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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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#1 | ||
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Hi everyone, I wanted to tell you about my appointment with the VERY BEST PM/NEUROLOGIST I have ever met!! He is here in FL, but I had to travel 70 miles to see him (which is a lot of hard miles for me) but I would have traveled ANYWHERE to have met him. Faith in humanity, specifically PM Doctors, restored!! Let me tell you my experience. The staff was nice enough checking in. I was called back and greeted by a medical student (nooooooooo) who would first be doing an examination on me......(nooooooooo. I've been to that party many times before and it wasn't pretty.) She carried on, asking questions, COMPLETELY unfamiliar with RSD. I felt terrible already from the long drive, and her "exam" was becoming so painful I felt like throwing up. She took tons of notes and said she was going to go talk to the Dr. and return with him. To my amazement and delight in walks the MOST (BY FAR) compassionate Doctor I've EVER met!! He took one look at me and with the tenderest of eyes introduced himself, and began to ask me questions that NO Dr. has ever asked, and he REALLY listened to my responses! Then he began teaching the student and I both with such kindness (impressive.) He pulled out an expo marker and began to circle parts of the body on a large dry erase board with a front and back picture of the body printed on it. Without any boastfulness he said, Dr. Schwartzman, who is a renowned RSD specialist, was my boss for several years. I was trained by him, then looking at the student he said, "you never want to touch a patient that has RSD. You want the patient to call the shots on their comfort level of you touching them in anyway. It's like if you have an itchy foot, you could scratch it and get relief, but if someone else scratched your foot it would most likely tickle. With an RSD patient, your touching them could send their pain through the roof." Ahhhhh I seriously thought there was an angel in the room. He said to the student, "I'm going to show you some things to look for with RSD patients, and then he began asking me questions. 110% agreeing with my answers, and explaining my complete diagnosis to both the student and I. He said, "she has total body RSD. That means out of 3 levels of RSD, she is level 3, and this is why." He began pointing out all the reasons without touching me. I was in complete shock at his understanding of this disease. The student in there turned out to be a huge blessing because the Dr. was breaking things down for both of us really. Then we went onto medicines starting by him asking me what I felt ever worked or didn't (wow, so much interaction was blowing my mind.) He than started writing a huge list of medicines and procedures and why they would or would not work for me (mainly why they would not. He did that very compassionately) Then he opened the floor for me to express my concerns. One of which was severe eye pain, vision loss, and forgetting words, people, and sometimes even how to talk. He actually got a little emotional and said, "Your RSD has spread to your face, I can see it. I can also look at your eyes and know it has spread there. We can't stop this process now that it has left your central nervous system, we can just try our best to make you feel comfortable." Then with even more compassion he said, "the other symptoms you described tells me it has begun to affect your brain. I am so sorry. Again, this is our objective, to try to make you as comfortable as possible." After an hour and a half visit with him. (Not including the student time.) We came up with a treatment plan that I felt comfortable with. He bid me farewell by sticking two fingers out and said "I would like to shake your hand, but you only do what you can comfortably." I actually started to cry and said, "you could never understand the blessing this appointment with you has been." He then just smiled very humbly and warmly. I was in my wheelchair leaving, and he asked if he could assist me in any way. He said, "I want to see you in a month, but at my closer office. I will walk up to the front desk and tell them to fit you in my schedule there so you don't have to travel as far." He did just that. I left with my husband, and I was just in tears. Tears because the possibility of completely losing my vision and forgetting my sweetheart and young children (which has already happened a few times this week) terrifies me, but honestly there were many more tears of gratitude to have found such a compassionate soul. I will be following this Dr. wherever he goes
![]() Sent from my XT1028 using Tapatalk Last edited by stillsmiling; 09-12-2015 at 04:35 AM. |
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#2 | ||
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Still smiling,
Your post gladdens my heart. I hope this doctor is the one who will help you. |
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#3 | ||
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Wow, so very happy that you have found such a great doctor to treat you. I can tell by the tone of your post that you are beyond overjoyed.
The fact that he was trained by Dr. Schwartzman speaks volumes to his experience level with CRPS. Wishing you the very BEST moving forward with your treatment plan. Keep us all posted! |
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#4 | |||
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Senior Member
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Stillsmiling,
I am so happy you found a healer who is interested and truly cares. That makes such a difference. Doctors of that caliber are hard to find but they are out there and Wow! What a difference having that level of compassion in your provider. He has seen beyond your illness to the beautiful person suffering underneath it. What a special man. I am sorry that there is less he can do for you due the progression. I know that must have been heartbreaking. Still sometimes it is good knowing honestly what you have to deal with and face. So good that he is willing to be on your team and work to keep you comfortable. I am sending extra hugs today. I know that was stressful on many Levels but it sure sounds like it was worth it. ![]() ![]() ![]()
__________________
Littlepaw Shine Your Bright Light |
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#5 | |||
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It is so nice to hear good news on these forums.
I am thrilled for you that you found this gem of a doctor. It is great to know that docs like him still exist. Thanks for sharing your good news. |
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#6 | ||
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This is indeed wonderful news to our ears and especially you!
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"Thanks for this!" says: | DejaVu (09-12-2015), Littlepaw (09-12-2015), mama mac (09-12-2015), RSD ME (09-12-2015), stillsmiling (09-13-2015) |
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#7 | ||
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Stillsmiling,
Overjoyed for your success. It gives me hope that good MD's do exist. Persistence seems to be key. Wish I could come to Florida. Saddened by the assessment of your CRPS and the pain you are going through. At least now maybe someone compassionate and knowledgeable will provide the best care possible given what we know about this disease. All the best to you and yours. Warmest of thoughts, mac |
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"Thanks for this!" says: | DejaVu (09-12-2015), Enna70 (09-12-2015), Littlepaw (09-12-2015), RSD ME (09-12-2015), stillsmiling (09-13-2015) |
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#8 | |||
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Senior Member
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Hi Stillsmiling,
Your mood indicators says you are "Happy!" ![]() I am very happy for you! ![]() Thanks so much for sharing your experience with us. It's uplifting to the whole community to know you have felt understood, have been treated well, and have some renewed hope. Littlepaw had mentioned the term "healer." I feel the same way. We often meet people in the medical profession. We feel very blessed when one (or more) are "healers" or "healing in nature." In Celebration, ![]() DejaVu |
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"Thanks for this!" says: |
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#9 | ||
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Junior Member
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I am so happy that you have found a doctor with such a wonderful combination of being a great doctor and person as well.
That makes all the difference in the world. I am so blessed to also have such a wonderful , knowledgeable , kind, and caring PM doctor too . I appreciate having him so very much . I thank him every chance I get. |
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"Thanks for this!" says: |
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#10 | ||
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Thank you guys so much for all of your well wishes and encouraging words. I am so grateful for all of the support and understanding I receive from ALL of you! Huge group hug
![]() Sent from my XT1028 using Tapatalk |
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