I haven't been on in a while because I just have not been feeling real great both emotionally and physcially. I had my second appeal hearing with Blue Cross on Friday and the MD (director) of my appeal could not have been more of a pompouos ***! (sorry for the language).
He treated me like I did not know anything. He asked me why I was not in Dr. Schwartzman's ketamine research that was currently being done. I asked him if he read the research I had sent him previously for which I got a rude I read everything. I told him I thought the research I sent him was done and quoted in the literature. He said the literature he was reading was updated 10/09. Turns out at the end of the meeting he realized it was last updated in 4/09.
If I told you what I truly felt about the guy, I might not be able to post anymore. He actually tried to tell me I might be in the study and not know it. I'm a nurse and know that this is impossible but ask me why all I could do at the hearing was cry (It seems I do a lot of that lately, like right now). Who do these Dr's think they are. I know he is working for Blue Cross and it is his job to save them money but that is no way to treat people. Let along sick people (jerk). I am not holding out too much hope that my treatments will be reinstated. By the way I have a sister-in-law that is a doc and is going to help me send a complaint to the ethical committee of the AMA. (my first time ever doing anything like that)

I am so tired of being sick and tired. I try to take each day as it comes but lately I keep thinking how I'm going to live like this forever. The pain is so bad most days. Sorry to sound so depressing not my usual self. I am starting to see a therapist next Monday. I am hoping it helps me cope. Ok enough griping!

I saw Dr. Schwartzman on Monday. He changed my meds to Neurotin 300mg at bedtime and Elavil 25mg at bedtime. He told me to stop the Ultram I was taking (50 mg two times a day). He said it will end up tearing up my stomach. I was taking Nortriptyline 100 mg before with the Ultram and for the last two days the pain has been worse. I also have a feeling in my throat in chest that feels like I have been out in the cold breathing in cold air (sound familiar to anyone?) Does anyone know if all the increased symptoms may be my body adjusting to the change in meds? Any info would be appreciated!

I thank god there are people who I can write to who understand. Everyone around me really trys but unless I experienced RSD I could never have imagined what it does to a person life.

Hanging in there (like we have a choice!)
hopeful not sticking true to my name today am I?

I'm so sorry you're going through this with Blue Cross and this obviously ignorant doctor. It's terrible to be in so much pain and have to be your own advocate. I've not had this experience, and hope that I never do, and even more hope that you'll find the light at the end of the tunnel soon.

I know what you mean about the crying. This disease is so personal, and so totally misunderstood. I know how hard it is to face the ignorance, knowing that the person you're attempting to convince of your reality could never begin to know what you're dealing with. It's so likely that this jerk of a dr could deal with the level of pain you deal with everyday; it's maddening.

I was in a flare up for the last 3 weeks or so (had a nerve block today and am feeling so much better already), and yesterday had an argument with my daughter. Of course, I cried. Emotions run so high when the pain is bad. And of course, her first reaction? "Don't try to make me feel guilty by crying." Made me cry even harder; it just brought home how totally disconnected my family is from this disease and what it does to those of us who have it.

I'm praying for you. I know how hard it is to keep your head up and to keep trying to just live, let alone find a little happiness and comfort. Still, you have to try. Try to center yourself, spend some time with a cup of tea and something, anything, that makes you feel good in your heart and soul.

HI,
I am sorry to hear about you and your daughter. It does get hard trying to help others understand. As you said the disease is so personal and misunderstood.
My daughter was so angry with the BC doctor she said I hope he gets RSD. I said I would never wish this on anyone no matter how cruel they are.
Thanks you so much for the prayers and listening. I don't know what I would do if I didn't find others who know what its like.
I am feeling a little better emotionally today but bad pain the weather is terrible here. Suppose to rain for 4 days.
Thaks again,
hopeful

I don't think that anyone can hurt you more than one of your children. Not your spouse, siblings or parents. But a child, wow, the punch they can pack. My heart goes to you.
(They are learning, and don't know what they do, they love you!)



