Originally Posted by PurpleFoot721

Hello all,

As some of you know, I haven't been doing all that well, both emotionally and physically, lately, since my last PM completely gave up on me. He ran out of ideas, which was nothing more than throwing opiates at me, so he left me looking for a new PM team. Two weeks ago, I regained a little hope when I had a consultation with another PM that offered ketamine infusions at an outrageous out-of-pocket expense, only to have him tell me that my best bet was to try to go for SCS. There wasn't much talk at all about his routine of ketamine. It was all about his suggestion of the SCS, so my hopes diminished again.

Today, I had an appointment with PM number four. He went over my past medical history with me, ran his tests checking for temperature changes, skin changes, hair and nail growth changes..., basically the most thorough exam of all the PM docs I have seen so far. Then he asked me why I am still taking all of the meds if none of them seem to be helping? Good question. We are beginning to taper off all of my meds starting today. MS Contin is to be tapered down from 30 mg 4x daily to 30 mg TID starting today, then in 15 mg increments every week until I am completely off of them. Gabapentin is to be tapered down from 600 mg TID to 600 mg BID for a week, then 600 mg 1x daily for a week then completely off. Amatriptyline goes from 100 mg to 50 mg and I will stay there for now. He did give me the recommendation of going for SCS. He did say that he will give ketamine infusions if I really want to go that route instead, but thinks I would be better off with the SCS. We talked about both options, and as much as I really did not want to go the route of SCS originally, I agree with him that SCS sounds like it might be the better option for me. Tomorrow I get to make a couple of phone calls, one for the required class, one for the required psychology appointment, and I might as well call my insurance company to find out if there are any pitfalls I might come across with them. They use Nevro SCS devices, which are a high frequency device to eliminate the paresthesia that most SCS devices cause. The device uses wire leads, but I guess that due to the higher frequency, if there is a small amount of movement of the leads, the device will still work without any problems.

I did ask about LDN. His response to that was that they have tried that in the past with some patients with no positive outcome. He did mention that a previous patient of his that is now going to the Cleveland Clinic was put on a medication that has helped them called Terazosin. He was really anxious and exited to try to see if it would help me in any way. I guess it is primarily used for high blood pressure but it is supposed to help open the blood vessels and allow for more blood flow. I figured why not try. I have never seen a doctor get so excited before. He put on a great big smile and just kept saying "Oh cool, cool cool cool. This is so exciting. Cool, cool cool."

Today my spirits were lifted up again. I am starting to see some hope again. It isn't exactly the route I originally saw myself going down, but I feel like I am i good hands with PM #4