Thanks for the info Mike!

Today I had another meeting with my neuro doctor. He concluded that I do have a 'pain syndrome' and calling it CRPS or RSD is the same thing apparently...

He explained that i am not a bad case as i dont have any real damage such as a fracture or nerve damage and recovery will be easier. He has now put me on the following medication:

Lyrica - 150mg x 2 (I have been on it for already 2 weeks now with not much affect)

Amytriptaline - 150mg Night (Just started them two days ago which help me sleep much better)

Muscle Relaxant - 50mg x 3 Daily (Just started today)

He also wants me to start psychological support together with very very light pool PT and massage.

He is also confident that I will be able to get better with the medication, psychological support and slow PT in around 2 - 3 months. Furthermore, he said that time is not an issue for me although I have been 6 months suffering in pain together with increasing symptoms and pain travelling to my arm and other knee.

Although my doctor is not so 'worried' about my case, i still know what RSD entails being a good or bad case. At the end f the day, I still stuck on the chair 90% of the day and hardly able to move

What are your suggestions / opinions on the medication? Is it really possible for it to 'reverse' my RSD and can I have a clean conscious and go back home know that im 'safe' as the medication will only get me better?

I know its difficult for an answer but any advice on the about will really help me that what im doing is the safe thing or if I should look into other treatment at this stage...

Thanks,

Nigel

Hi Nigel!!!!

I really hope you will heal completely soon. Something that I strongly recommend is your having Vitamin C infusions. A year ago I slightly injured my ankle, which caused my foot RSD that I had for years to spread to my ankle. At first nothing worked and it seemed sure that I would forever have ankle RSD. It was awful!!!!

Thank goodness, a doctor put me on weekly Vitamin C infusions which healed my ankle almost fully!!! Now, a year later, I don't have but the mildest of RSD, almost as how it was before my foot injury.

There have been studies proving the importance of vitamin C in the prevention of RSD. This is the link to one of them. Or you can just go to Google Scholar and type CRPS or RSD and Vitamin C. My RSD specialist also told me it is a proven fact.

http://www.cabdirect.org/abstracts/20003017023.html

http://ebm.bmj.com/content/13/2/48.extract

The vitamin c infusions are through IV and are in my experience completely safe and extremely helpful. Definitely try them. They do them in Cambridge Massachussets and Welleslley Massachussets at both Marino Centers. Dr. Gordin is wonderful. Maybe where you live you can also find someone who does the infusions.

Best of lucks!!! I send you all my support and wishes for a speedy recovery. You will make it!

I forgot to say that the IV's of vitamin c i got are 50 grams each. A potent dose that cannot be taken by month. That's why it works so great I had them weekly for a month or two and that was enough so it is not necessarily forever.

Nigel....

I am 21 as well and have had RSD for over 3 years.... I cant type much as my hands are really painful right now... but get the best help you can and you can get GREAT advice on here... most of the time better than any research or any doctor you will see because most doctors will just dismiss it. Hang in there know you arent alone... one thing i learned.. is do one thing you love everyday. Weather it is watching your favorite sport, tv show, reading a book, cooking, throwing a football across the room, anything to just bring joy to your life at one point during the day. That one bit of advice brought me a long way.

Dear Nigel -

I have no problem with what your doctor has prescribed for you, although I would have liked to have seen a "third-generation" IV biphosphonate in there - so long as you don't need any major dental work and your liver is in good shape - but take issue in general that time is not a concern for the patient. And even though you are - at three years - no longer in the acute stage, there issue of potentially ongoing neuro-cognitive changes, that makes the maintenance of the status quo, albeit in greater comfort, less than an optimal solution. If you search the forum for "brain fog" you'll find a large number of anecdotal reports of increasing awareness of cognitive impairment over time: particularly in terms of staying focused/organized ["executive functioning"] and memory issues. (Please note, however, that in Outpatient intravenous ketamine for the treatment of complex regional pain syndrome: A double-blind placebo controlled study, Schwartzman RJ, Alexander GM, Grothusen JR, Paylor T, Reichenberger E, Perreault M. Pain 2009 Dec 15;147(1-3):107-15, Epub 2009 Sep 23, FULL ONLINE TEXT @ http://www.rsds.org/2/library/articl...n_Pain2009.pdf although the authors find that a large number of peoples' pain had gone into long-term remission, there was still no significant improvement in terms of "quality of life" issues. And unfortunately, Appendix II to the article, in which the "quality of life" scale is broken down, is not readily accessible.)

And please see the rather lengthy post I just put up in one of your other threads, RSD Specialists/clinics Germany http://neurotalk.psychcentral.com/thread149765.html

Mike


PS Signing out here in LA with one last thought: if possible, try to avoid having too many of your own threads going on a common question: it makes it hard to keep up.

