RLS specialists in the Midlands/North West

[thewanderer]

I am based in Shrewsbury. Can anyone recommend a neurologist in the Midlands / North West/ North Wales area who is expert in RLS. After 20 years of managing the condition primarily using exercises and codydramol ( and trying many other substances etc) it has now deteriorated to the extent I need a more aggressive treatment. My GP is prepared to refer me but I would like to identify a specialist who is amenable to the use of Temgesic or supporting the use of THC through the UK Project 21 scheme.

[SueJohnson]

What other substances did you try?

[thewanderer in reply to SueJohnson]

These are the various treatment methods I have tried:

- Magnesium tablets ( over 3 months)- no impact

- Magnesium leg spray - no impact

- Iron bisglycinate 25 mg/day for 6 months - no benefit

- Ibuprofen rub 10% - rubbed into the the lower leg muscles used in the middle of the night when exercising fails. Sometimes provides a clear benefit but extreme RLS will overwhelm

- Biofreeze spray - has occasionally helped. The freezing effect can distract from the RLS sensation.

- Various dietary changes - no coffee, no chocolate, no alcohol - no benefit from any of these changes

- Valerian - no benefit

- CBD - no benefit over 6 week trial

- Tens machine - this can sometimes help when struggling to get any relief but again extreme RLS sensation can overwhelm the electrical impulses

- Co dydramol provides some relief when used in combination with exercises in the middle of the night

I have tried to adopt a scientific approach when trying these methods by only applying them one at a time and trying them over a reasonable period of time.

The one technique that I have to use every night two to four times is by using exercises that place as mcuh strain as possible on the calf muscles - flexing , jogging for example.

I have found nothing that provides full relief.

[SueJohnson in reply to thewanderer]

When you see your new doctor, above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Instead have him prescribe gabapentin. Beginning dose is usually 300 mg gabapentin or 100 mg if you are over the age of 65. It will take 3 weeks to be fully effective. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a... Since you have never been on a dopamine agonist, there is an excellent chance that gabapentin will control your symptoms and you won't need to go the opioid route. I take gabapentin and it completely controls my symptoms.

[thewanderer in reply to SueJohnson]

Thank you for your advice Sue. I was offered a dopamine agonist presciption over 15 years ago and turned it down because of the potential side effects. A decison I'm glad about now having read about many bad experiences reported on this website. I have also avoided gabapentin as again the side effects of fatigue and brain fog are the very things I am trying to avoid. It is interesting to read that you have only good things to say about it, it may be worth a try.

In general I have tried to avoid taking further drugs as I have to take a cocktail to control Ulcerative Colitis - azathioprine( an immune suppressant), prednisolone ( every 3 -5 months a course is needed) and balsalacide. Whether it is this condition, the RLS or the drugs that give rise to the fatigue and brain fog that make life difficult I don't know. RLS followed very shortly after Ulcerative Colitis and I can't help but think that there is a link here. Interestingly I get relief from RLS when I am taking higher doses of prednisolone (20 to 40mg). This is not something I have seen reported here. Unfortunately long term use of Prednisolone is not safe.

[SueJohnson in reply to thewanderer]

Fatigue is a side effect of azathioprine as you probably know. That's interesting that you get relief from your RLS as prednisolone is a steroid and most people have worse RLS on them. Brain fog is rare with gabapentin. Minor fatigue can occur. I have it but I hardly notice it. My suggestion is you try it at 300 mg for three or four weeks and wait that long before worrying about any side effects. If you still have ones that are not acceptable to you, then you can stop. Nothing ventured, nothing gained. If not, you can start increasing it. The fatigue won't get any worse at higher amounts. Have you had your ferritin checked?

[thewanderer in reply to SueJohnson]

Just waiting on a ferritin test.

[SueJohnson in reply to thewanderer]

When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation numbers. You want your ferritin to be over 100 and your transferrin saturation to be over 20% but less than 45%. Improving it to that helps 60% of RLS patients. If your ferritin is less than 75 then take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach and preferably at night. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you may need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with its absorption. Don't take tumeric as it can interfere with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 3 months.

[thewanderer in reply to SueJohnson]

Thank you Sue I will do that.

[Eryl in reply to thewanderer]

I'd suggest that you try avoiding foods with a high glycaemic index and refined seed oils as they can both cause inflammation in the body and hypersensitivity of the nerves. I avoid sugar swetened foods, foods made with wheat flour and only use cold pressed olive oil, coconut oil or animal fat and my rls is gone without any medication.

[thewanderer in reply to Eryl]

I'm pleased to here that you've found a solution for you. I guess that 's quite a tough diet to adhere to? I have not noticed any impact from sugary foods but then I don't eat that much of them. Its quite difficult to assess the impact of dietary changes as it takes many months and it's hard to isolate the many variables.

[Eryl in reply to thewanderer]

Not really difficult to adhere to once you've decided on alternatives for the usual thing that need to be cut out. The only problem is that most people only think of sandwiches as snacks and sugary foods as deserts. The good thing is that when you eat low carb the hunger pangs are nowhere near as strong so it's no problem to skip a meal.

[Joolsg]

There are only about 2 or 3 neurologists who know more than the basics in the UK and most are still prescribing dopamine agonists ( Ropinirole, Pramipexole, Rotigitone) even though the top experts who have written the Mayo algorithm have stated they should no longer be first line treatment.Prof. Walker at Queen Sq in London will do phone appointments and will prescribe low dose opioids.

Cannabis is available through the Medical Cannabis Clinics separately. Very few neurologists prescribe it. The pain specialists will consider prescribing but it's not available on the NHS so it can be expensive.

[thewanderer in reply to Joolsg]

Thank you

[Dotmowatee in reply to Joolsg]

I have seen an excellent neurologist in Bath who is very knowledgeable. My local pharmacist and haematologist in Plymouth are also up to date with rls treatments.

[Joolsg in reply to Dotmowatee]

That's really good to hear. Can you send the name and details to Kaarina the administrator. She keeps a list of neurologists recommended by members. As they're few and far between we need updated info.The few we do know about still seem to be recommending Ropinirole or Pramipexole on occasions and we need to be wary of that as no neurologists should be suggesting these drugs as first line treatment any more.

The NICE guidelines are already out of date and need to be amended to take account of the Mayo algorithm.

[Kaarina Administrator in reply to Joolsg]

Hi Joolsg, I already have the details of this neurologist on our small list of neurologists so obviously someone else has recommended him in the past, which is good to know.

[Kaarina Administrator in reply to Dotmowatee]

Hi Dotmowatee, I believe you have already mentioned the name of the neurologist you saw in Bath in another thread. I made a note and noticed that his name is already on our little spreadsheet so obviously someone else has recommended him in the past. Thank you.

[Kaarina Administrator]

A member of the forum HilsK has, in the past, recommended, Dr Nicholas Silver, Neurologist, Spire Cheshire Hospital, The Walton Centre, Fazackerley, Liverpool (NHS) or Spire Murrayfield (Private). She also recommends a young neurologist, Dr. John Partridge who practices at Royal Stoke in the Midlands, You could send HilsK a private message to ask any questions you may have.

[thewanderer in reply to Kaarina]

Many thanks1

[bedith6]

I have been seeing Dr.Bagary at the Barberry Centre Birmingham. He has prescribed Temgesic for me which I am still experimenting with. Hope you get some relief soon.

[thewanderer in reply to bedith6]

Thanks for that.