Originally Posted by Cake

Hi Artist, thanks for asking about me!

I haven't seen a pain doctor in AGES, though not through my choice. After my ketamine infusion in August, that didn't take and I had liver problems with (which were fine at a blood test 2 weeks later) I had a magnesium infusion in October, but didn't get to see my dr. I was sent an appt for mid Jan, which was actually about a week before we were due to move 1200kms away, back to our old town and where my previous rsd dr is (the weather in Melbourne was too rough on me, its more stable and warmer longer up here, north of Sydney). I turned up for that appt to be told they had no record of it! I'd been waiting three months already with no pain relief and was hoping to start on something before moving, or at least get some more breakthru meds. No matter what I said, they couldn't get me in to see him.

Then after moving here in mid Jan, there were big clerical dramas with my referral to this pain dr- they said they hadn't received my referral etc when they had (the pain dr faxed a signed copy back to my gp!), then then dawdled and dawdled and I was constantly ringing them and on their back to at least give me an appt date. I finally got one this week, for the second week of May- which isn't bad considering his usual wait is 3-6 months.

In the meantime my GP (I think you call them PCPs) has been able to put me on MS Contin, as I was only on endep and baclofen and they weren't doing a thing! Its helped somewhat, but is killing my gut in the meantime and I now have to see a specialist about that- it never ends!

I'm up for trying another ketamine infusion- for a long time after that last one I didn't want to have another one ever again. I think because the 2nd one lasted for so long I went into the 3rd one expecting at least a few months. So having to end it early because of liver function levels and having it not even lower pain levels at all, was just shattering. I had to regroup a little I guess before I could look at what to try next and get back on the merry-go-round again. But this dr does them slightly differently to the one I had- instead of 7days at 28mg/hr, it would be 10 days at 40mg/hr, so maybe the difference would help. Otherwise I'll see what else he suggests.

The family are great! Hannah's walking, started at 9 months the little bugger! She says "mumma", "dadda", "hurroh"(for hello), "buh bye" and says "yey" and claps her hands when she walks somewhere! She's definately a mummys girl, very clingy with me! The other kids are SO good with her, and with helping me! I'm very blessed to have great kids!

Hmm, I think I talk too much

I hope all is well with you too!

x Kate

Hi Kate,

And thanks so much for the update. So you're back in Sydney, my favourite city...all that sparkly water and yes, great climate. Sorry to hear about the problems with your GP (I'm a Brit, we call them GP too - so don't know what a PCP is, well, now I do, LOL..) How incredibly frustrating. Moving is such a hassle, screws everything up as well as being stressful beyond belief.

But glad you've got something to dull the edge of the pain at last. Sounds like you've settled in pretty well, though. Your kids sound just wonderful - hey, if you think Hannah talks too much, maybe she takes after you - although no, I don't agree, I've always found your posts really interesting, never close to too long.

How do they do this 10 day infusion? Do you have to go in to a hospital bed again, under strict monitoring? Same general idea as before? Sounds interesting and I hope you're deemed fit enough to try again, if you can face it.

Just out of curiosity, what kind of spider bite was it - not a redback or funnel, surely? Oz has some pretty fierce denizens of the undergrowth - I remember gardening in Sydney, wearing reinforced industrial gloves! I lived for short periods in Mossman and then Whale Beach, loved it. Are you further North than that?

Oh yes, do you ever hear from MissDrea/Andrea (Lil Devil) - she came on here when we first started up, briefly, I often wonder about how she's doing.

Take care, and again, thanks so much for keeping in touch - can't help wondering how we all are and what's happening to people! You have had such specific experiences with coping with RSD and are always so good about sharing it, thanks for that too.

Good to see you back here,
all the best

[Jomar]

PCP = Primary Care Physician - some ins companies will require a PCP to be chosen so all care is coordinated thru them.
quite often the PCP is a General Practitioner or a Family doc but can be an Internist also.

[Cake]

I'm actually a bit further north of Sydney, I'm in Newcastle, so about 1.5hrs up. I just say Sydney as not many foreigners know where Newcastle is you're the exception!

Drea is doing fairly well. She's had her stim taken out and is talking to her pain dr about other procedures, including ketamine. Hopefully she'll pop in here soon and give you a proper update!

The 10 day infusion works the same way here as the 7 day infusions I had- you're in hospital for 10 days on a constant drip of ketamine, though they change the iv insertion spot every few days. You can get out of bed and walk around, just taking your iv trolley with you on its battery charge. I'd often go and sit outside (for a smoke ) or when family came to visit, or go downstairs to the chocolate bar vending machine in the middle of the night! lol They do blood tests at the start, the middle and near the end of the infusion to make sure your liver function is still ok. They might check mine more often due to my previous problems.

Oh, and it was a white tail spider bite. So not poisonous, but they do get infections as they're considered "dirty spiders" as they push the dirt from their fangs into you when they bite I was pregnant so couldn't take strong antibiotics easily, so thats why it got really infected and caused the nerve damage and the rsd spread.

Chat to you again soon!

x Kate