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

I am sorry for all that you are going through...it's always harder when the medical side of things is all messed up. I hope you are able to see a better doctor soon. Thank you for sharing your situation with us...I truly believe that through sharing we are able to help each other.

My Tizanidine is starting to kick in so I better put the phone down and let it do its work. Take care and keep us posted on how things are going. Hugs.

Hi Catra,

Thank you.
I find it difficult to read a lot of detail when I am in significant pain, as my own attention suffers some during these times. Thus, I generally try to keep posts shorter for everyone.

The doctors, both resident and "attending" who had diagnosed me are gone. They have moved on to greener pastures. Residents generally move on. We lose attending physicians constantly.

Not too long ago, all staff of the M.S. clinic had abruptly resigned. Nobody was left to staff the M.S. clinic.

The truth is: No patient at the neurology clinic I have mentioned is getting continuity in care. Every clinic day is supervised by a different "doctor of the day," an "attending" who oversees the residents.

I have been there when the inexperienced sleep neurologist is the supervising doctor of the day (including supervising neuromuscular cases and more). She looks at my case, refuses to do an exam (I have asked her to complete a neuro exam), shrugs her shoulders, says she has no idea what to do and then.... tells me to go elsewhere. She should be referring me to neurologists who specialize.

We have some very well-trained specialists here. However, the experienced neurologists have been ordered to do more research and less patient care, so they must cut back on patient load. This is a medical school, a teaching hospital. Care here should be outstanding and cutting edge. It's horrible care and neurologists, themselves, admit this.

When I do see an "attending" who orders meds or tests and when I go in for follow-up, I see the resident and a totally different "attending" who often says s/he has no idea why the prior supervising "attending" has ordered whatever s/he has ordered. It's insane. The residents do not receive any continuity in supervision, either. It's all so "scattered" and gets nowhere.

It's not difficult to understand how to diagnose CRPS. Youtube videos clearly explain this.

In my case, the resident has a need to disprove the former (brilliant) resident. He spends his time trying to disprove a diagnosis, while not doing anything to prove an alternative diagnosis. He says he has no idea what is wrong, yet stays heavily invested in disproving a diagnosis instead of proving a viable alternative diagnosis. It's a waste of time and of money.

My PCP, my ortho and my rheumatologist all stay with the CRPS diagnosis, as they have seen me on a continuous basis over the past 15-20 years. They would like some recommendations for care from Neurology, info they will likely never obtain from this Neurology department.

We must find the help we need somewhere. It can be so very frustrating.
Someone has to write the scripts, topical and otherwise, to help me manage the pain. Luckily, my rheumatologist will go the distance.

I am grateful for the few angels out there, those willing to go the extra mile to help out!

Love All Around,

Sadly in our messed up medical system we all must advocate for our own care, play along when we must and fight when needed, dealing with the insurance craziness along the way.

You are a great advocate for your care, think of those who are not so well educated or perhaps don't speak the language trying to deal with these situations. That's what I always remind myself of when I'm banging my head against all the many walls of the
'system'. I do hope you can actually get a competent neurologist.

Hi Becca,

You make excellent points.

I have been a very strong advocate for many in the past.
I find I have less and less steam to advocate for myself and for others as I age and as my conditions progress.
It can become a bit demoralizing after awhile, especially when it is a chronic problem within the same department for years on end.

I think we all feel for people who have more barriers, whatever they may be, to advocating for themselves. It's an awareness I both welcome and find disheartening. So many people, especially people with chronic and/or complex conditions, get lost in these systems of health care.

There is a patient advocacy office within the university health care system, where patients are encouraged to share their concerns; however, at the same time, every doctor I have talked with tells me the use of the "patient advocacy service" tags patients as "trouble makers" for the whole system. It's a catch-22. Patients voicing valid concerns are not "trouble makers," and it's unfortunate they are tagged as such. : (

I feel there will come a time when more doctors revolt against the broken system. They now share openly about their own unhappiness with being told how to practice medicine, being told they cannot admit a patient to the hospital when they see a need to do so, etc.

I have the best luck with experienced private care specialists. They can choose to practice however they want to do so. They are not told to keep appointments to an average length of 12.5 minutes. Lol. However, "private practices" are becoming increasingly scarce.

One of the problems in this area is: The teaching university is buying up most of the private practices. Doctors have been telling me for over a two years now there is a "backroom deal" in the state Senate/House with the goal of having only one healthcare provider and only one insurer in this state.

I have been watching the private practices, the strong competitors to the university health care system, so many of them now bought out by the university. I have been somewhat surprised any entity can legally create such a "monopoly" in any business, including in health care. I believe in healthy competition.

My heart goes out to many needing better care, while falling through the many gaps within these medical care systems.

Love All Around,

Hi Deja Vu

Welcome back - you've been missed around here. Sorry to hear of the family and personal tribulations you've been through.

As usual your perceptive observations of the medical system (such as it is) and wise advice to those who are struggling are valuable to us all.

Keep biting on that bullet and hopefully your life will quieten down a little and we'll see you here more often. Take care.

Hi Bluesfan!

Thank you for the welcome.

Life had become very hectic in a hurry. I almost could not believe all of the events taking place. It was exhausting. However, all is well.

“Behind the veil of each night, there is a smiling dawn.” - Kahlil Gibran

I have missed being here. So many members here have crossed my mind, have been on my heart, non-stop!

I hope to be able to sign in more often now.
I need to catch up on my PMs. I hope to do so by the weekend, at the latest.

Great to hear from you, Bluesfan!

Love All Around -