2nd post update from neurology and quick Q. can you see your muscles moving?

[Zenawarrior73]

hi only my second post, had a very disappointing appt with a private neurologist over my RLS and muscle twitching. brief history mine started as muscle twitching out hip surgery with restless legs flaring up as a side dish it’s now widespread twitching and restless legs.

He tried prescribing me duloxetine and talking about anxiety and the mind body connection 🤦‍♀️ whilst fibbing me off saying duloxetine will calm the overactive nerves !! Then referring me to a rheumatologist as they think I might be having an inflammatory reaction to surgery.

im not taking the duloxetine.

just a quick question so i can differentiate my twitches from my restless legs

Can any of you actually see your restless legs muscles moving when you get the creepy crawly prickly feeling?

I will keep you posted but my lovely GP is doing my iron levels as per advice from Sue and going to work with me to get them to over 100.

We also think I have sleep apnea which the neurologist completely ignored but again the Gp will take a look at and refer me as my Garmin watch is showing significant dips down to 80% pulse ox at points in the night and I’m waking up either coughing or choking.

the neurologist I saw in Nottingham privately was Professor Evangelou

Lovely bloke but not a clue about restless legs or muscle twitching so avoid if you are going private.

[Joolsg]

You should try to see a sleep clinic. Sleep apnoea can make RLS worse. A cpap machine would help both the sleep apnoea and the RLS.The muscle twitches do seem to be unrelated to the RLS.

It's depressing that neurologists are still prescribing anti depressants for RLS when they are a known RLS trigger!

And that neurologists are still offering dopamine agonists as first line treatment.

You can send your blood test results to Professor Toby Richards at the Iron Clinic, Harley Street. LONDON. A private iron infusion costs around £800.

That would get your serum ferritin up more quickly.

Did the neurologist discuss pregabalin or gabapentin? Both drugs treat RLS and nerve pain.

[Zenawarrior73 in reply to Joolsg]

Hi Jools no he did not discuss either of those 2 medications but both myself and my partner have sent emails to him stating how disappointed we we were he tried prescribing an antidepressant that was likely to make me worse and I will not be taking any SSRI’s so he needs to look at alternatives

I see the rheumatologist next week so may discuss getting Pregabalin from him for the nerve pain if nothing else and see if I get some joy that way

It’s a minefield and I’m just bemused and horrified in equal measures how highly paid neurologists have such little knowledge

I faced similar years ago when I was struck down with ornament vertigo getting told it was just anxiety

I finally saw a great balance specialist who ran tests and declared I’d lost 81%?of my balance in my left ear through vestibular neuritis

Lots of vestibular physiotherapy and the right medication got me better again

There is real health bias I’m finding badging women as neurotic and anxiety ridden and if we just calm down be good girls take the anti depressants we will get better

It’s making me so mad

Thankfully my lovely lady Gp is on my side and so far the only one I feel helping me

I will keep you posted on the rheumatology appt and the blood test results

[Joolsg in reply to Zenawarrior73]

It really is dire.Any other profession has to stay up to date on research and treatment. But RLS isn't even on the teaching curriculum.

A neurologist should NOT accept RLS patients unless he's up to date. Even the NHS and NICE guidelines state that a doctor should check for trigger meds, such as anti depressants.

Dr Jose Thomas at the Gwent Sleep Clinic in Abergavenny is the ONLY UK doctor I've come across who is completely up to date on RLS treatment. His specialism is sleep apnoea, but he quickly realised most of his patients also had RLS. He taught himself RLS by visiting the experts in the USA and reading all the latest research. He stopped prescribing dopamine agonists over 10 years ago. He prescribes methadone and Buprenorphine ,BUT he cannot prescribe to English patients as the Welsh NHS is completely separate to the English NHS.

Pregabalin may well help. Your GP could prescribe it to see if it helps. You start on 75mg and slowly increase by 25mg every few nights up to 150mg. Stay on that for 3 weeks to see results. Increase by 25mg every few nights up to 300mg if necessary.

Side effects are dizziness, eye problems, weight gain, leg swelling, but they do subside after a few months.

[SueJohnson in reply to Zenawarrior73]

Two safe antidepressants for RLS are wellbutrin and trazodone. Trazodone also helps anxiety and insomnia.

