A Warm Hello to All!

I have been away for quite awhile now. I cannot believe just how long it has been.

It's been a very trying time. A couple of family members have been in hospice and have passed on. A couple of people in my household have had surgeries. One has completely recovered and the other is still recovering, yet is doing very well.

I have been trying to keep up with it all, along with having more medical testing/work-ups myself. It's been somewhat stressful. Such is life for all of us.

In recent work-ups for additional neurological/neuromuscular conditions, I have turned down a muscle biopsy due to concerns about spreading of CRPS.

I did allow skin punch biopsies, which I felt would be okay since they were relatively superficial (in comparison to the muscle biopsy). I was so wrong! I went into a severe CRPS flare within 24 hours of the biopsies.

The conditions currently flared according to my rheumatologist are: CRPS, Psoriatic Arthritis, Fibromyalgia. I also have a chronic form (advanced) of an "idiopathic sensory motor axonal polyneuropathy." It's all a bit of a mess.

In the past, I have had an unusually brilliant neurology resident in charge of my case. He has left the medical center and I now have a clueless (yet very egotistical) resident who doesn't "believe in CRPS." He is focused upon disproving the former resident for some reason. He orders testing thinking he is disproving the former resident, when the testing he orders are old tests no longer used to diagnose CRPS. He becomes very angry with me when I very gently, yet firmly, tell him the tests he is ordering are no longer used for CRPS. Lol. (I have to pay the costs of the tests, so I am very interested in whether or not the tests are even pertinent, of course.) He refuses to order the tests as dictated to him, in front of me, by a consulting neuromuscular "attending physician, also the head of the neurology department." This is "insubordination," yet, he gets away with this because the "attending doctors" constantly rotate and I never see the same one with the resident, so each one has no idea what the prior "attending" has said/done. When I ask him if he is following through with the prior attending's directions, he simply says: "No. I see no reason for it." Huh? He will do "nothing" to help out. Other doctors want suggestions from Neurology. He says he is doing "nothing" to assist with treatment -- and he does "nothing." (This may be a blessing, all things considered.) All of my other doctors are disgusted with this resident's performance and with the dysfunction at the Neurology department at the local teaching hospital, as they have been looking to Neurology to help out and have been waiting for a long time, along with me. I am currently appealing my assignment to this resident (and to any resident), as my case has been with the department for over 20 years and is quite advanced. Residents, unless they are unusually insightful (and some are very insightful), are not helpful to me, nor to my team of other specialists. I have spoken, privately, with two different attending neurologists who state they will back my complaint. They have also told me the care in the Neurology department is only going to get worse due to the budgetary changes being made soon. They have said they, themselves, have been fighting the changes out of concern for patient care.

I am glad they have been so candid with me.
I will also be looking for care elsewhere, which will involve some travel.

I am lucky to have an extremely bright and talented rheumatologist, in private practice. She has multiple board certifications and leaves no stone unturned in her investigations/diagnoses/treatments. She, alone, decides how much time to spend with her patients. She spends many hours with each of her patients, carefully listening and gathering pertinent information. She goes the distance in helping to make her patients feel as comfortable as possible, exploring all of the pain treatment options available to her patients. She also knows her sciences, medicine and pharmacology extremely well. I have been under her care for over 15 years and am so grateful to have her helping me.

In addition to opiates, a steroid and an AED, I am now back on oral clonidine and tizanidine. Clonidine has very potent and very tough side-effects for me. I am again working with my rheumatologist and my compounding pharmacist, in hopes of finding some additional relief, especially at night. I had been using a ketamine-based mixture of a topical gel (ketamine, gabapentin and clonidine). We are adding to the mix to see if we can get more pain control.

I am often reticent to share details. I have chosen to share details in this post because I know others are also going through a lot in trying to find proper care. I am very sorry we all have this struggle, as we deserve better. However, I hope that in sharing we somehow help one another to see ways around obstacles to optimal care and/or feel some sense of solidarity.

In the meantime, much like my friends here, I am often biting on a bullet.

Love All Around,

DejaVu