Neurologist Appointment update

[rkatt]

Stonewall

[LotteM]

Ohhhh. That’s too bad!

And now what? How’s your gp? If she/he is willing to listen, you may find find can wprk together. But you may have to take the lead and provide good info.

[rkatt in reply to LotteM]

Thanks. Yes I think you’re right. My GP’s excellent. The neurologist was a dork. He didn’t know what augmentation was, insisted I increase the Pramipexole, then wanted me to treble my Gabapentin. He was shocked at my suggestion that we look at possible iron infusion, said he’d never heard of it for RLS. Then referred me to a sleep management clinic - sleep hygiene and all that. After a wait of four months him and I discussing things took no more than five minutes. He so badly wanted me out of there. I was maximally upset afterwards. Oh, I didn’t mention, the ‘neurologist ‘ also tried to get me to switch to Roprinerole. He was a bonehead, incapable of taking in another person’s contribution. I’m thinking of a formal complaint.

[LotteM in reply to rkatt]

Terrible! I hope he didn’t present himself as a RLS-specialist. He is obviously not up to date with recent or older developments.

Hope it works out well with tour gp. Do you know how to proceed?

[rkatt in reply to LotteM]

Yes, it was a train crash. I’m up to speed on the meds I need. How to complain? Not sure weather to write a letter or get a complaint form. I was optimistic, now I’m humiliated. Grrr.

[Graham3196 in reply to rkatt]

I had a follow up interview to my sleep study yesterday. It was very disappointing. It was at Monash hospital which is (used to be) highly regarded. I originally went there on the understanding that they were going to arrange an iron infusion for me. When I saw them about three weeks ago they refused the infusion because she didn't accept the IRLSSG report and hadn't heard of such a thing. She suggested that preventing my sleep apnea might fix the RLS. At the review of the sleep study she said that I couldn't get an infusion because none of her colleagues had heard of it either. My sleep apnea is just mild so curing that won't help. I told her that I had already had an iron infusion and I am waiting for 12 weeks to see if it works.

I will write to the Monash admin and ask what fraction of sleep apnea patients have RLS and what proportion of them are cured of their RLS by curing their sleep apnea. I will also ask how they can be operating a publicly funded sleep clinic and not have heard of increasing ferritin in relation to RLS? Now they have me worrying that the other sources of this information might not be reliable.

One 2006 paper found a relationship between RLS severity and Apnea treatment. ncbi.nlm.nih.gov/pubmed/165... It shows a reduction in IRLS score from 17.6 to 12.5 but with what I interpret as very large scatter. Is that good?

So far I think this means that if you have RLS and severe sleep apnea then its probably worth spending AUD2500 on a CPAP machine and hope that fixes the sleep apnea while also hoping the RLS might become less severe. I'm still glad that I had the infusion.

[LotteM in reply to Graham3196]

I have light sleep apnea and now use a special brace to put my lower jaw slightly forward at night. That relieves the apnea - as assessed by a sleep study - but does nothing for my RLS. It does help to sleep a bit better, though, provided my RLS medication is still effective.

Quite a few others on here have a cpap. I know of at least Pippins and Jess. I hope they’ll share their experiences. I think they also still need to take medication for RLS.

Many people with apnea have RLS, but there is no evidence that the apnea is causal.

[Dakota13 in reply to Graham3196]

Hi Graham, I went to a "specialist" regarding my RLS and she had me do the sleep study and found out that I have sleep apnea. Well, I got the CPAP machine and it made no difference regarding my RLS. I went back for another appointment and told her I still have RLS and she said to try the CPAP a little longer--no help. Now I have another appointment the end of February. I doubt that she will have any new info for me. I've learned more about RLS from the people on this site.

Good luck to you! I hope the iron infusion will help you.

Dakota

[Graham3196 in reply to Dakota13]

Thanks for the info. I don't know what the physical relationship between apnea and RLS is claimed to be but it seems strange that it might take months of using the CPAP machine to have an effect. Its like the CPAP has to expel something evil from the body before the RLS goes away. I would have expected that if I put on a CPAP tonight and it stops the sleep apnea then I will get a good night's sleep tonight. The specialist impressed on me that the CPAP was not a cure for sleep apnea and the body didn't "improve" or change - that is the machine stops apnea only while I wear it.

Graham

[Parminter in reply to rkatt]

Rkatt, my own GP has done everything with me, after I took him the information.

From iron infusions to methadone, he is willing to do anything he can if he has the clinical evidence.

He fully admits that I now know more than he does, and it does not bother him.

I have seen only one neurologist - never again. Specialists are inclined to be much more lofty and self-righteous than GPs, in my experience. They hate to be questioned.

[Nottsali in reply to Parminter]

Parminter, How did you convince your gp to give you the iron infusion? Mine said they wouldn't do it on the nhs unless I was severely iron deficient, my ferritin was 52 6 months ago and only 53 after 2 months on tablets. Now on sytron liquid iron

[Parminter in reply to Nottsali]

Nottsali, I am not in the UK.

And my GP is a man who listens, and who reads the literature that I take to him. And my ferritin level was 20.

Clearly, you will not get your iron up much further, so find some scientific literature that explains what our levels should optimally be, and how difficult it is to raise levels beyond a certain (rather low) point by oral means.