RLS or not?

[Suz109]

First time poster looking for some advice.

I am not sure if I have RLS or peripheral neuropathy. I am not sure how long I have had this but definitely over a year but much more noticeable in last few weeks.

My symptoms are a “buzzing/fizzing/vibrating feeling in my legs and feet. Initially when I had it I thought I had my mobile phone in my back pocket, but shrugged it off. I don’t seem to notice it as much when I get up and walk although sometimes it is there or when I stand still. Definitely more obvious when sat down and seems worse around 6pm but I do get it off and on all day. I have no trouble sleeping. Moving around definitely helps.

My GP suspect peripheral neuropathy or RLS, she doesn’t think it is MS. She has ordered a full blood test and to check for iron/B12.

Does this sound like RLS to anyone? Any help appreciated

[SueJohnson]

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.

The first is the most important. Do you meet all of these? If so reply back and we can give you some advice.

There is a way to test if it is RLS. Ask your doctor for a prescription for 3 days supply of pramipexole .125 (.08) mg or .25 mg of ropinirole. If taking this stops your symptoms then you have RLS. If not then you don't.

However and this is important. DO NOT CONTINUE TO TAKE EITHER OF THESE. If they work you will be strongly tempted and doctors who are not up to date on RLS which is most of them will try to have you take them because they used to be the first line treatment, but up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin or pregabalin won't work nor might iron and it has been found that suffering from augmentation can lead to painful RLS which you don't want. And one expert believes everyone will eventually suffer augmentation.

[Joolsg]

RLS is worse in the evening and at night and the uncontrollable URGE to move is the key element. Have a look at RLS-UK website.

It sounds more like peripheral neuropathy to me.

I have both MS and RLS so it's easier for me to distinguish between the burning/ fizzing/tingling of neuropathy and RLS.

RLS is more of a 'wound up' sensation, a feeling that you will throw yourself out of the window if it doesn't stop. Neuropathy happens all day. RLS happens more at night when you're trying to rest or sleep.

Hopefully the blood tests will shed more light on things.

[bookish]

Hi, you may of course have both, but to me that sounds more neuropathy. Might be peripheral, could be small fibre and B12 would be my first suggestion as testing is so fraught with difficulties. The important thing to remember is that there is no test to rule out the possibility of B12 deficiency - several tests which might rule it in, and some of those you may have to push to get done - but all can be 'normal' and you still have a cellular deficiency. Too many doctors due to poor training think that B12 (and co-factors) are a blood deficiency and will always show in the blood. But neuro symptoms are far more common and usually occur first, even if the blood shows later.

What other medical history, surgery, meds, supplements, diet (vegetarian?), family history, any autoimmunity - lots of reasons why you might not absorb well if you want to dicuss! MS and B12D are often confused for one another, and both need B12 due to damage to myelin and supporting nerve repair/health.

Tests which could be useful: Full blood count (for MCV, MCH, Hb, RDW), serum B12, serum folate (B9), active B12 (holotc), anti-gastric parietal cell antibodies, anti-intrinsic factor antibodies, serum gastrin, homocysteine, methylmalonic acid (MMA), plus of course blood sugar, iron, vit D, thyroid.

Important note, please don't take oral B12 supplements. It may well put up your serum B12 but may well *not* resolve the neuropathy. And doing it before testing is complete will make diagnosis very much harder to get. Cheers