Neuro dr useless

[gypsy63]

Went to see a different neuro dr few weeks back he wouldn't listen to me and he told me that RLS is a muscle disorder nothing to do with anything else as there's not been enough study to say what course it he's sending me for electrode conductive test which I've had before he wouldn't listen that it won't show up anything about RLS any advise what to do ?

I'm not new on here for some reason wouldn't let me get on here although im using same name but had to use different email addy as t says there's no such email addy on my proper one gggrrr

[Kaarina Administrator]

Hi gypsy63,

I am sure I remember you from way back. Thank you for persevering to get back on the forum but I am sorry to read about your awful neuro appointment. What a total waste of time for you and I am sure you feel angry. If it was me, I would go back to my GP and ask to be referred to another neurologist who knows something about RLS.

Hopefully we may be able to help you on here if you wish to update us with what is going on with your RLS nowadays. We may also be able to assist in finding a neurologist that could help you.

[gypsy63 in reply to Kaarina]

Hi

didn't leave although I did have trouble getting on and had to use a different email addy as it wouldn't respond to my usual one saying it didn't exsist (spelt wrong im sure) strange thing is it let me use the same name on here usually would say someone already have it pick another name hmm... .

I was with another neuro but he wanted me to see this one as he's more qualified then him lol it's a joke my other one has tried everything going and im guessing he's ran out of options and so sent me to this quack .

he wants to do the electrode conductive test (we all know waste of time) he wouldn't listen when I said I had one done about 10 year ago if nothing comes of that then he wants send me to Sheffield to see someone not exactly sure who or what as all he kept on about was my back he soon pushed the rls along in one sentence and started talking about my back after he said the rls is a muscle disorder nothing to do with anything else lol , i'll keep everyone up dated on what happens with the quack lol .

[Kaarina Administrator in reply to gypsy63]

Hi again, gypsy63

Are you anywhere near Newcastle? Dr Kirstie Anderson runs the Regional Neurology Sleep Service with a clinical and research interest in all the sleep disorders with a special interest in RLS. She spoke at last year's RLS-UK AGM and was brilliant and is to speak again at this years AGM. Shaft1952, a forum member, recently had an appointment with her and was impressed.

[gypsy63 in reply to Kaarina]

Hi Kaarina

No not anywhere near Newcastle sadly she sounds great and with an understanding just wish they were all like her , sadly I couldn't go to anything like that where there's large crowd and listen to someone talk two reasons large crowd I get anxious and confused and I wouldn't hear someone talk on stage being hearing impaired one on one im fine long they're south from here anyone north I don't understand what thy say . I always take my step mam with me when I go to hospital appointments neuro dr is Indian and I can't lip read him and this quack I see he's from somewhere (don't know where) can't understand him either . Dr Kirstie Anderson does sound fab wish they had someone like her at every hospital the new one im seeing wants send me to Sheffield to see someone neither me nor mam understood what he said and to try some meds asked him to repeat several times think he got annoyed sigh.... wish dr's had a deaf awareness course .

sorry I've babbled on bad habit of mine .

x

[Kaarina Administrator in reply to gypsy63]

Hi gypsy63

An excellent idea to take your step mam with you to your hospital appointments. Two people listening in is always better than one. It is difficult to remember everything that is said even if you can hear and understand what they are saying. I agree it would be a good idea if doctors took a deaf awareness course.

[gypsy63 in reply to Kaarina]

yeah always good idea only problem is half the time she doesn't know whats been said lol nor does the nurse when asked if she could repeat hmm... I get moaned at if I ask them to repeat or they start losing their rag with me like its my fault ggrr

[annparas in reply to Kaarina]

They are not out there to cure us..just get a cut....we have to be more open minded and seak help elsewhere...

[annparas in reply to gypsy63]

Hate doctors with a passion..they are mostly there to make you worse and get a cut from big pharma....listen to your gut people we can heal ourselves...meds only makes things worse....meditate meditate...walk....eat well....is all we can do..and meditate again....there is a lot to be said about energy healing....they deal with neuro problems with great success...just need to find one who is legit....the battle is in our hands

[Madlegs1 in reply to gypsy63]

If you've had back surgery of any kind- that seems to be a major cause of rls.