I've also never heard of Blue Cross being so difficult..
Very upsetting.
We hafto live with this day and night, for as long as we're going to live.
And, they want to argue about dollars?
Heartless Scoundrels..

They put into Dr S's Lidocaine infusion, for ten days, no problem. That was quite a few years back.

We must Endeavor to Persevere.

Wish I had a Magic Wand!

pete
asb

Pete -

It bears noting - and we could conduct a poll on it if need be - that Dr. Schwartzman's office appears to have a special way of ultimately working their way with insurance companies, at least based on ancetodal reports. (I know that, when he was treating me, I had no problem being approved for in-patient lidocaine and then low-dose ketamine infusions, although I never made it to the latter due to a pre-existing glaucoma diagnosis.)

It's one of the many things that persons who are fortunate enough to be his patients have to be greatful for.

Mike

Hi Mike,
Blue Cross did originally pay for my ketamine treatments then decided they were experimental/investigative. The most Dr. S's office could do for me was to send me his lastest research findings in hope that would help. It didn't seem to have any bearing on BC decision. I just received the answer to my appeal over the weekend and they denied it again.
Hopeful

Hi dessteele,
I just wanted to tell you how your response and encouragement to hopeful touched my heart. How comforting you were to her. I loved the thoughts you shared with her and in turn encouragaed all who read it.
How long have you had RSD? Flares are tough to deal with that is for sure. Hopefully the nerve block is continueing to help you. I have never had a nerve block. It was 4 years before diagnosis-now full body, internal and 14 years. Now I am aware I got it following benign breast tumor. Swollen arm, withdrawal of green fluid and frozen shoulder. Dr. got rid of me-no antibiocs - sent to Rehab Dr. to oversee physical therapy. It took 100 treatments plus I did massage therapy on my own before the p.t. They wanted to operate and break my shoulder, but I said NO and continued the massage therapy and p.t.
I called Blue Cross and told them I was sent to orthopedic surgeon who wanted to operate and would still need p.t. after surgery. Would they like me to do that or pay for massage therapy????? They came back on the phone and said, yes, they would be HAPPY to pay for massage therapy and continue with physical therapy. Not knowing I had RSD, I'm so glad I didn't have the surgery. I've continued with massage therapy.
When I got RSD, my daughter was 16. Our family were very active, water skiing and snow skiing, traveling, tennis 5-6 days a week. aerobics. I had a couple of remissions, then injured in my hand while water skiing-was misdiagnosed with rheumatoid arthritis. My RA tests were negative, so I went back to Oregon to sports injury group. The hand specialist said RSD within 1 minute. sent to hospital for nuclear med tests that were positive, started physical therapy next day and Doc ordered a tens unit. Came back to Arizona and found neurologist and orthopedic hand Dr. One of the bests things the ortho did was desensitization. My hand is permanently paratially paralyzed, but at least got some use back and can cut my food, etc. moved other other hand, then full body. It was so hard on my daughter, she wanted me back, but not possible.She is 30 now and married to a wonderful person. She finished college two months before the wedding. She is a court reporter and has done RSD deposition. He is a commercial pilot. My husband has come a long way in understanding. I'm so very grateful-have caring friends that come from Oregon every year and new friends here and wonderful friends on this site.
My Dr. just finised a trial study on 200 people, and I'm on a new drug and sleeping 10 hours a night. Because of restorative sleep, I now have cut my pain and anxiety meds in half. I'm starting to be more active, driving again. Hope to travel a little. Feel like getting some of my life back.
Our monthly RSD support group meeting Saturday had a RN nurse speak on superfoods and high antioxidant foods. It was very good. I also attended the yearly RSDSA meeting here in Scottsdale.
For me, music, meditation, prayer, scented candles, reading, journaling, stretching are all helpful distraction. I also love to read. Epsom salt bathes, essential oils are all calming. massage therapy. swimming has kept me mobile.
There is a website rsdrx.com from Dr. Hooshmand who is now retired, but still has the website up. Under puzzles List, he has 146 questions from patients and his answers. Very good.
Please let me know how you are doing. I find this forum full of loving, kind, compassionate friends. Plus, we need each other. How old is your daughter. My daughter is grieving too. They moved in with us a few months ago and it's been wonderful. They sold there home, to put Lucas thru flight school and then he became a flight instructor then hired by the airlines and moved to Chicago for a year. They moved back and he commutes to Chicago. and our daughter still works for the same court reporting firm. They have a miniature min pin and we have a cat. The cat doesn't like the dog, and the dog wants to play with the cat. We have two floors, so they each get a floor. My cat sleeps with me, and I find so much comfort from both pets.
I like your phrases of this disease being so personal, and trying to center ourselves. Thank you for your insight.
Take care, and hope you are doing better. Your friend, loretta soft hugs