Managed to get an appointment with Dr. Rohr! I am currently in Saabrucken waiting for my appointment on Wednesday.

Any advice as to what I should ask him besides the obvious stuff??

Also, does RSD affect breathing, blood pressure, hear rate, digestion, saliva, adrenaline rushes etc etc? As time goes by im notice more and more wired things..just wanted to know if im fussing or if its the RSD.

Thanks,

Nigel

Nigel -

Sorry for the delay in getting back to you; hopefully you'll have a chance to read this before your appointment.

The key thing to be asking about are the availability of "non-palliative" treatments, along the lines of those which I outlined in my post #17 in your thread RSD Specialists/clinics Germany at http://neurotalk.psychcentral.com/thread149765-2.html

And specifically, where some of those treatments may be more or less effective, depending on the state of the disease that you are in, it's my experience that the clock and calendar are relatively imprecise measurements of where we may be at any point in time. Accordingly, if price is no object, I would urge you to explore having a cytokine panel drawn: the same tests a departmental chair at the Mayo Clinic referred me to Johns Hopkins for in 2006, only to find - at that time - that while cytokine testing was taking place throughout Johns Hopkins' research labs, it was not clinically available.

Here's hoping you have better luck than I did.

Mike

Just got back from my appointment with DR. Rohr. Didn't manage to read your post before mike.

He suggested that my best hope of remission in my case would be to do the 5 day in patient ketamine treatment. He gave me 2 weeks to go back home and relax and think about it.

At the moment my parents including myself are very anxious and unsure about this treatment...will it work? is it risky? is it addictive? does it really cure rsd? etc etc...my parents dont want to rush me into it however dr rohr said that time is very important in this condition and treatment is very difficult after 1 year.

At the moment in my condition I am ready to do it if there is a good chance I will come out pain free..we just need to weigh up the pros and cons..

Would appreciate anyones comments who have been through the procedure and what it really entails and how they felt after...pain free? how long? etc etc...

Thanks,

Nigel

Dear Nigel -

Please see my PM to you, and forgive me as I borrow from parts of it it here.

While I have yet to have ketamine treatments due to glaucoma, you should be aware that following Dr. Schwartzman's lead, the 10-day outpatient ketamine infusion (200 mg/4 hr. infusion) has been widely adopted in the U.S., where Schwartzman et al showed, using at that time only 100 mg./4 hr. infusion, results that were significantly better than those obtained with the 5-day 'low dose" infusion, even at 40 - 50 mg./hr., especially in people who had RSD for more than a year. Compare, A Pilot Open-Label Study of the Efficacy of Subanesthetic Isometric S(+)-Ketamine in Refractory CRPS Patients, Kiefer RT, Rohr P, Ploppa A, et al, Pain Med. 2008;9(1):44-54, paying particular attention to the "Discussion" portion of the article beginning at p. 50, FULL ONLINE TEXT @ http://www.rsdsa.org/pdfsall/Kiefer_Rohr_Ploppa.pdf, with, Outpatient intravenous ketamine for the treatment of complex regional pain syndrome: A double-blind placebo controlled study, Schwartzman RJ, Alexander GM, Grothusen JR, Paylor T, Reichenberger E, Perreault M, Pain 2009 Dec 15;147(1-3):107-15, FULL ONLINE TEXT @ http://www.rsdsa.org/pdfsall/Schwartzman_Pain2009.pdf

And for a very recent article by Dr. Schwartzman et al, including both a discussion of the possible side effects of ketamine therapy and a detailed description, in the appendix, of the current out-patient protocol, see, The use of ketamine in complex regional pain syndrome: possible mechanisms, Schwartzman RJ, Alexander GM, Grothusen JR, Expert Rev. Neurother. 2011, 11;719-734 FULL ONLINE TEXT @ http://www.rsdsa.org/2/library/artic...rtrev.2011.pdf

So an important - but not necessarily determinative - question may be whether Dr. Rohr is able to offer the outpatient protocol, where it appears to offer the best chances for people who have had the disease for more than a year.

Mike


ps And thanks to the RSDSA for making full text copies of these and so many articles readily available! http://www.rsdsa.org/researchlibrary.html

pps Please check out Daniella's current thread, Those who have had ketamine? at http://neurotalk.psychcentral.com/thread150232.html

Nigel -

Before I appear resolved to prejudice you in favor of a hypothetical 10-day outpatient program, did Dr. Rohr tell you what the hourly target rate of ketamine infusion would be in his 5-day infusion program?

Mike


ps Just noticed in the Ketamine Coma Treatment thread a reference to Dr. Rohr doing an 18-day infusion. See, Post No. 5 at http://neurotalk.psychcentral.com/thread150454.html So apologies about jumping to conclusions re the length of the infusion.