I rang my gp today and as per usual I was speaking to someone I only know by name,I enquired about the Kidney disease stage 3 and why I was not made aware of this.She paused and then skipped over it and said that most people over the age of 75 generally have some type of kidney disease, wow,didn't know that either,I then asked if I should have been receiving meds for it,she just gave me a flat NO.I have made an app.to have a checkup next week,maybe the blooming treatment nurse can tell me more.

[Nanpat in reply to Whymelord]

Well I certainly hope they can tell you more. I have had kidney problems myself picked up by kidney ultrasound, which is why I presumed same for you. Maybe your bloods were out? Your gfr for example, if so should be followed us with u/s.

Try not to worry until you know the extent of it…….and cause, good luck

[Nanpat in reply to Whymelord]

Ps. There are 5 stages, stage 3 is mild to moderate damage, probably a lot of older people would fit into this category? 😊

[Ticki]

oh my gosh, that is horrible news to read about having not been told personally and I hope you get to the bottom of it and I really pray there’s a better outcome than what it sounds like, you deserve much more than what you were given.💜

[Whymelord in reply to Ticki]

Hi Ticki,it's unbelievable how disrespectful and negligent that is,but sure it would be easier to get into jail these days than it is to get in to actually see a doctor🙄.

[dklohrey]

I have read that as we grow older we start to lose our sense of thirst. This makes it even more important to make a conscious effort to drink more water. I always, first thing, start out the day with a 12 oz glass of water.

[SueJohnson]

If you are still taking codeine see my reply to Nightwalker999

[HipHop1972]

Hello Whymelord. That’s really shocking and can understand you are feeling worried, I’ve found that surgeries don’t automatically notify one of test results and you have to chase them up. When you do your usually told that if anything was wrong that they would be informed. Well not in your case it seems.

Not heard about RLS causing kidney disease, I’m tested fairly regularly for kidney and liver function owing to a particular medication I take and results have always come back ok even though I’ve suffered RLS for 40 + years.

Hope your consultation with your GP goes well and that they can explain your condition as it may not be as bad as it sounds, but do explain what a shock it was having not previously been warned.

Take care and best wishes Hiphop1972

[SueJohnson in reply to HipHop1972]

RLS doesn't cause kidney disease but they often co-exist.

[HipHop1972 in reply to SueJohnson]

Thank you Sue for the clarification re RLS and Kidney Disease.

I had a consultation with my GP relating to an MRI scan undertaken on my head owing to balance issues and she asked me about my RLS. and I said that I had an appointment to see doctor Jose Thomas on the 27 September he runs a sleep clinic and also specialises in RLS, (thanks to Julsg) for the introduction. I’m having to pay privately as I don’t have medical insurance. He is based at the Spire Hospital, Cardiff, South Wales, UK. Anyway I mentioned iron infusions as a treatment he uses before prescribing medication in pill form. My GP looked up my blood test results going back over a period and said my last test showed my Ferrtin level to be 250 which she said was high. This was not previously brought to my attention but I do have an appointment for a full panel fasting blood test on 30 August so we’ll see what shows up there. I don’t take any iron supplements apart from what I get in my diet. My GP, well one within the practice, you hardly ever get to see the same one twice, so little continuity there, but she is very nice and does listen but like so many when you talk about RLS there is little feedback if any indicating to me that they have nothing to reply with, so it goes quiet. Anyway she is hopefully taking up the challenge with ordering the blood test.

So positive things are happening and in truth they need to as my life feels upside down and back to front as my fellow Augmenting colleagues wil know only to well so back to bed and hopefully sleep 💤 hopefully for a few hours.

Best wishes Hiphop1972

[Whymelord in reply to HipHop1972]

Hi HipHop1972,I have high blood pressure so I take 2 meds plus Atorvastatin for cholesterol, I was getting checkups pretty regularly before Covid,I would have had bloods tested etc.when I would ring for results I was told everything was "Satisfactory "so perhaps the gp didn't feel the need to discuss anything specifically, certainly never mentioned kidney disease.Im going for a checkup next week,at my request so I will be looking for answers from anyone who can help.good luck to you.

[HipHop1972 in reply to Whymelord]

Hello again Whymelord. I’ve just understood your title. I think we all ask the same question whether you have a religious faith of any denomination or not. I usually answer why not me, I’m ordinary no different from anyone else, but i am truly thankful that I still have life no matter how hard that life is and I do understand the terrible terrible struggles people have with mental health due to RLS and the feeling that they are in the wilderness with no direction.

Whymelord, I apologise if I misinterpreted your title which prompted this sermon 🤣😂 heaven knows I do get carried away at times but it just goes to show that RLS makes me as loopy as the rest of you.

I truly do hope that your appointment with your doctor can put your mind at rest

Hiphop1972 🥳

[Calm2]

Hi, the almost exact same thing has happened with me. I was having a conversation regarding meds with my GP when out of nowhere he said “you can’t take those because of your chronic kidney disease!?” Why didn’t I know anything about that? Why only now am I being told this? I do know some heart meds can be bad for the kidneys which is why yearly checks are done. Nothing else was said, I asked how this suddenly has just come to light? Still trying to understand. I did have another blood test and the results came back as normal? I cannot get to the bottom of this, normal for CKD or normal as in just plain normal???