Hi Hopeful and Welcome,
I'm glad you could vent with us. We desparately need to do that at times.I'm so sorry about your battle with Blue Cross. It's good you are filing a complaint. It was 4 years before I was diagnosed. I had a wrong diagnosis and cost me full use of my left hand. It is paratially paralyzed due to delay of treatment. But I'm grateful I am mobile. I've had RSD 14 years and now full body and internal. I have a wonderful Dr. and am doing the best in 14 years.
I got the flu and was sick 3 months. Immune system is shot.
How did you get RSD and how long? What part of body? Mine was right after surgery-got frozen shoulder-too a lot of p.t. and massage therapy to get use of shoulder. Was in remission and then got frozen shoulder in the other side.
Are you seeing a psychologist? For me, that was very important. The loss we experience is really like a death. We grieve for the life we used to live. We go thru the stages of grief and it is helpful to have someone to help us.
Journaling has been a big help for me, writing down my feelings and pain, both emotionally and physically. My favorite music is a comfort for me as well as scented candles and reading, watching tv, writing cards to my friends.
Please know we all care what you are going thru. I agree with you, we could never understand what RSD is like unless we have it. This forum has wonderful caring and kind compassionate friends. They truly know what it is like to have so much pain, jolts, electric jerks, pain, burning hands and feet or cold to the bone pain. Take care of yourself. your friend loretta soft hugs

Hi Loretta,
I have no idea how you have gotten through 14 years of RSD. God bless you! They are not sure how I got RSD. I had an injury 15 years ago (torn a muscle in my low back lifting a patient) and they think maybe some of the symptoms I had back then were related to RSD. I also had a shin fracture about 2 years ago now and what ortho thought was a tear in my miniscus following the fracture (long time runner) and did not do a MRI because he said he would treat it with a shot of cortisone either way. I am now wondering if maybe that was the beginning of all of this. I believe they say you will have swelling close to the original injury with RSD.
Mine spread very quicklyl from my feet to legs, to arms and hands and right side of face. My origianl neurologist did a small nerve biopsy that was positive for small nerve neuropathy. Went for second opinion with Dr. Schwartzman and he diagnosed RSD. It has now moved to my chest and back. So after all that I guess the answer to your question is I have full body RSD.
I am actually seeing a psychologist on Monday for the first time. I know I can't handle this without some help. I am definitely greiving the life I use to have.
Thanks for all the kind words and just being ther.
Hopeful

what a night mare, I think your venting is mild considering what you have been through --mine would be considerably worse. I am shocked to hear you are not on any pain medications?.. I dont know how you are surviving. The cold air in your lungs is not familar to me and I thought I had felt everything rsd has to throw, but Im afraid I cant help you there. I'm sorry I hope someone else can.
I am confused about your meeting , I did not know your goal and could not figure out what the doctor was talking about- all sounds so combatitive from the doctor. Almost competitive. Hope things improve. cz