If you can whittle down your medications to just opiates (if appropriate ) - that should help a lot.

[gypsy63 in reply to Madlegs1]

no back surgery much as they wanted to I said no I know I wouldn't be able to stand it being laid up i'd go nuts I've got a bulge pressing on my spinal cord along with other problems , on meds now but nowt works tried everything going so far unless something news come out .

[Hidden]

Well i will have to be polite on here but what i would like to say about that neuro i best not. Apart from he shouldnt even be a neuro if he thinks RLS is a muscle disorder. Go back to your doctor say what a idiot neuro he was. Someone on here might know of a GOOD neuro your doctor could refer you to depending on where you live. Good luck.

[gypsy63 in reply to Hidden]

I've replied above save me time re typing it but I hear you I was referred to this one by my other neuro dr as he ran out of options ,

thank you :o)

[flower-girl in reply to Hidden]

I printed off all the RLS information for practitioners from the RLS-UK website when I went to see my doctor and I requested an appointment to see Prof.Chaudhuri at Kings College Hospital London. We went to London by train twice to see him and now I have a telephone appointment once a year. He and his team were excellent.

[annparas in reply to flower-girl]

Excellent how...did he help?

[annparas in reply to Hidden]

They are all terrible have seen 2 and neither made sense...they both suggest in the end biopsies....but unsure why....DONT

[FLAME43]

that neurosurgeon, is a cruel and ill informed man. he would be well advised to read up on the studies that have been done by good people. His statement "there has not been enough studies" yet he decides its muscle disorder. go figure

[gypsy63 in reply to FLAME43]

I know he's a quack in my opinion I was referred by my other neuro dr because he ran out of options im hoping my other one will send me an appointment then I can tell him exactly what I think . I know more about RLS than the quack does since having it since I was 8yrs old .

[FLAME43 in reply to gypsy63]

you will find a lot of info here from very well informed people, just keep at it. I found Dihydrocodeine and 1 Prempexola and i get great relief, i suffered augmenting with 6 a day (Pexola) and got good advice to get off thenm and have never looked back. You must find someone who will read the fantastic posts on this site. Hope you get help soon

[gypsy63 in reply to FLAME43]

yeah I know have been a member on here for years now , im on gabapentin,clon???? forget spelling, zapain,tramadol not that any of them work I can't take the others like you suffered augmenting big time have tried them all now over the years.

im just at my whit end now I kind of know what I've got to do just needed some advise which we all need now and then even if we try work it out ourselves . I hope I do too and good luck to you too

[Hidden in reply to gypsy63]

Have you tried Targinact..? stronger than tramadol. and is approved to be used for RLS.

[gypsy63 in reply to Hidden]

nope not keen on taking tramadol not that thy touch me I always take one more than I should tramadol leave yukky taste in my mouth about hour after I've took them this new neuro wanted to stop all my meds ppfftt naff with that he can leave alone at least the gabapentin stop my neuralgia I got more or less every other month .

[Hidden in reply to gypsy63]

You can try the Targinact and leave off the Tramadol. Targinact is Oxycodone and another med in it which slips my mind what that is.

[gypsy63 in reply to Hidden]

I'll find out about it thank you , he did say he wanted me to try some meds but neither me nor my step mam understood what he said did ask loads of time for him to repeat but he got annoyed with us

[Kaarina Administrator in reply to gypsy63]

Gypsy63,

Perhaps if you are seeing him again, if you ask a question a few times and neither you not your step mam understand what he is saying, request that he writes it down.

[gypsy63 in reply to Kaarina]

you ever tried reading dr's handwriting lol looks like a spider gone through the ink and crawled across the paper lol I have asked couple times for them to write still non the wiser ...

[restlessinlondon in reply to gypsy63]

Perhaps you could ask for a professional lip speaker in the same way as requesting a BSL interpreter.

[gypsy63 in reply to restlessinlondon]

not so great with strangers only tend to understand folk that's closer to me hard one to explain although a bsl signer would be a good idea just me trying save money for nsh and social services if spelt right .

