Uk neurologists: Hi everyone Sorry... - Restless Legs Syn...

Restless Legs Syndrome
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Uk neurologists

Nottsali
Nottsali

Hi everyone

Sorry, long post but at my wits end!, Have had symptoms since June, 24/7, never comfy when sitting/lying and the tingling, pulling in legs drives me nuts. I have particular problems with tightness/pulling in thighs when I first wake up and for about an hour after I get up, which I don't think is typical of rls though? I paid to see a neuro in July who wasn't sure it was rls and suggested mri and nerve conduction studies, but a bit pricey so I waited for my nhs appt in September.

First gp wanted me to take ropinirole and said my ferritin was normal (52), second one acknowledged it needed to be higher so advised iron tablets, but also suggested ropinirole, said he couldn't prescribe gabapentin. Nhs consultant wasn't a good experience, very short appointment, fired lots of questions at me rather then letting me tell him how it was, although he did ask gp to prescribe gaba (to take "as needed") rather than rop because of possible augmentation/icd, and did send me for mri. I asked him about the ferritin and he said he wasn't a haematologist and I should talk to my gp! In the meantime ferritin up to 53 after 2 months iron tabs. Now on liquid iron, gp said no IV iron for rls on nhs. Mri showed degenerative disc disease (am 56 with some osteoarthritis) and consultant said "it could well be the cause of her symtoms" and discharged me. So now I'm not sure what to do. I am hoping getting my fertitin up will help, but haven't started the gaba yet, waiting for Christmas hols when I don't have to drive to work in case of side effects. Am also having acupuncture which has helped me cope better but not alleviated symptoms much.

I suppose I'm asking whether it is worth paying for another consultant who actually understands rls so I can get a firmer diagnosis and more help with dosage? I did find a Parkinson's specialist in Derby (i'm in Nottingham) who seemed sympathetic when I emailed. Or just take the gaba and hope for the best?

Thanks everyone

Alison

24 Replies
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One thing you could try straight away that wouldn't cost you anything is to go on a low carb diet, or what's known as a ketogenic diet. There are many variations on this, like the paleo diet, the HFLC diet, the FODMAP diet etc. but the main point is that you need to give up sweet foods and foods high in refined carbs which would raise your blood sugar, and increasing your exercise to burn it off. Especially beware of eating high carb snacks in late in the evening. If you see a difference in the first couple of weeks, then make the diet a habit. If it doesn't work then you wont have lost anything except maybe a few lbs. If it does work then continue and maybe you'll start to see patterns of when you've eaten and when rls is at its worst. It's usually about half an hour after you've eaten something which is a trigger. Then it's a matter of keeping a food diary, scratching your head, and reading packet labels (especially note additives like sorbates E20*).

Nottsali
Nottsali
in reply to Eryl

Thanks, I might give that a go after Christmas

Hidden
Hidden

Hi Alison, sounds like you are having a tough time. Are you receiving any treatment for your disc disease (other than acupuncture)? Could you try the gabapentin the night before a non-working day just to see how it effects you? My NHS consultant doesn't want to give me gabapentin, which is odd as she gave me pregabalin which has much worse side effects. I know several people who have gaba prescribed by GPs for muscle pain etc, so I can't figure out why they don't want to give it for RLS. Possibly because the NHS seems to believe - blindly - that dopamine is the answer.

The tightness in your thighs in the morning could be that you have PLMS as well as RLS. You could ask for an overnight sleep study which will confirm that - because if it isn't PLMS that would possibly suggest the cause is something else. There is a sleep clinic at Leicester General Hospital which I go to. Not great but possibly better than neurology.

Your ferritin is way too low by RLS standards but fixing ferritin doesn't always help. It didn't for me and I paid privately for an infusion (circa £600 at the Iron Clinic in London) because, as you say, the NHS won't pay for it. I don't regret it though, as if I had waited for months my ferritin to rise on iron tablets and then found it wasn't the cause of my PLMS that time would have been wasted. I would happily pay to see an expert (not because I can afford it but because I am desperate) but I haven't heard of anyone in the UK that is worth paying to see. I wouldn't be convinced about seeing a Parkinsons specialist because there is no established link between Parkinsons and RLS, and they will probably focus on dopamine which may not be right for you.

Sorry, not a very positive response but I hope it is of some help!

