Hope neurologist is right or I'm done.Well the neurologist said it is not restless legs but nerve damage. He flatly refused to give me subutex without scientific proof, I told him that I did and to ring your dr also, he said he is not looking at someone's sob letter. He has taken me off temgesic as well and informed the other drs looking after me not to put me on it again.....he said there is no proof that this works on rls...again I said there is lots of proof but he just ignored me .he has prescribed tegretol 100mgs 3 times a day for nerve damage...I'm going to take it as I only have this or ending my suffering. Maybe it will work , I don't know, I pray that he may be right and it is nerve damage not restless legs as it is terrifying to think of the future with no rest or joy.
Hope neuro is right : Hope neurologist... - Restless Legs Syn...
Hope neuro is right
The only good news is tegretol helps RLS. You may have both nerve damage and RLS.
The way RLS is diagnosed is if you meet the following conditions. All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition. I am no expert on nerve damage but I doubt it would meet these conditions.
Can you change doctors? Any doctor that refuses to listen to you and acts like that is not one you want.
And opioids are commonly used for nerve damage.
Oh I hope it works for rls then I have heard some people are on tegretol for restless legs as well, I'm starting to feel a bit sick and shaky and my leg is pulling and jerking ...I am so miserable, I just want to d*e...don't know if I can stand this anymore. I hope a miracle happens and these work for restless legs. I have an apt with pain specialist on 24th...the problem is the neurologist has sent a letter to him as well saying no subutex or temgesic...hopefully the pain specialist will make his own decision
I would have been very surprised had the neurologist prescribed subutex off the bat. In my experience, it's helpful to build a relationship with the GP or specialist before asking for Schedule 8 drugs. There are people who go doctor shopping to procure drugs like subutex, Temgesic etc. and doctors can get into a lot of trouble if they fall foul of the guidelines. Hopefully the Tegretol works for you.
My problem is my last neurologist said there is nothing more he can do so I had to find another, then my gp retired and I meet my new gp on the 15th....everyone doesn't know me
In Australia, some people find sleep specialists more helpful than neurologists but i guess it mainly depends on the actual person you get.
Sorry, but the neurologist sounds like an absolute b*****d !!(Who was it btw, so I can avoid them !)
I imagine you are crying in frustration atm.What people don't get is in Tasmania, we are VERY restricted in who we can see here.
We can't 'change' doctors very easily and if we do manage that, our records from our previous doctor often follow us, so if one doctor is concerned about medication, that note will follow you around, and on that basis, some doctors will not take you as a patient.
They are all utterly, completely paranoid about opiates, with the exception being a managed opiate addict (methadone) which HAS to be taken at a particular pharmacy...so not in the evenings, when it could actually help, OR have terminal cancer.
That's it.
And no, we cannot 'demand' iron transfusions. They are not done, except in a hospital for anaemia, at least as far as I am aware. Forget it.
Bringing in 'print outs,', "algorithms", 'research ' will only result in scorn.
Advocating for ourselves only results in being labelled as " one of Those patients "
Might be a bit different if we had $100 K or so to spare, but most of us haven't.
I am feeling so angry and outraged for you at the moment
Dr de souza in launceston ....he was really angry I had bought evidence and wanted to do the best for myself. I feel a bit sick at the moment starting the tegretol.....it hasn't kicked in yet and I'm not allowed to take anything else with it...going to go through horrendous withdrawal off temgesic....so sad and scared , just want to die and be done with it
Now I can't get a repeat of temgesic if this doesn't work because the gp will be too scared to go against neurologist
Have hope, as you will be seeing a new gp soon and a pain specialist...who may understand.Dr De S. Can only recommend no temgesic: but he hasn't the authority to enforce his opinion !As far as I am aware, only the pharmaceutical board or APHRA has the authority to prevent you from having opiates.
It is very disappointing to hear that you can go through withdrawal... medication should be tapered off, not stopped abruptly !
I have 10 mg of valium, per week for panic attacks..and it is hard enough to even get that.
I was looking into the VAD laws in Tasmania only last week as I want some quality of life....not just an existance, so I am hearing you !!
Please keep in contact
Please don't feel you want to die. There is hope even if you can't see it and we are all here to help you.
can you take someone with you who will speak out on your behalf . You must really get new doctor to understand just how dreadful you feel. One doctor I had did not listen until my daughter said I felt suicidal. A lot of us on this site have gone through what you are feeling at the moment so we understand.
My husband said to this neuro that I was suicidal and he didn't give a shit......he said oh well go and see your gp for mental health referrel
K+K, so you gave Dr De Souza copies of the scientific papers that show opiates are a well accepted treatment for RLS and he refused to read them and denied there was evidence? Then told your GP not to give you the temgesic? Maybe you should report him to Ahpra. This is why I am going to set up a stand alone RLS clinic.
I think every doctor in Tasmania would do and say exactly the same thing as Dr De S, to be completely honest....But they DO love their Seroquel.
