RLS neurologist in the Netherlands

[vikkkk]

Could anyone recommend a neurologist who is an expert in RLS? Any city in the Netherlands is fine

[Pindarinda]

Hoi vikkkk,

I am very enthousiastic about the knowledgeable help and diagnosis by the neurologist M. Vlak. She is involved by the regular clinic neurology as well as the sleeping centre of HMC hospital of The Hague. Her expertise includes rls and plmd. With the help of u your general practitioner you can make an appointment for a consultation at the sleeping centre.

I wish you luck!

[LotteM]

Hi! I don't know where you are based, but my neurologist is V. van Kasteel of SEIN. She works from Zwolle and Groningen. You need to bring your own knowledge as well l, as she is open to and willing to study suggestions when based on good knowledge. She organised an iron infusion for me, even though that can not be done by SEIN, as it is an epilepsy/sleep clinic, and she was willing to consider and finally prescribe buprenorphine, which she knew as Temgesic.

If you need more info, send me a pm.

Vlak sounds good as well. I went to see neurologist M. Rijsman at MCHaaglanden, but found her unnecessarily strict and conservative in the treatment options she offered and unwilling to really consider off-label prescriptions, even well-established ones as gabapentin and pregabalin or methadone.

[vikkkk]

LotteM Hi! Do you know how much was your ferritin before infusion? I am really interested in getting one as my RLS seems to be connected with iron, but my ferritin is 60 which might be considered normal for health providers (for RLS people it is too low), so I am wondering if its possible to get one with this ferritin level.

[LotteM in reply to vikkkk]

Hi vikkkk, sorry for the late reply. My ferritin was 102ng/l before the iron ifusion (that I got in Isala, Zwolle). Officially too high to warrant an infusion, but this was after taking iron bisglycinate every other night for more than a year. Prior to that,my ferritin was well below 100, and reduced slowly in periods when I did not take the iron bisglycinate supplement, even to a point that gets classified as anemic.

Here is the link to the IRLSSG recommendations on the guidelines for iron treatment of RLS of 2018: sciencedirect.com/science/a.... There is also a newer review (link.springer.com/article/1..., but unfortunately the full text is not open access. I hope this is helpful.

PM me if you want more details about my neurologist and the one at Isala who commisioned the infusion.

[vikkkk]

Pindarinda what was the treatment you got from this doctor? Was it effective? I am on pregabalin but it seems to start not working anymore.

[Pindarinda]

That’s a pity to read that Pregabalin in your case is not as effective as it used to be. I got prescribed 300 mg pregabaline and 200 mg of tramadol. She told me that I should be prepared that Pregabalin stopped working in the near or far future and that she would help me to find another medicine, preferrably with no/little chance of augmentation.

[vikkkk in reply to Pindarinda]

Pindarinda do you feel any side effects from Tramadol? I believe it would work for me but I am worried about side effects and addiction.

[vikkkk in reply to vikkkk]

Also could you write the full doctors name? I struggle to find the doctor on google. Thanks

[Pindarinda]

Hi Vikkkk,

I do not experience any noticable side effects of tramadol. The first few weeks you feel a little bit ‘rozig’ after swallowing but that was no invitation for me to take extra when having trouble to get or maintain a reasonable night sleep. So i discovered no noteworthy side-effects or increasing dependence. The neurologist i mentioned is M.H.M. Vlak. HMC Westeinde slaapcentrum haaglandenmc.nl/specialisme...