[restlessinlondon in reply to gypsy63]

If you sign then it would be far better to use an interpreter than come away not knowing what was said. I do hope you can get the help you need! 🙂

[Hidden in reply to gypsy63]

Here is some info on Targinact so you can read about it before any GP appointment or neuro appointment. Tell them to speak to you slowly, if they care, then they should respect your condition. netdoctor.co.uk/medicines/a...

[flower-girl in reply to Hidden]

Naloxone 🤗🤗

[flower-girl in reply to Hidden]

I take Targinact 10mg and also Lyrica (pregabalin) twice a day. It works wonderfully and I have primary painful RLS

[annparas in reply to FLAME43]

strong meds is not the answer...healing is...that is all doctors care about...

[Madlegs1]

Agree with all the others here. Also your frustration with accessing site. I use my phone all the time - but occasionally try from the laptop. HU want me to reregister etc- I couldn't be bothered- I don't have that much time.

Anyway- my main thing to say to ppl here is NOT to go to a neurologist ( unless you're guaranteed they are knowledgeable in rls).

Go to a sleep specialist instead. They understand much better the problems.

If you think about it- that's where Dr B comes from. Enuff sed.

Good vibrations to all fellow sufferers.

[gypsy63 in reply to Madlegs1]

not sure where we have a sleep clinic I know there's not one in my county most probs couple hours drive from here i'll have find out .

[AnneJende in reply to Madlegs1]

Yes. Sleep specialists are all that are used in most places in the U.S.

Which I thought was odd because at first I only had symptoms during the day...sadly now it's most nights too. But they know the most about it!

Good luck!

[gypsy63 in reply to AnneJende]

Im in the UK not so mch used as in the states I don't think, I have rls 24/7 have done for years but getting worst if that's possible .

Thank you

[AnneJende in reply to gypsy63]

The good news is that you seem to have far more educated patients on the subject....at least on this site! 😊

[Madlegs1 in reply to AnneJende]

Certainly , in Ireland, any research into rls is being carried out by sleep specialists. As far as I know.!

But so much research is hidden under bushels that it's hard to know what is actually being done.

[gypsy63 in reply to Madlegs1]

as you know the government in the uk are causing lost of cutbacks within the nhs hopefully once the votes gone through all that will change

[Madlegs1 in reply to gypsy63]

I understand that both our health systems are pretty chaotic- but not sure what drives research.

I suspect " big pharma" and" profit motive" are the major factors.

Probably , answers for Rls will derive from research into Parkinsonism as a side product.

Rls is so difficult to define - which is what makes it difficult to research.

Is there a Nobel prize in RLS cure? 😢😴

[gypsy63 in reply to Madlegs1]

I know the neuro dr I saw (first one) he's a dr for Parkinson's with an interest in RLS I took him loads of printout on RLS even gave him this site's addy so he could read what real sufferers talk about so he could learn more but he turned it all down telling me that all the printout were American dr's studies hmm.. not sure what he meant by that but ffrom what I hear America study more about RLS than they do in the UK .

yeah woud be great if someone won nobel prize for a cure of RLS then we could allhave a better life x

[Hidden in reply to gypsy63]

I dont think any research goes on in the UK for RLS, it does mostly come from the USA, and our doctors should read it,! If it wasnt for the research done across the pond we wouldnt know as much as we do now.

[gypsy63 in reply to Hidden]

I know that... I tried showing my last neuro dr but he wasn't interested telling me nooo don't want to read what American researchers are doing hmm.. even gave him this site addy told him to go read real peoples thoughts and pains .

[Eryl in reply to Madlegs1]

Medical research is often only published to non medical people after peer review, for safety reasons, so it can often take years for results to become generally available.

[lorrinet]

What an awful experience for you, but you're not alone. About 15 years ago I saw a neurologist privately and he insisted i was suffering from depression; he said the problem with my limbs was all in my mind. He used the example of 'hysterical blindness' and gave me Prozac! At the time I didn't even know that my condition was recognised or had a name. I found that out from a tiny article in the magazine 'Take A Break'. I went to my GP, who eventually sent me to a specialist at the hospital in High Wycombe. I don't know if there are many specialists in England as I had to travel almost 200 miles for my appointment. He asked me all the right questions and was obviously very knowledgable. He recommended opioids, which have been very successful for me.

