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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)

Would you see a doctor who believes in one illness and not the other

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Unread 02-10-2013, 12:24 PM   #1
alaska49
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Default Would you see a doctor who believes in one illness and not the other

I have been fighting RSD since I for 10 years, 5 years with it just in the foot and 5 full body. 2 years ago I was also diagnosed with sarcoidosis in the Liver and Lungs. Now its starting to spread more and getting worse so my doctor thats taking care of it wants me to see a ruematologist at temple university. The problem is the doctor that I met there believes and wants to treat the sarcoid but doesnt believe RSD exsists and thinks its all mind over matter. The sarcoid is now in the stomach and they think its moved to the nerves as well so I do need more help but I dont think I should see a doctor who might help he sarcoid but ends up making my RSD worse. When I told her what I can and cant do because of the RSd she is like you can do it and must. For 2 years I was bed ridden and in a wheelchair but now I am walking again and wearin shoes but she is like I must do more no matter how much pain. Like I cant be in water as it sends me into sevee spasms throughout my body, my body just curls and shakes, so I sponge bathe and wash my hair in the sink but he is like I must go to the pool and stay in whether I spasm and cry in pain.I am jst worried this doctor will make me go backwards instead of forward as my RSD is conserned. Monday I am going to try to call my doctor and ask if I can be refered to another doctor at temple and one primarly will accept my 2 illnesses not just one. My mom didnt like the doctor either as when we would talk to her she would lay all over the table like she was bored and she wouldnt stop playing with her hair. I know my RSD doctor wouldnt want me going backwards as he has worked hard getting me here I am today. I just dont know how I would get the new doctor to understand RSD as when I asked her if she knew about it she was like I heard of the name but didnt know what it was or meant. And when she was examining me, my body wa turning colors and she was like my nerves are ove reacting but that its normal for young people in there 20's to do that. I dont know how some doctors can be so idiotic. What would others do? Temple university is renound for treating sarcoid, Iam hoping that there maybe a doctor that can understand both illnesses instead of just dismissing the RSD part as its just as dibilitating or even more dibilitating then the sarcoid.

Samantha
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Unread 02-10-2013, 01:15 PM   #2
catra121
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Based on your post I think you know the answer to your own question and it is the same as I would do: you need to find another doctor. A doctor who is not well informed about RSD, doesn't believe it exists, and isn't willing to listen to their patient about their needs and limitations is NOT a good doctor. Plain and simple and I wouldn't trust my care to them and I don't think that you should either. Find another doctor. Take care and good luck.
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Unread 02-10-2013, 01:44 PM   #3
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How horrible! I'm so sorry you must go through that RSD is real, and reading your post brought tears to my eyes. I don't know how close you are to your dr, but that shows so little compassion. You need a doctor who will treat for oth illnesses and with respect.

My former pain management dr told me I failed a drug test once. Well, I have never so much as smoked marijuana or even regular cigarettes so I knew I hadnt. Come o find out, I was taking phenargren for nausea and it causes a false positive. But he was very ugly and disrespectful. Treated me like a druggie. I went to a clinic, paid for another sample, came bak completely clean and he still didn't believe me!

I got a new dr. I've been with him over a year. He's wonderful. There are kind drs. Unfortunately sometimes there are cruddy ones to sift through!

Hope this helps!