Nottsali
Nottsali
in reply to Hidden

Thanks Tattiana, that's really really helpful. I had looked at the iron clinic but wasn't sure if they would do it for rls, was going to email them. I'm due to have another ferritin check in the new year so will see after that. I will talk to my gp about the sleep clinic too, I don't think I have PLMS, not according to a friend who I shared a bunk with on my last sailing trip, but I'm single at the moment (just as well really!) so who knows what's going on when I'm asleep! I do wake up a lot transiently to readjust my position.

I'm not having any treatment for my disc disease, I have no back pain and it came to light on the mri so may be a red herring and the result of middle age, I'm going to ask my gp on Thursday. I'm a but P****d off to say the least that the consultant discharged me without any follow up discussion. Not an unusual situation though, by the sound of it.

Thanks again for the reply, it really helps to hear other people's situations.

Alison

marsha2306
marsha2306
in reply to Hidden

Hmmm. Why do you say NHS believes blindly that dopamine is the answer. You don’t think it has anything to do with it? It’s been proven that it does. Gabapentin is generally prescribed for nerve, not muscle pain, so there me a lot of GPs out there not knowing what they’re doing. I do agree that her ferritin is way too low for someone with RLS; it should be over 100, but I think from the symptoms there’s more going on than “just” RLS.

Hidden
Hidden
in reply to marsha2306

I may have misworded my comment. What I meant was that (in my experience) the NHS seems to think dopamine is the ONLY answer and will fix RLS. It doesn't for everyone (me included) and it is still only a hypothesis, not a fact, that low dopamine is the cause.

Hi Alison

I think you have to look back to June and ask yourself if you have done anything differently or are taking anything that may have caused the RLS. It is unusual for it just to start! Read the list of medications to avoid on the link below, there may be a clue there.

rls-uk.org/treatment/

Pam

Nottsali, there is quite a lot here that could be something other than WED/RLS.

You said 'since June'. What happened before June? Did this come on suddenly?

Also, your symptoms seem to be worse in the morning, which is when most of us get some relief.

There is a possibility that it is not WED/RLS, and the way to find out for sure is to use a dopamine agonist for a day or two, because pramipexole/ropinirole etcetera are diagnostic for this condition. If it works, you have RLS, if it gives no relief then you don't.

Nottsali
Nottsali
in reply to Parminter

Thanks, I might suggest that to my gp

Hi there

I think we have/ or still going a bit crazy being in a world of 'what else can I try' my sister is a neurologist but in research although she does a bit of work on RSL and suggested I get a appointment with a movement neurologist. Being on the other side of the world I can't suggest who I have a appointment with but it might be worth looking into. I have been on Lyrica (gaba) for sometime now. I think it helps

but can't pin point how as have so many issues. Sleep specialist who diagnosed me, RSL,put me on sifrol but after hearing on here how hard it is to get off I stopped it last night( we have different names for drugs so I think it's also pramizole?).

Good luck and hope you get some answers soon. 🎄🎅🏼🙏🏼

Hi, Poppyrose, Lyric is pregabalin, not gabapentin. It's related, but not the same, and can have different side effects. Sifrol is indeed pramipexole. It is not the devil incarnate, as one might conclude from many comments here. (That's true only in high dosages.) Rather, it is a very effective and safe tool to have in our toolkit, so long as the dosage is kept low.

. (0.125 or 0.088 is pretty safe, and definitely no more than twice that. Even half that if you can.) I use a low dose, 2 mg., of the Neupro patch (another dopamine agonist), plus gabapentin. This combination is very effective for me, with no augmentation.

Thank yoy for replying. That's interesting about the combination, I've read about that on here, principle that 2 drugs at low doses is effective with fewer side effects?

May I ask what dose gabapentin you are on, and if you have many side effects?

Thanks

I take 1800 mg gabapentin along with the 2 mg Neupro patch. I have also been getting iron infusions to boost my ferritin levels, which has helped noticeably. I hope that in time the iron will allow me to reduce the gabapentin. But even at that level, I find the side effects from gabapentin o be pretty mild - maybe a bit of grogginess in the morning. I tried switching to pregabalin for a while last Summer, but for me the side effects were worse (a sort of tippiness, like I felt I was catching myself before falling over, and some morning blurry vision). But we're all different when it comes to side efffects.

thanks the drugs have so many names I loose track sometimes.

I take sifrol 0.25mg x4 at night (well I was) that seems higher than your recommendation but was prescribed by my sleep specialist?

It will be interesting to see what the neurologist suggest when I eventually see him.

He has a 8 month waiting list I have just found out:(

The maximum daily dose of pramipexole recommended by most knowledgeable RLS experts used to be 0.5 mg. They've since reduced that to 0.25 mg daily, in order to reduce the chance of developing augmentation.

