Parkinson’s and RLS

[SR223]

Hello,

I’m new to the forum and have signed up on behalf of my mum, to try and get some advice based on her current medication and her RLS.

Mum-has been diagnosed with Parkinson’s approximately 1 year ago , although was misdiagnosed twice by 2 x GP’s as not having it! Not great.

Medication taking for Parkinson’s - Madapor during the day and Sinimet long release overnight.

Currently prescribed Fluoexetene to combat anxiousness caused as part of Parkinsons.[ currently reducing this with a view to stopping as it appears to do nothing to alleviate being anxious. ]

Clonazepam supposedly to help with sleeping and RLS. [ does nothing for RLS ].

Keppra for long term Epilepsy [although no episodes for years, but never properly reviewed.

Rapinirol for mildly high blood pressure.

quite a cocktail of drugs for anyone, I’m sure you would agree.

Anyway, the vicious RLS symptoms appear as soon as mum wakes up, usually around 4AM and lasts for around 3 hours on average.

having followed several threads Mum booked a full iron test last week, results below: [any advice on whether these look right for RLS, much appreciated ]

Serum Iron Level:

21.2 wool/L been classed as normal

TIBC incl. iron:

65.0 oumol/L classed as normal

saturation iron binding capa. 32.6% classed as normal

Serum Ferretin:

95 ug/L classed as normal

many thanks in advance for any help you can offer.

[SueJohnson]

Parkinson's patients generally have too much iron whereas RLS patients often have too little but your Moms only slightly low for RLS - one normally would want them over 100, and are certainly not too high. Strange.

Clonazepam really only helps with insomnia, not RLS. You mention Rapinirol but I can't find it. Do you mean ropinirole?

[SR223 in reply to SueJohnson]

Sorry I read it wrong , it is Ramapril for blood pressure

[SR223 in reply to SueJohnson]

Hello Sue, I have been following your detailed replies on a number of other threads and wondered if you could offer any advice on the following:

We have been pushing mum’s GP to read up on the Mayo Algorithm to try and get to a workable solution…

We have stalled on the first hurdle unfortunately….

We requested that a full blood test be taken to determine any deficiencies in vitamins B1,B3,B6,B12,D3,K2,Potassium, Copper and Magnesium.

When the results came back, B1,B3,B6,K2 and copper were missing.

GP never contacted us to tell us this.So when I rang to ask why, we were told we had to go private for those testing, as the NHS didn’t cover those. When I asked for suggestions on where to look into this, they had no clue !!!! Suggesting they clearly don’t know anything about RLS as you keep alluding to. I did also ask what other people with Rls are advised, they were stumped. I’m so angry that they are almost saying” their is no more we can do, with no suggestions of help”, it’s actually pathetic when you think about it.

Q1; do you or anyone else have a UK email/phone number for any UK labs that could do a full vitamin deficiency test on all of the required vitamins, to try and rule in/out supplements/infusions.?

Q2; my mums iron was tested again which now shows 105, as you have said previously, this is just in range of above 100, but on another post you mentioned some people needing to be nearer 200 or 300. Would a supplement [if doctor approved] of Iron Glycinate improve the iron figure to these kinds of numbers and what sort of daily dosage would be appropriate.?

Many thanks once again for your time,

Regards

Simon

[SR223 in reply to SR223]

Sorry, I meant ferrous bisglycinate

[SueJohnson in reply to SR223]

For Question 1, I live in the US so you would be better making this a separate post so people in the UK can see it.

Question 2 - You don't need to get a prescription for the iron bisglycinate - you can just get it from a pharmacy. 50 to 75 mg.

[SR223 in reply to SueJohnson]

Thank you for the quick reply, it is appreciated.

Regards

Simon

[karoo]

My dad had Parkinsons and I and my brother have restless legs - I went to see a Neurologist years ago to get my diagnosis and he put me on Neupro patches - drs don't like prescribing as they are expensive - but they have worked wonders for my dads symptoms and both myself and my brother - might be worth mentioning them to your clinician. They are Rotigitine but it gets dispersed slowly and evenly into your blood stream rather than a hit of tablets which your moms have probably worn off by 4 am

[NJB71]

Hi there. Your mum is certainly on a cocktail of drugs. I see that she is on Fluoxetine which is an antidepressant that almost certainly will not help RLS. Indeed it is listed by the RLS website as a drug to avoid. I have no knowledge of the other drugs you list except Clonazepam. I hate to disagree with Sue on this, as she has such a wide knowledge of all things to do with RLS, but Clonazepam definitely does help with RLS. It is listed on the NHS website as being prescribed for that as well as for seizures and panic disorders.

I take Pregabalin for RLS, 300 mg 2 hours before bedtime and 1 mg of Clonazepam as I settle down to sleep. This regime works perfectly for me, as I am on Sertraline, an antidepressant which I need for severe anxiety, but the Pregabalin and Clonazepam mean I have no RLS at all. I get a good night’s sleep which I haven’t experienced for most of my life until my dr got me on this regime.

I wish you and your mother well.

[Jerry57 in reply to NJB71]

Clonazepam worked great for me too, NJB71, but my GP switched me to tramadol very early in my RLS journey, because he said, "Clonazepam was too addictive". I've been on tramadol for nearly 25 years, and now I'm dependent on it. Currently my RLS is under control using tramadol and iron supplements, but Clonazepam worked just as well as tramadol for me.

[SueJohnson in reply to NJB71]

I'm glad the clonazepam helps your RLS and that's what is important for you so definitely won't dispute you as medicine affects each of us differently. However, according to the RLS Foundation's magazine it's" efficiency has not been established and it should not be used to treat RLS." My doctor had me come off it.

[discgolfrules in reply to SueJohnson]

I agree, happy it works. My two cents having both RLS and PD Chlorazipan scares the ship out of me. Makes my symptoms so much worse, while making it next to impossible to get up and walk it of. Like being stuck in tremendous pain. Scary business for me, personally.

[SueJohnson in reply to discgolfrules]

I think you meant this for NBJ71

[msrose228]

I had bad veins in my legs causing rls, in process of having them ablated. The meds are brutal, so many side effects

[Ducatidave]

Hi. Please see my earlier post re salt, caffeine etc. it’s right back to basics but please see what you think.