If youbset up and RLS clinic, count me in !
Edit: they won't waste the money ordering MRI imaging - not for over 60's....take nurofen/ panadol for the rest of your life, to hell with your liver/stomach/kidneys....as long as you aren't addicted. It's fine !!!
Seroquel - great for RLS, causing it that is.
Oh yes.....they love it here !
Getting late in Tassi!
It's the RLS, keeping me awake !
I went to bed though. Yes, investigating the opiate issue here in Australia. I can prescribe, short term for pain lots of types of opiates. Prescribing for addiction is more complicated. Need to discuss with a pharmacist or the Chief Pharmacist of the state to get how it will work in practice for RLS.
Please do carefully read Sue's e-mail below because she has stated very very succinctly and accurately exactly what RLS feels like - each and every point. If all those points describe what you have, then you can be pretty sure you have RLS.
Don’t lose hope anyone. I know that place, especially in the last 10 years as I’ve got older (now 66) and RLS has gone to the extreme of the assessed scale (Sue J’s tests). 5 years ago my beloved wife died of cancer. I have tried just about everything talked about on this site- some things worked for a short while, others not at all. And now I also have Spinal Stenosis- painful, mobility limited. BUT, and Sue and others may remember this, I was on Ropinirole- it worked a bit. Then I took the advice on this site, went to my unhelpful GP with the Mayo Clinic report. She is now something of a RLS expert (she could be bothered to educate herself) and I am on Gabapentin- it doesn’t work one hundred percent of the time, but enough to keep me sane. Keep on pushing your docs- send them the Mayo information- in the end they will shift attitudes. How do I know this? For 45 years I was a trade Union officer, and specialised in the more difficult discrimination cases- hard nosed employers were much like your person, they didn’t want to listen or they arrogantly thought they were right always. Just keep going- they crack in the end. Please don’t lose hope. You will get there.
please KandK listen to everyone above - things may seem grim now but they will improve - we have all been where you are - I agree that your new gp needs to understand how bad you feel, how tortuous your legs are and that you are suicidal. Can you film yourself at night when you are in agony and / or walking about? And keep a diary showing how often you are experiencing this torture. Also can someone else communicate how things are for you? Someone mentioned a daughter?
My Dr was similar to this consultant.,It has taken me three years to get some improvement - three years of second opinions, private appointments, withdrawals, dark times - including falling and breaking my foot after four days and nights of no sleep.( I still can’t walk properly on that leg 9 months later.)
My Dr is now civil with me and has just written a prescription for oral buprenorphine when he had flatly refused to give me any opioids and initially wouldn’t give me pregabalin.
Oral buprenorphine doesn’t seem to be for me the cure all medicine that it is for some but it is a lot better than the medications I have been on before so I am grateful that he is now working with me.
My message here is don’t give up. Hopefully your new Dr will be less ignorant especially if they understand how desperate you are feeling.
Please let us all know how you get on - Dawn x
No no no. Really if You have RLS Tegretol will not help. Very oldfashion trick to even try it! Ofcourse no one gives You Temgesic or Subutex for RLS. Opioids are the last option. You have to find a neurologist who knows RLS and checks bloodwork first, makeas a proper diagnose and propably if not iron infusion is needed Gabapentin or Pramipexol gives You relief.
Tegretol can possibly help RLS per the RLS foundation and there are also articles to that effect. But please don't recommend pramipexole as you of all people know it causes augmentation.
I have used Sifrol since 2016 with no agumentation. I get side effects from it but it helps to calm feet, not everyone gets agumentation. My current dose is 0,18 mg, I take half tbl. and half with 2 hours pause. Othervise my breathing gets difficult, airways swallow. Also Gabapentin 400 mg with Sifrol. I got and tried Tegretol 13 yrs ago. Really made also days very difficult. Told about that to my neurologist and he says it's not up to date treatment for severe RLS. Many doctors may think and try whatever, who have no clue of what RLS is. Really happy if someone gets more help of Tegretol than side effects and trouble.
Sorry - I see it is the side effects, not augmentation.
True not everyone gets augmentation but up to 70% do, so if one is not already on it, it would be foolish to start and take that risk, especially if one is on it for a long while the dopamine receptors may be damaged so that gabapentin and pregabalin won't work.
My sister has been on sifrol for over 15 years and no augmentation. I pray it keeps working for her
This is exactly the kind of story that concerns me.
Not only is it extremely difficult/impossible to find a doctor in Australia who is even willing to look at evidence let alone prescribe an opiate such as Temgesic for RLS but then once you finally find a doctor who is willing they retire and leave you to the wolves again.
This is a worry for me too around the southern Gold Coast region of Australia.
I’m tired of RLS sufferers being punished by the ignorance of doctors who put us in the same boat as drug addicts. We’re not irresponsible addicts… we just want a good night’s sleep like everyone else.
So angry and sorry you have to go through this.
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