A Warm Hello to All,

My apologies for my absences and late responses.

The recent flare has been a significant challenge. This has been the most severe flare in years.
My PCP, my rheumatologist and an orthopedic specialist have been involved and doing their best to help out, which I appreciate.

The Update:

My recent foot injury is currently ruled a mid-foot sprain and is improving.
Ortho has referred me to PT/AT to see if we can strengthen both feet/ankles.

I am almost done with Lovenox injections, taken for superficial clotting issues in lower leg and foot.

I had sworn off clonidine, yet had to go back to it, as I'd needed it to offset the severe pain. I keep the dose very low, 1/2 of 0.1 mg twice daily.

(I am on opiate meds as well as prednisone and Depakote.)

I met my new neurologists this past week. One of the most frustrating issues with neurology has been the fact that there has not been continuity of care. A resident is assigned and then it's a toss, at each appointment, as to which Attending Neurologist one sees. It's absurd to follow a case without continuity.

I was sweating it out with the new resident, as he is constantly assigned to my case, until he leaves the hospital. He did a very thorough neuro exam; yet, he kept saying he had no experience with CRPS and would not feel comfortable prescribing even topical ketamine, ever. Ever?

He clearly did not realize the extent of my history. He'd commented there was still lots of reading for him to finish. Yes, indeed.
(I cannot bring him up-to-date in a 20 minute appointment and I told him so. I am made to wait for 6 months for an appointment and then told we cannot finish the appointment because not everyone is up-to speed on the case? He was starting to look very frazzled. I then told him it would be a lot easier on him if neurology scheduled more frequent appointments. I'd added the fact that I also need the follow-up care.)

When the Attending Neurologist entered, everything then changed.
He is new to our area.
He looked at my feet and noted the color changes (purple at that point).
He examined my feet and noted the swelling, the weakness, etc.
He examined me head-to-toe. He was very kind, very thorough, very insightful.

He said, " There is this condition, called CRPS. I suspect you have this, in addition to your other issues." (What a relief.) He could see many tests had been done and many had not been done. He is so new to this area, he was not sure of which tests would be available here. He is ordering (or has ordered) as many as he feels are warranted at this time. I do not yet know all of the testing he is ordering, as he was staying late with the resident to go over my chart, in order to list the tests he wants done.

It's complicated, no doubt, as I have multiple conditions co-occurring.

He added an AED named Aptiom to my meds.

So far, I know I am scheduled for a bone scan and another EMG.
He is also testing autonomic functioning.

I had addressed the lack of continuity of care. I gave him examples of the extremes I'd dealt with in different doctors. He cringed and told me he would follow my case himself. (I hope he can do so.)

I am very sedated with meds. Yet, I have much less pain. It's still very painful at times; yet, not as severe as it has been. I cannot function well on this amount of medication. I know it's necessary for now. I hope we can drop some meds, soon. I find the clonidine very depressing. It feels like the Aptiom adds to the sedation and to related blah. Patience....

Thank you for your patience. I still have many PMs awaiting a response. I appreciate your love and concern and will be writing back to you as soon as I can do so.


Much Love to ALL,
DejaVu