Desperate! where can I go for private help for ILMD?

[Ruffabug]

I have recently been diagnosed with stage 4 cancer with 12 months to live. I have severe ILMD which has become much worse since starting chemo. I only had my first one last week. Since then my legs will start jumping at any time of the day and night and drive me mad. Chemo makes me very tired so I need extra sleep and rest. I currently take 4x1 mg Ropinerole which have kept me stable for the past five years without any further augmentation. However I now want to see a consultant private.y ( quickly) to try to sort out some help. I live in Hertford, UK so could go to London or I believe there may be a one at The Lister hospital, Stevenage, or Addenbrookes. Strangely, I tried taking a low dose of morphine, as I had been prescribed some for pain, but it seemed to make it worse! I thought it was supposed to help. I think I may be able to be prescribed over 4 mg per day towards the end of life, but need help now. Are all the consultants at Queens Square really good? I seem to recall reading that one is not as good as another.

[ChrisColumbus]

Firstly very sorry to hear of your diagnosis. While other members may have personal advice, Professor Matthew Walker at Queens Square has often been recommended for RLS. I don't know how quickly you could get to see him:

professormatthewwalker.co.uk/

Best wishes

[Ruffabug in reply to ChrisColumbus]

Thank you for this

[Drls in reply to Ruffabug]

Hello I am so sorry to hear about your diagnosis - I would think that if you explained your predicament to Prof Walker via his site / secretary they would arrange an appointment for you. He should have a better idea about what would help in your circumstances. I’ve also had terrible plmd probably more than standard rls and it is indeed hell - there must be something that would allow you to rest and get some peace. Good luck with it all.

[Ruffabug in reply to Drls]

Thank you for that!

[SueJohnson]

What is ILMD?

[Pippins2 in reply to SueJohnson]

Poster means PLMD

[Ruffabug in reply to SueJohnson]

sorry . Involuntary limb movement disorder. By which I am trying to differentiate between RLS where you get the crawling feeling and the one where your limbs jump and jerk. To anyone who doesn’t know, it would look as if I am having an epileptic fit from the waist down. And in the mornings I get it happening in my arms too and sometimes my head, though not nearly as severely as my legs. Am I wrong in calling it that?

[SueJohnson in reply to Ruffabug]

It is usually called Periodic Limb Movement Disorder (PLMD) or if only during the day Periodic Limb Movements Of Wakefulness (PLMW). It is treated the same way as RLS so I am surprised your ropinirole isn't controlling it.

[Pippins2]

So sorry to hear of your diagnosis. Just a thought are you taking anti sickness meds to help with the chemotherapy? If so that will worsen your symptoms. One that is safe to take is Zofran .x

[Ruffabug in reply to Pippins2]

yes but stopped them after 3 days post chemo. The legs problem started about then so I don’t think it’s connected but thanks for the info. I will ask for Zofran.

[Ruffabug]

Thank you to all those who have replied to my cry for help! It is so good to know that there are people out there who are willing to give help and encouragement. I have contacted my nurse at UCLH where I am being treated and a doctor actually rang me and asked all the details. She is going to contact a neurologist to ask their advice for me but in the meantime she has booked me in for a blood test to check my ferritin levels. Only because I had told her that I suspected the chemo could have altered the status quo on them. I told her that RLS UK say that a too high or too low ferritin level can exacerbate RLS. I will fast beforehand. So I may not need to see a private consultant now but if I do I will go to Prof Matthew Walker at Queens Square.