TK
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Unread 02-10-2013, 03:02 PM   #4
alaska49
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Thanks for your posts, I do know what its like with bad doctors already as I have seen over 197 doctors in these 5 years with half of them not believing RSD and thought now it was finally all over. I just didnt expect to have issues with a doctor about RSD because of the sarcoid. My pain specalist I know wouldnt like her either and wouldnt be happy with anyone hindering my recovery. I know my other doctors need help treating the sarcoid but I just hope they understand they need to refer me to a doctor that can accept both illnesses. Fighting the RSd and the sarcoid is so hards at times, specially when the sarcoid flares then it flares the RSD. The doctors are just worried since the sarcoid is spreading that it may go to the spine or brain if not under control, the sarcoid fevers are getting worse with them getting as high as 105 so I do know its important to stop it. My pain specialist and pulmonary doctor are great and I am very close to them, my pain dr is like my grandfather, the whole st luke hospital team are great and all understand all the conditions I deal with they just arent as advaced with wide spread sarcoid as temple university is. I just hope my dr and I can find another dr at temple that can help the sarcoid and not make the RSD worse. The dr at temple made my mom really mad as when she entered the room she looked at my mom and was like your depressed and needs help and then told her she needs to leave the room and was like your daughters old enough to be without you and that she shouldnt be there. But with out her I cant get there as I cant drive and need to be helped with walking to make sure I dont collapse. My mom may be a little depressed with all her and I have to deal with but for the dr to say what she did was un called for. I wonder somtimes how some of these people can even be doctors, the nurse there knew all about RSD but the dr totally clueless.
Thanks again

Samantha
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Unread 02-10-2013, 06:25 PM   #5
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Quote:
Originally Posted by alaska49 View Post
Thanks for your posts, I do know what its like with bad doctors already as I have seen over 197 doctors in these 5 years with half of them not believing RSD and thought now it was finally all over. I just didnt expect to have issues with a doctor about RSD because of the sarcoid. My pain specalist I know wouldnt like her either and wouldnt be happy with anyone hindering my recovery. I know my other doctors need help treating the sarcoid but I just hope they understand they need to refer me to a doctor that can accept both illnesses. Fighting the RSd and the sarcoid is so hards at times, specially when the sarcoid flares then it flares the RSD. The doctors are just worried since the sarcoid is spreading that it may go to the spine or brain if not under control, the sarcoid fevers are getting worse with them getting as high as 105 so I do know its important to stop it. My pain specialist and pulmonary doctor are great and I am very close to them, my pain dr is like my grandfather, the whole st luke hospital team are great and all understand all the conditions I deal with they just arent as advaced with wide spread sarcoid as temple university is. I just hope my dr and I can find another dr at temple that can help the sarcoid and not make the RSD worse. The dr at temple made my mom really mad as when she entered the room she looked at my mom and was like your depressed and needs help and then told her she needs to leave the room and was like your daughters old enough to be without you and that she shouldnt be there. But with out her I cant get there as I cant drive and need to be helped with walking to make sure I dont collapse. My mom may be a little depressed with all her and I have to deal with but for the dr to say what she did was un called for. I wonder somtimes how some of these people can even be doctors, the nurse there knew all about RSD but the dr totally clueless.
Thanks again

Samantha
Hi Samantha, TRUST YOURSELF! Her rudeness and disrespect is inexcusable!
both to you and your mom!
I looked up sarcoid and now understand more why you are looking for best treatment available. And with it flaring your rsd, you need a treating dr. that understands both. Just one of these disorders is a hand full to deal with. I'm so sorry you are dealing with both. I know you are so grateful your Mom is so supportive.
Take care and let us know when you find a dr. at Temple. If you don't find a Temple University doc, can your current drs. do the more advanced treatment?
What is the latest treatments? loretta
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Unread 02-10-2013, 06:25 PM   #6
ginnie
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Default Hello samantha