[bookish]

Hi, what are your latest vit B12, folate and magnesium test results? Stress and anaesthesia would reduce all of them, especially if nitrous oxide used, and you had symptoms which could have been low B12 already. They all work together. B12 deficiency causes inflammation amongst a heap of other symptoms as it is essential for function of every cell.

[Zenawarrior73]

hi thanks for responding

the Gp took my bloods on 20th Feb and all were within range I got a pronoun and checked although iron was only 57 I’m taking methylB12 and 2 different types of magnesium’s daily along with a multi and iron amongst other supplements but am finding both the twitching and RLS are getting worse

[bookish in reply to Zenawarrior73]

No problem. Were you supplementing before the testing? You can, unfortunately, have a cellular B12 deficiency with any serum level. With a B12 deficiency, folate may even look high. Most doctors do not know that. Supplementing B12 or folate/folic or B complex skews the results and makes a hard-to-diagnose issue even harder. Oral supplements will raise blood level for the majority of people but will not reliably treat deficiency or repair damage.

[Zenawarrior73 in reply to bookish]

Yes I was and I think that’s the problem because I’ve always taken a range of supplements but since surgery I’ve had a myriad of problems and feel run down and my normal supplements aren’t cutting it anymore 2 surgeries 2 weeks apart took its toll I think

Thanks for this input I’m wondering if some kind of IV vitamin treatment and iron infusion might be the way forwards

[Zenawarrior73 in reply to bookish]

should I stop all supplements a week before my next test?

[bookish in reply to Zenawarrior73]

Hi, I don't know, as far as the iron goes - and I doubt that you will hold magnesium long enough for that to affect results so a week should be fine, but B vitamins I am afraid would have to be months, if even then. Taking the Bs changes your blood and can correct any 'metabolic' deficiency, which makes most doctors think that you are fine, when you may not be. A few know this, but not many. I recently found a couple, but it has taken a lifetime. Getting B12 into the blood, and getting it from the blood into the cells and it having the cofactors to work properly are not the same thing at all. Sometimes family history can give you some clues as B12 and folate metabolism are strongly genetic (and epigenetic, so lots that you can do to help). There are a few tests that could be tried but all tests can be normal and you still get a benefit from injected B12. It sounds as if you have a nice GP - you could explain that you were supplementing which will have given you both a false picture, ask for anti gastric parietal cell antibodies, anti intrinsic factor antibodies, methylmalonic acid, homocysteine, active B12 (holotc) testing - she may do some but may not be able to do all, and although any could show you where your problem is, all can be normal (I know because mine are, but injections are working!). Some don't do well with methylcobalamin, some need more methyl groups but those come from methylfolate (rather than folic acid). Don't take folic or folate before you take B12 as it can make a deficiency worse - always start the B12 first. Some also don't do well with IV iron, but you'll gets lots of iron advice from the nice people on here. If your GP can't or won't test, you could ask for a therapeutic trial of B12 injections, and just see if it makes a difference (may be worse before it gets better - nerves need time to heal and red blood cells to form healthily- but you should feel a 'change' if it is going to help you recover after that inital adjustment.)

PS Gabapentin is heavy on your use of folate, so although it helps symptoms it can exacerbate the cause/contributing factor if you had a B metabolism problem already. I was on it for about 12 years and it made me worse for that reason. Gluten turned out to be the cause of my own RLS, which has now gone.

[Zenawarrior73 in reply to bookish]

This has been so helpful thank you so much I think I can probs let get the rheumatologist to run the tests you mention seems as I’m private will keep you posted

[Eryl]

In my experience muscle twitching has been the result of ingesting artificial preservatives like potassium sorbate (E2o2) found in all margarines and many dips and sauces or sulphites like sodium metabisulphite which can be found in wine and fruit juices as well as other processed foods..

[Zenawarrior73]

omg wine 🤦‍♀️ well that’s my Prosecco off the menu now

Thanks for listing the preservatives as I can now start looking out for them in foods I don’t drink fruit juice but I do squash so I’m off to check that now

[Eryl in reply to Zenawarrior73]

It's also used in many condiments used in cooking like lemon or lemon juice and even small amounts can trigger twitches.

[Bantamdyno]

Ive been on a 15 mile run on my vintage motorcycle which vibrates a lot no twitching now but I know they will start again tomorrow but I will get on top of them with my Tsubo , see my posts🤔