I've missed you all!

I've been having a really rough time since my ketamine infusion. I can't remember whether I told you before braintalk buggered up, but my ketamine infusion didn't work at all, and in fact caused my liver to stuff up and they had to stop the infusion. My ALT levels were going too high (upto 138 for those that know anything about it, under 50 is normal)

But since then my pain has got out of control. My rsd in my leg has spread, instead of being contained from ankle to just above my knee, it now goes from toes to hip, and my arm and hand are hurting in ways they haven't hurt in about 2 years. Its scary getting new pain in new areas, and old symptoms come back that I haven't had to deal with for so long. It's very unmanaged right now.

I did start back on the meds I was on before my infusions, but they don't agree with me anymore, so now I'm just on 25mg baclofen and thats it, just taking endone when I need one or two. I see my specialist on the 21st, which couldn't come soon enough.

On the bright side, my little girl is an angel! She's 3 months old now and is a TOTAL mummy's girl! She's sitting on my lap right now! I'll post a new pic soon, gotta take some new ones of her today.

I'll go read up and see how you've all been. Hopefully everyone else will find us soon too.

x Kate

Hi Kate!

Sorry that the treatments didnt work out for you, and I hope they come up with some kind of pain management plan that works for you soon.

Im looking forward to the new pics of the little one, she sounds sooooo cute!! I have a grandson that is about 7 months old and me and him are mates. When he comes over we do everything together. Once they let him out of his car seat he starts searching for me. I love all the litle ones, and have another on the way as my daughter just informed me she is preggo again!

Too bad she lives 5 states away, so I cant she her other daughter, and will miss out on this one also. Good thing I have sooooo many kids cause it almost insures there will be some grandkids over to visit at least 2 to 3 times a week.

Here is a link to Jaydee
This one is my favorite!
Well gotta hop off here and head off to PT cya soon!
Allen

Aww, she's a sweetie!

Here's the picture of Hannah I promised... Yeah, kids are the best medicine!!



x Kate

Hi Kate,

It's wonderful to hear from you. Not wonderful to hear about the progression. Like Allen, I really hope you can get some management options going, roll on the 21st.

Your daughter is absolutely lovely, all that intelligence shining out of those eyes!
How are you coping with her, as regards the physical side? Young babies, though marvellous are very demanding and of course you've got to do all that picking up and stuff. Can't imagine.

I've always admired your spirit, and even now you sound fairly perky, despite it all; you deserve to be able to find some way through this, at least to a relatively pain-free life.

What are the doctor's thoughts on why this has happened? Are they relating it to the ketamine, the pregnancy, or what? Maybe you'll know after the doc appt; all the best of luck, do take care.

I'm SO happy to see you here....
all the best.

I am sorry to hear about your ketamine experience .
I really wonder about this new "wonder " treatment.
We really have no statistics about what happens to the group of people that do not benefit from the ketamine treatment .
Do they just remain the same or do they suffer negative consequecences as Kate did , and as several other members from the old forum did ,myself included.

I did not want to share this at the time of my ketamine experience .
However, right after my ketamine treatment is when I spread to my feet .
I mean right after .
My doc said he had never read that in the literature(blah blah) but I have read enough on this forum to know that something is up - a connection between the two.

We are so willing to be rid of this scourge that we are letting ourselves become human guinea pigs.
Having said that I would probably do it again
I did it at the beginning of trials - a shorter treatment .
I knew it was risky and I was willing to do it for science if you will.

However if there are enough bad case scenarios coming out of it by now they should be published so that people have an option.

On another note Artist I too asked about spread areas on Brain Talk 1 .
People told me to get blocks right away so that the spread areas would never become as severe as initial sites.
I also started taking ALA or grape seed extract - take your pick of anti oxidant which in all of Vics writings apparently could have helped prevent spread in the first place ( although I wonder against such a formidable opponent as ketamine !)

Take care and much peace all 3 or 4 of you
I am sure more will be coming soon!!!

GnP

I don't see an edit so I guess I have to post again .
My spread comment was directed at Allen not at the Artist, my mistake .

Allen, have you tried SGB's in your upper body?
That might help with the progression, or at least it's agressive attack perhaps halted to a snails pace as opposed to that of a fast moving train ( wreck) ???.
That was suggested to me by other members when I spread and it seems like sound advice if it it your first experience with upper body RSD.

best of luck to you
GnP