RSD and CRPS are real. Not in your head. I definately would NOT see a doctor who has no knowledge of it, and treats it as a mental defect. That is not fair to you. Keep searching, and asking our members what doctors they see in your area. It is a waste of money, time, and your sanity to go to a physician that cannot treat the whole person. I do wish you all the best. I am so sorry this happened to you. I will keep you in my thoughts and prayers. ginnie
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Unread 02-10-2013, 07:52 PM   #7
alaska49
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Thanks everyone for your replys.
loretta, my doctors at st luke dont seem to think there is anyone there at st luke that does advanced treatments for sarcoid. It took them even a long time to diagnose the sarcoid y oxygeon levels just started going down to the point I wasnt getting enough oxygeon to my brain that I didnt even know who I was at some points so I was hospitalized to get oxygeon it took like 3 months until my mom had enough and went to the doctors and asked why would a 24 year old need 5 liters of oxygeon there must be a reason. So a pulmonary dr finally did a exray and found the granulomas in my lungs along with alot of imflamation, and with my liver having issues they look at that too which was worse then the lungs. For treatment I have been on high doses of prednisone which helps and did shrink the sarcoid in my lungs but isnt stopping it from sreading. They have tried another med but it didnt help and the side affects were to great. I have oxygeon tanks with me for when Iam in need of it. So now they dont really know what else to do. At temple for bad sarcoid they do the IVIG treatment which I am actually hoping I could try as I know they are trying for RSD as well and for some is helping. I guess when it comes to sarcoid it is rare for to be in more then one place but my doctors think my RSD has weakened my body and immune system that it just cant fight it. Well I will call my pulmonary dr and pain dr tomorrow and see if they can look for another dr at temple that is willing to deal with both diseaes. Thank you everyone! Hope your all having a good Sunday!

Samantha
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Unread 02-10-2013, 09:47 PM   #8
reluctant@thetable
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Quote:
Originally Posted by alaska49 View Post
Thanks everyone for your replys.
loretta, my doctors at st luke dont seem to think there is anyone there at st luke that does advanced treatments for sarcoid. It took them even a long time to diagnose the sarcoid y oxygeon levels just started going down to the point I wasnt getting enough oxygeon to my brain that I didnt even know who I was at some points so I was hospitalized to get oxygeon it took like 3 months until my mom had enough and went to the doctors and asked why would a 24 year old need 5 liters of oxygeon there must be a reason. So a pulmonary dr finally did a exray and found the granulomas in my lungs along with alot of imflamation, and with my liver having issues they look at that too which was worse then the lungs. For treatment I have been on high doses of prednisone which helps and did shrink the sarcoid in my lungs but isnt stopping it from sreading. They have tried another med but it didnt help and the side affects were to great. I have oxygeon tanks with me for when Iam in need of it. So now they dont really know what else to do. At temple for bad sarcoid they do the IVIG treatment which I am actually hoping I could try as I know they are trying for RSD as well and for some is helping. I guess when it comes to sarcoid it is rare for to be in more then one place but my doctors think my RSD has weakened my body and immune system that it just cant fight it. Well I will call my pulmonary dr and pain dr tomorrow and see if they can look for another dr at temple that is willing to deal with both diseaes. Thank you everyone! Hope your all having a good Sunday!

Samantha
Samantha, just remember YOU are in control of your care. If you want your mother to be in the room with you, tell the doctor that she is there for you and you want her there with you. If the doctor won't respect your desires, time to walk! You don't need added stress.
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Unread 02-10-2013, 11:17 PM   #9
loretta
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Samanatha, hope that is successful finding a good dr. at temple. To bad your drs you have now aren't more experienced in lung/liver issues. IVIG is what I found when I researched your s. disorder. It is used for other issues like Lupus- autoimmune issues. Keep us posted how you are doing! Take care, loretta
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Unread 02-15-2013, 11:48 AM   #10
alaska49
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Well I spoke to my pulminary doctor who refered me to the dr at temple and told her what happened, so she asked for all the notes the doctor took and she too was very mad on her suggestions. The dr at temple her answer for my RSD was to get off all the pain meds and to go out dancing and jumping in a pool which I cant do either and she didnt have any answers for the sarcoid. So my dr was very upset and went and called her supervisor so she got in trouble, then the dr called my pulminary dr back and tried to fix everything but my dr wouldnt here of it. So my dr is setting up another appt. at another university hospital closer to home and she knows the dr so is hoping this will go alot better. My pain specialist couldnt believe the temple drs ideas for RSD. Thanks everyone for all your help and support and I will keep you up to date on whats happening.

Samantha
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