As for your neurologist: you might try calling his/her office from time to time to see if they have a cancellation. That strategy has worked for me several times with my neurologist. Good luck.

Thank you I shall certaining call the office from time to time.

I think also I read on here 'somewhere' in Australia we have different limits to meds but then again who knows. I shall see what the neurologist says.

Good wishes for the holiday season. We are in summer now 35c today ☀️🎄🎅🏼🙏🏼

Nottsali
Nottsali
in reply to Poppyrose1

Thank you, I hope you get more answers soon too

Think RLS tends to start earlier than this so you are right to get checked out in case there is another cause. However, don't think medication is always the answer as most drugs have side effects. I have tried copper bracelets at night, Valerian and listening with headphones to music in the evenings with some success. Like the idea of RLS being connected with diet but mine started with pregnancy and is inherited....Hope you get some relief and answers.

Nottsali
Nottsali
in reply to Allyp69

Thank you

Poppyrose1
Poppyrose1
in reply to Nottsali

Forgot to say last few nights I have been listening to some"pillowtalk' app and its just relaxing music that I put my phone under the pillow and listen to going off to sleep and certainly has calmed the mind.

Hi Alison, so sorry you are having a awful time. Most of the folks on this forum would not be here if we were not having an awful time although some have found something that works for them and kindly share. I am 77 years old and although I have had this my entire life, years ago there was no formal name. About 30 years ago I needed to start taking drugs to quiet my symptoms and had no problems. Since I am a RN and had to work and commute with my work, was lucky that the simple drugs worked. I must say that ever since my early 20s I have been to dozen of body 'workers' of all types. They never 'fixed' me. About 3 years ago , thank goodness retired, I went totally out of control, augmented on EVERYTHING and my GP was at his wits ends. I am always looking for the cause of RLS although seems as drugs are necessary until the key is found. I might add, I don't think one size fits all. The diet suggestion by Eryl is excellent and seems to have helped me although must admit am not 100% compliant. I have changed my life style and greatly reduced stress and toxic people. I have NOT given up coffee as the literature suggests because it actually makes me sleepy. About 4-5 months ago I "un-augmented" and have no idea what that is all about or how long it will last. I do know that yesterday was majorly stress ful and my legs were flapping around during the night. I also know that when possible I try and rest or sleep during the day. Now, in my looking for the etiology of RLsS, note the medical community has gone through several failings about.

For awhile it was serotonin or dopamine, can't remember, then not enough magnesium, then told to put Ivory Soap under your sheets (really, look it up), then it was too much exercise, not enough exercise. A few years back it was not the serum iron you measured but how much iron was crossing the blood brain barrier. Now the doctors are onto the serum iron levels. Look up the dangers of too high high iron levels in your blood can do. Gabapentin was the sweetheart drug a few years ago, very high doses until it was noted to be closely associated with pancreatic cancer.. Every drug has side effects, some worse with dosage. I ended up having a heart cauterization because my ripinero (requip) dosage was too high. This is all so dreadful and an honest GP will tell you he really has no more of a clue than a neurologist

Bless your heart, no one seems to have the magic answer and this really is debilitating. Mostly make sure your diet is clear. Alcohol use to give me dramatic symptoms, especially red wine. I cut all alcohol out. Be your own best researcher and print out what you find. Check out the genetics of this disease and also note your trigger points. I am sure everyone is different.

Sorry for yaking so long and not sure if I said anything helpful. Bottom line is keep researching and sharing. Use as few drugs as you can get by with, little seems to actually work better than more for many folks. Stay with this forum and keep sharing and asking question. Blessings to us all, Auntie Sioux

A belated THANK YOU for responding and sharing your thoughts Auntie Sioux, it is much appreciated. My gp is supportive and wants me to try a really low dose of gabapentin to start with, but is also referring me to a spinal specialist as the mri showed a compression fracture, which the neurologist thinks may be contributing to my symptoms. Meanwhile I will think about post-xmas diet and alcohol changes.

Thanks again

Alison

Before you make an appointment with a neurologist, you should ask if they are well-versed in the science of and the treatment of RLS AND PLMD. Ask what they typically use and or recommend for their patients and if their methods have been helpful. And since iron appears to have a positive effect on about 90% of patients ( but not a cure), if they don’t check iron levels and track those, you may want to keep looking for another neurologist. Johns Hopkins has a restless legs website which is very informative. Check it out for sure. Good luck and know that you are in good company with others who know very well how RLS is no small problem, but one that can greatly affect the quality of life.

Thank you, I'll check out the Johns Hopkins site

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