Thanks Lin Marie - feeling pretty good again the last 2 days -maybe not 65%
but a good 55%.
I am quite enjoying this guinea pig experiment :)

If I can share what I am learning with other's then it is all the more worthwhile.
So little is known about this disease and consequently our options to treat it . It is so great that we have venues like this to get the information out there!!!!

Desi - Thanks - I only said it as it is true :)


Peace

GnP

So happy for you - wishing you the best
 

How wonderful that you are experiencing relief from the ketamine. I am so very happy for you. I have heard that it really helps burning pain. Are you getting it in an IV or an A Line ( run up through your arm to your neck)?
This is a different type of threatment I never heard of. I thought you had to go into the hospital as an in patient for a week - then have boosters for a day every other week or so. I believe that is how Dr. S. does it.
Good for you! It is unfortunate about the hallucinations but I believe there is a drug they can give you to prevent this. I have read about this in several places - just can't remember the name of it.
best wishes for continued pain free days.
Sydney

I took the last of my ketamine
 

and now I want to cry like a baby:) :(

Yes today will be my first day without .
The last 3 to several days have been GREAT.
MY burning pain was down to almost nothing :) :)
I was more accustomed to the feeling of the ketamine so I was able to do more than just lie around and stare into space like the first week .
I also felt really good- no I mean really really good.I used my hands in ways I haven't used them in years!I cleaned out a garbage disposal:D
Now I know to many that does not sound very exciting - and on the excitement- o rama meter it probably wouldn't score very high - but when the thought of even putting your hands down there normally has me running in the other direction, this is huge!!!!!!!!
Two weeks ago it would not have been within my realty . Yesterday I said"Wait ,I can do that " and stuck my hand down and messed around in there to see what was stuck in the blades of the the disposal and I pulled the stuff out ." I was grossed out , stunned , and incredulous all at the same time.
My hand did not come out bright red and it did not hurt while I was doing it.
My hands as of right now do not feel fragile and tender on top of the burning and pain.
How long this will last I don't know but I am going to savor every minute of this.
I don't feel "cured" but I feel a whole lot better right now.

It is a little early in the new day to see how things will go.

I do have an appointment with my PM doc this week and I would indeed like to discuss some ways to incorporate ketamine into my lifestyle-and med protocol.
As it has a short half life and leaves the body so quickly maybe 10 or 20 mgs for breakfast may be low enough to just do something before I go anywhere
and maybe a goodnight dose at bedtime so I am not a danger to anyone .
I have no idea if he will be keen on these treatment options but you can never get a "Yes" if you don't ask.

Again,I am very psyched for the potential for this drug for all of us !!!

Even if I don't feel good for long ......I had yesterday (there is a cheezy song in there somewhere :D )

peace

GnP

How wonderful!!
 

Yay, GnP!! I am so utterly happy for you, and that the ketamine brought you such good results! :hug: :hug:

Savor up those wonderful days with a lot less pain.

Love ya! xxxxxxx :hug: :hug: :hug:

Cleaning out the garbage disposal sounds exciting to me! Its the little things that we have lost that make it so much harder to deal. Iam so happy for you. I hope it keeps working!


Sue K.

GnP that is awesome! definetly get your dr to have a look at it daily. It has made a difference to my life in a way no other med did. I am SO impressed with it. Yeh, my pain is still severe.. but 125mg ketamine a day works better than the stupidly high levels of morphine/ fentanyl I was taking and with NO MAJOR SIDE EFFECTS...

fingers crossed and let me know
xxxxxxxxxxxxxxxxxxxxxxxx

Thank you all
I guess cleaning out the garbage disposal IS a major accomplishment Sue.
I don't recall feeling up to that challenge in my immediate or not so immediate past .
It has been 2 or 3 days since I stopped taking the ketamine.The first day , I felt kind of crappy.
I certainly don't feel as bad RSD wise as I did before the ketamine .I am not in a flare .
That was the major purpose of this procedure . I was in the worst flare-up I have ever been in .

I now have a sense of not being as "perfect" as I felt while on the medication.
My limbs had a more sturdy feel about them .They already feel a bit more fragile and tender .
I see my PM doc on Friday and I am going to bring up a low dose of ketamine as part of my med regimen for bedtime .It does have strange side effects so I couldn't take it in the amounts I was on before or I would have to stay home all day.

11 months until I hit Germany and I am really looking forward to it!!!!!!
This stuff has great potential for all of us so I am very excited.If you have a chance to try it -PLEASE DO!!!In oral form it is very inexpensive.

Peace

GnP

GnP,

Can you give me some specific information about the doctor's protocol with the ketamine? I'm just wondering if this could be something that I could try. You had mentioned that you weren't able to function for the first week. Were you able to drive, etc? What was the duration of the medication and such?

I had tried to schedule an appt at Mayo Clinic but was denied. I guess my RSD isn't bad enough...

Any help you could give me would be very helpful.

Thank you!

Hi GnP,

Is this ketamine procedure something that you do before you go to Germany?
Is the Germany process more ketamine for a longer duration?

I hope you are still feeling good. And, yes, cleaning out a garbage disposal is a major accomplishment when you haven't been able to use your hand for awhile. Do you still have much strength? I lost alot but am very happy to just be able to use my hand.

Linmarie
:hug: