Neurologist appointment soon

[rkatt]

This coming Friday I'm seeing my neurologist. I last saw her two years ago when Pramipexole was working, which it now isn't, alas.

This is what I'm planning to ask for: procedures towards possible iron infusion; a higher monthly tramadol prescription – my GP has prescribed 6 a month – which is the only standard med that really works; cannabis, if not now, then in the future when the DoH has it's act together (UK).

I wondered if people had comments about this, or felt I'd left anything out. Any help gratefully received.

I've had RLS for forty years. It's the painful type, like the torture where electric shocks are delivered to the prisoner when she falls asleep. I also get muscle contractions, needle-like stabs of pain, and a bristling sensation like hot glass fragments under the skin. Attacks at night are frequent. I use cannabis and kratom a lot, and owe what shuteye I get to these two brave herbs. I owe nothing to the shysters who blanket-ban them, but what do they care.

I take it dipyridamole is a no-no for now due to side-effect dangers.

And the drug for urinary incontinence that was mentioned here recently as effective in some cases I take to be too vexed to suggest.

My neurologist is a lovely person with heaps of enthusiasm. She isn't an expert, however. Will I still love her after Friday? Hope so.

[involuntarydancer]

You could mention dipyridamole to her and see what she says. I take it for my rls. My GP loves it and is relatively dismissive of the dangers. It only helps as part of a cocktail of drugs - definitely not a silver bullet. I too was intrigued by the urinary incontinence drugs and would love to see more feedback. Also someone suggested a different type of anti-convulsants recently as being very effective for them (supported by a scientific paper albeit if only 4 - if memory serves - case studies). It is called Levetiracetam aka Keppra. That may be my next possible avenue when current system fails.

Incidentally I am having a very good run at the moment which could be due to any number of reasons but did coincide with me starting to take 2,450mg of glucosamine as suggested by someone on here.

I definitely think the iron iv is worth pursuing. And all your other thoughts are spot on. Best if luck, RKatt

[involuntarydancer]

Just one other tip I picked up recently that might be worth a try. Someone tentatively recommended tobacco so I bought some nicotine gum. Again, could be coincidence but every time I have used the gum with breakthrough symptoms in the middle of the night they have gone away. This would be VERY unusual for me (that symptoms abate once they emerge during the night after medication). I hesitate to leap in with strong recommendations for fear of false dawns but on the other hand it is nice to have something new to try and hope is important too.

[rkatt in reply to involuntarydancer]

Thanks for those excellent tips! I tried glutamate and thought there was an improvement, but a dip followed. But maybe this isn’t the same as glucosamine - I’ll look it up. Tomorrow I’ll buy nicotine gum and report back. I’m very grateful for your suggestions and support, the very thing I was hoping for!

[Ert223 in reply to involuntarydancer]

my brother had parkinsons for years and they gave him nicotine patches. rls goes along with it.

[rkatt in reply to Ert223]

Interesting. I do seem to get more relief smoking cannabis than taking it in the form of High Tea. Maybe it’s the tobacco.

[Parminter]

The ferritin check and iron infusions if your levels are low is the first step. It is a simple in-house procedure, nothing to fear.

Then I would ask if she could possibly switch you from Tramadol to methadone. Tramadol causes augmentation in some sufferers, and methadone seems peculiarly suited to our needs - and the possibility of addiction is almost nil.

If you react like I do/did, you will never sleep until you quit pramipexole. It is an appalling, addictive and dangerous drug. In my opinion, it is much, much more dangerous than methadone. It robbed me of many years of my life.

I have tried the marijuana route and the kratom route. A waste of money, except that the former allayed anxiety to some extent and kratom made miserable days seem a tad better.

But my personal experience tells me that NOTHING will work as it ought until you quit pramipexole.

[Restlessone]

Good luck with Neurologist visit. I’d love to hear her suggestions and results.

[rkatt in reply to Restlessone]

Thanks Restlessone! I’ll be back with a detailed account of the interview.

[slim1953]

Hi. I have been taking oxycodon hydrochloride. That has helped a lot

[rkatt in reply to slim1953]

Thanks, I’ll try for that ... see what she says. Off soon.

[Ert223]

The electric shocks sounds like neuropathy which goes with rls.

My neurologist treats it with gabapentan. I Used to get those electric shocks shooting out of my feet and toes. I treat it with a machine called the Rebuilder it might be expensive at least for me...800 us dollars then went to 1300. They claim that an electric pulse at 7.3 hz will help it. It does me one treatment it is gone but comes back. You might get by with a tens machine they are a lot cheaper and may do the same thing (i do not know).

Place them on your feet might help...will not help with rls though.

Best of luck to you.