I'm amazed that, 15 years later, there are still professionals who are so utterly ignorant of this awful condition. Good luck, hang in there.

[gypsy63 in reply to lorrinet]

I hear you on that same happened with me till I found out by searching on line by typing what I was feeling what my legs and arms were doing finding out about RLS and telling my gp at first he didn't know what I was on about then he must have researched it himself cos next time I saw him he wanted me see neuro dr only two gp's I see that understands rls my neuro drs wife is one gp at my dr's and she don't understands it lol , ohhhhhhhhhhhh I know many don't understand rls I wish they'd read up on it or even join sites like this one where there's real people with it they don't have to say owt but just read and learn .x

[Bkc1777]

What a lot of sh*t! Please fight for your rights! Do not put up with this crap!

Hope your GP will understand you next time you visit! Go with knowledge and don't let them mistreat you!

Good luck.

B. X

[Grammieof4]

I wouldn't even bother to go for a nerve conduction test. That doc needs to be told where/how to research RLS.

[gypsy63 in reply to Grammieof4]

I did say to him it'll be waste of time and money going for it as I went for one years ago didn't show owt up but he's most instistant (miss spelt) I go so im going to humour him think the only thing it will show is whats going on with my back 4 things going on there .

[AnneJende]

When any of you are fortunate enough to go to a sleep specialist are you actually given a sleep study? It can be very telling.

[Madlegs1 in reply to AnneJende]

You must be dreaming!😴

[gypsy63 in reply to Madlegs1]

hope everyones tucked up ...

[AnneJende in reply to Madlegs1]

I don't think I sleep long enough to dream! 😬

[gypsy63 in reply to AnneJende]

me neither lol gone 3am and I've not gone to bed yet very rare I go before 5am time it gets to 6am I don't bother going hate the thought anyone thinking im lazy if I go to bed and sleep couple so hours .

[AnneJende in reply to gypsy63]

I think for your own sake you need to put yourself first and get sleep when you can.

Remember I'm still talking smart because it's only a little after 9 pm here. But truthfully I'm riding my recumbent bicycle to get rid of my rls before I lay down!

Catch those Zzzz's where and when you can! 😊

[gypsy63 in reply to AnneJende]

strange thing is im hyper during the day even if I don't sleep busy busy then about 4pm to 8pm I struggle to keep awake even nodding while eating my tea (dinner) nodded off few times while ironing too anything that doesn't use much brain power I struggle with got rid of my mobile phone cos I couldn't text on it without nodding off lol . im wide awake now might go for a bath lol long I don't nod off in it wake up to freezing water bbbrrr at least no one here to wake up . Recumbent bicycle? i'll have to look that up lol

[AnneJende in reply to gypsy63]

What happens if you go to bed at 4:00? Pretend you have a job which forces you to sleep odd hours. Call it Survival Management!

[gypsy63 in reply to AnneJende]

I couldn't do it i'd only sleep an hour then not sleep again till the next day I've tried it I get your point x

[AnneJende in reply to gypsy63]

😕

[gypsy63 in reply to AnneJende]

funny ole game this rls lol either all or nothing no half way mark

[gypsy63 in reply to AnneJende]

ahhhh looked it up Recumbent bicycle lol good on you

[AnneJende in reply to gypsy63]

I especially recommend them for people with bad backs!

[gypsy63 in reply to AnneJende]

I do cycle in the summer good for the back but not good for rls lol or fibro

[AnneJende in reply to gypsy63]

That's a bummer. I can pace for hours or ride the bike for 20 minutes and the bout is over.

Hope you find some help somewhere.

[gypsy63 in reply to AnneJende]

when the weather gets warmer can bike for about 5 to 10 miles depending if the fields not being harvested too lol (dust not great for asthma) usually have someone with me riding bike behind let me know if owts coming behind can't look behind blumming hands follows head I end up on other side of the road lol all good fun

[AnneJende in reply to gypsy63]

Hahaha! I feel like I'd be doing that too! 🙃