RLS/PLMs and treatment

[Eccleston]

I would like to share information concerning my health particularly in relation to RLS/PLMs hoping that others with the condition may be helped.

My experience of RLS could go back to my teens when, whilst seated and playing cards with my brother, we would both be moving our legs quite rapidly, toes on the floor and lifting and dropping legs constantly. Apart from this I am not aware that any of the usual reported symptoms have been experienced to an extent where medical treatment was sought.

Fast forward 35 years and I was referred to a consultant because of a problem with snoring. A rather larger than usual uvula was identified as being the most likely cause and surgery was offered but not carried out. In due course I was offered a different route which was referral to a sleep clinic where OSA was diagnosed and CPAP introduced. Regular follow-up meetings with consultants continued. This course of action established that despite CPAP I was not fully refreshed after sleeping. In 2014 an overnight sleep study was carried out the results of which revealed PLMs of a remarkable level. To quote from the letter from the Consultant: “Your patient attended for a polysomnogram recently.” and “The most important finding of the study is that he has very significant periodic leg movement with a PLMI of 181 events/hr, of which even confined to those of micro-arousals, the index was 15 events/hr.” also “ln the first instance I would check his ferritin levels, and if necessary, arrange iron replacement aiming to keep his ferritin levels above 100mcg/L.”

At the same time my local Haematology department were investigating very low iron levels in my blood. Often Ferritin would be <25 where the normal range would be quoted as 25 to 300. (Latest test results quote 30-400 ng/mL for male reference range 20-60 years. The sleep centre initially offered iron infusion and mentioned Ropinirole as an alternative. I opted to pursue the iron infusion route. Later I learned of the compulsive behaviour side effects and am now thankful that Ropinirole or similar has never been prescribed. Reports of augmentation on this forum are genuinely horrifying.

Latest Blood Test results are as follows:

Haemoglobin estimation: 138g/L

Total white cell count: 5.2 10*9/L

Platelet count: 133 10*9/L

RBC count: 4.67 10*12/L

MCV: 93 fL

Haemocrit: 0.44 L/L

MCH: 29.6 pg

RBC distribut width: 14.5

Neutrophil count: 2.7 10*9/L

Lymphocyte count: 1.9 10*9/L

Monocyte count: 0.4 10*9/L

Eosinophil count: 0.2 10*8/L

Basophil count: 0.1 10*9/L

Serum ferritin: 101 ng/mL

Serum vitamin B12: 447 pg/mL

Serum iron level: 15.3 umol/L

Serum folate: 4.0 ug/l

Serum transferrin: 2.81 g/L

Transferrin saturation index: 24

[Joolsg]

Your sleep consultant is ahead of most neurologists in the UK with his knowledge of the link to iron.

I'm so pleased you went down the infusion route rather than Ropinirole.

How is your sleep & PLMD now?

[Hidden]

Thank you for sharing. That's the highest PLM reading i have heard of!

How is your PLMs/RLS these days?

[coldfeet7]

My PLM registered at 81/hr with arousals at 22/hr. Three months on Pramipexole and one day I augmented like I had never experienced RLS before. It was AWFUL. It was like I was being shocked and my legs would violently move on their own! I lost sleep for three days until I could get myself weaned off through substitution with gabapentin. That caused itching so I stopped it as well.

To help with the PLMs (and RLS) I stopped drinking any coffee (even decaf) and only drink a cup of black tea in the morning and then decaf tea the rest of the day. There are agents in coffee that affect our body's opioid receptors that impede the effectiveness of our naturally produced opiods.

It was SO HARD to give up coffee, but it has been worth it. I am now dreaming and my PLMs appear to have been reduced a good bit.

P.S.

My serum ferritin was 400, so my Dr doubted my brain iron levels are deficient. At least I am not a candidate for infusions.