Good Morning everyone, hopefully its okay to post here and introduce myself: Im Dee and its been awhile since Ive been online talking to other RSD'ers ( is RSD'ers a word )

Ive had RSD for 5 yrs or so now, and I think I have tried just about everything out there for it...well at least that which I know is out there

I do get ketamine infusions, Ive had SCS trials, inplant inplanted and removed, meds, and the list goes on as most of you know...

I spent a couple years in a wheelchair and now I use a cane. I moved to AZ because the east coast weather was making it worse for me

I have a wicked sense of humor so plz bear with me I look forward to getting to know everyone and hopefully I can contribute a little knowledge ( very little, this RSD really fries my brain lol) seriously though I am more than happy to share what Ive learned over the past few years

Dee

Hi Dee,

Welcome. How long have you been getting ketamine infusions? What dose do you typically receive? And how often? Just curious....how much have the infusions helped you? I also get ketamine, on an outpatient basis, I just started in the spring.

I live in southern New England, and the current change in weather is especially tough, even with the ketamine I can feel it. A move to a warmer, drier climate like Arizona sounds really awesome just about now. Unfortunately, we've got way too many committments to even consider such a thing for quite a few years. Enjoy the warmth...

XOXO Sandy

Hi Sandy and thank you for the welcomes

Ive been getting ketamine infusions since 2006 or 2007 (brain fart sorry), started getting them low dose at Beth Isreal in Boston every 2 weeks...worked only short term, very short term, but insurance did cover it for the most part.

I then found and talked extensively to a doctor in CA, and went in '08 for my first 6-hr medium dose? (for lack of the actual dosage offhand, need to dig through box of med records) I think he borders right on the acceptable limits but if it works...and it does for me, who am I to say what is acceptable

After an infusion, he then puts me on ketamine pills for one week tapering the dosage. This is what has made life more tolerable for me and it got me out of that wheelchair; I do still hurt and I have to use a cane but I sure am a lot better off than I was.

The weather out here makes such a difference too, and although they have a couple creepy critters that really wig me out, I will take seeing them every once in awhile over seeing snow lol.

I feel for ya living in New England, and will hope for a mild winter for you

Thank you again for the welcomes

I saw a few docs at the BI in the spring of 2009 - I had hoped to get into their ketamine program but they broke my heart and turned me down - they didn't even diagnose me with RSD, despite numerous previous such diagnoses by highly credentialed docs and overwhelming evidence. It was truly an awful experience for me.

A year later, I ended up with Dr. Getson in Marlton, NJ doing a 10 day outpatient protocol in April of 2010. Getson is awesome and has a nice facility. I then went to 2 days a week for a month, one day a week for a month, etc. tapering to once every 3 weeks. My current dose is 200 mg. and since August, I've been treated here in RI with a team that just got licensed to perform the treatments. So far I've had 27 infusions. I need them often, since they wear out in just a few weeks. I tried to go 4-5 weeks without an infusion once and it was much too long.

How long can you go between infusions by getting a large dose and taking the oral boosters? Using a sick day from work every 3 weeks for my infusions is consuming all of my compensated time. I would love to figure out a more efficient way to do this. I returned to work in June after a year's sick LOA.

XOXOX Sandy

Hey Sandy,

Sorry bout BI, I had heard it was hard to get into there but I somehow got lucky and was one of their first ones to get the infusions there, only problem was, is that the doses were low and I had to go back every 2 weeks.

My RSD doc in NH was Dr. Ralph Beasley, that man is a genius, but due to NH laws, he couldn't do the infusions he knew I needed, and Im thinking he must of had something to do with me getting into BI....my memory just isnt what it used to be...

My current dosage as far as I can remember, and I may be wrong, is between 1000-1200 mg, I will know for sure when I go back in a few weeks or I find my old records ( shamely Ive lived here in AZ for a year now and I still have boxes to unpack ) it is a higher dose and I think he comes close to the fine line that is set for ketamine

After the first infusion, I spent the next 6-8 months learning to walk again and getting out of that wheelchair. My therapy can make it possible for me to go 8-12 months without getting another infusion. Dont get me wrong, I still hurt but I am better able to tolerate it. I do not take Methadone any longer though which always did worry me....but thats just me. My doc doesnt make any guarentees but I figure what do I have to lose?

Hope I was helpful and sorry for any typos, talk soon k
Dee

Hi Dee and Welcome, Thank you for sharing your history and information about your ketamine treatments. I live in Arizona too, the past 12 years-have had RSD 15 years-full body and internally.
There are support groups in Tucson and Phoenix. I am 62, married with one married daughter. This is a wonderful group, here on Neurotalk. Take care, one of your new friends, loretta

Hi Dee -

I doubt my docs would ever go to 1000 or 1200 mg. WOW. Do you have any side effects from such a large dose? I noticed that I was having horrible dreams after my dose was first increased from 150 to 200, but they seem to have subsided now.

I need to work FT, and the last infusion I received was in the middle of the week, so I had to return to work the next day - talk about exhausting!!

Thanks for the info. Take care, Sandy

Hi Dee
I'm new to these boards and was diagnosed with RSD around six months ago, I think I'm still in denial. I just finished a series of nerve blocks to see if it helps (I did have some improvement but it didn't last which I guess is common) btw, If RSD'ers isn't a word, then it should be

Hiya CalamityKT,

sorry to hear you have RSD but happy you found this place which can be a wealth of knowledge/support to someone newly dx'd with this, course its also a wealth of knowledge/support to ones who have had it awhile as well.

I remember the first time when a doc mentioned RSD to me and Im like what is that and your making it up, sadly he turned out to be correct

Hang in there though, finding the right doc is a biggy and they are making progress (although slowly) with how/what they choose to treat us RSD'ers and I am always here to lend an ear if you need it

p.s sending memo to Webster's, maybe they will add RSD'ers lol