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Old 09-21-2007, 06:51 AM   #1
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for Jon and about new Doc's and RSD

Hey, Jon, are you ok? Haven't seen you on here in a few days and was wondering about you. I have had a rough few days myself. A bad flare up. I think it is the weather change. Maybe thats whats causing yours, if thats whats wrong. My leg has been burning in my thigh the last few days. Have you had sympathetic blocks? Do they sometimes work and sometimes not? Mine do that. If I wait too long between them, then they don't do as well as the ones I get close to the 3 month mark. If I wait due to scheduling or something, and it gets to be like 4 months, then they don't do as well. It's funny because sometimes I will be totally awake and sometimes I'm out like a light with the sedation they give during the block. I'm really getting nervous about the change in Dr's. It's getting closer to Monday and my appointment with her. I don't know why I'm nervous, I guess I am because I don't want her to think I'm Dr. shopping, which in a way I am, but not for the reason's they look for in aquiring meds. It's such a fine line isn't it? Because I am looking for a Doc to give me meds and treat me correctly but not because of the bad way. It's like when I went for my disability hearing, the judge put in the report that I doctor shopped, when all I was doing was looking for a diagnosis and pain relief at that time before I knew what was wrong. I was referred to different Dr's, not just going around town looking for them. This disease is funny like that because there really isn't concrete proof like xrays or mri's to prove it. I'm taking the medical records that I had when I was doing the social security thing, up to March of 06. I'm taking them with me on Monday. I also have the reports from the initial injury on up to March of 06. So i think that will help her better understand and prove I'm not in there for the wrong reasons.
Well I won't write a novel today, just wanted to see how you were doing. Hope you feel better soon.

Kim

Last edited by mimba46; 09-26-2007 at 12:13 PM. Reason: content

 
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Old 09-23-2007, 07:14 AM   #2
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Re: for Jon and about new Doc's and RSD

Hey kim,

Sorry.. This flu has been kicking my tail. I finally broke fever yesterday. To let you know, I still walk around but it looks pretty pathetic. I havent made use of any assisted devices yet like a cane or wheel chair and I dont have plans on doing it. It seems to have migrated into my hip and ankle but so far its just mainly pain... Some days my ankle will blow up but only if I have been on it for countless hours on end.

My hopes are to have the pump installed. Monday is a big day for me as I should find out wether i get to have it or have to fight W/C for it. I looked up that new painkiller called "prialt" and want it installed. I have spoke with numerous people about this drug and it seems like a way to try. If all goes well I get the trial on the 26th of this month. We will see im nervous because actually friday i was supposed to have found out... Anyways, im going to lay back down I slept horribly last night. Let me know how the appointment goes!!!

Jon

 
Old 09-23-2007, 10:53 AM   #3
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Smile Re: for Jon and about new Doc's and RSD

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Originally Posted by jodom1979 View Post
Hey kim,

Sorry.. This flu has been kicking my tail. I finally broke fever yesterday. To let you know, I still walk around but it looks pretty pathetic. I havent made use of any assisted devices yet like a cane or wheel chair and I dont have plans on doing it. It seems to have migrated into my hip and ankle but so far its just mainly pain... Some days my ankle will blow up but only if I have been on it for countless hours on end.

My hopes are to have the pump installed. Monday is a big day for me as I should find out wether i get to have it or have to fight W/C for it. I looked up that new painkiller called "prialt" and want it installed. I have spoke with numerous people about this drug and it seems like a way to try. If all goes well I get the trial on the 26th of this month. We will see im nervous because actually friday i was supposed to have found out... Anyways, im going to lay back down I slept horribly last night. Let me know how the appointment goes!!!

Jon
Hey Jon, I was beginning to worry I just got over a bad cold, so I can relate.
I've been down myself. Friday, my hip started hurting really bad and after that, well, it's all down hill. I'm back in the chair. I had thought it had spread to my hip, but now I'm certain. I really hope she can help tomorrow. In a way it's good because she will see how I am when I'm down. The thing is I just had a block on August 15th!!! I knew it hadn't worked as well as others, but just over a month??? I've told my PM that it had spread, but like evrything else, he seems not to give a darn. My thigh began that awful stinging and burning all night Friday. And I don't have enough medicine?? He has lost his mind if he thinks I can do without my medicine, he really has. Then my ankle(where the initial injury was) started up and I could no longer walk on it. I had muscle cramps and my toes began curling!! My whole left side went down in 3 days!! I've been in bed for 3 days now, only getting up to the bathroom and checking email once a day and looking to see if you are ok! I was glad to see you posted today. I've missed talking to you!
I am thinking about you and sending good thoughts out into the universe for you on that pump. I hope you get it and it works wonders for you, heck, maybe I can be number 2!!!
I will post tomorrow when I get back from the Doc!
Hope you feel better soon!

Kim

Last edited by mimba46; 09-26-2007 at 12:11 PM.

 
Old 09-23-2007, 01:10 PM   #4
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Re: for Jon and about new Doc's and RSD

Jon,

I'm sorry you end up with the flu. As if you needed something else to make you feel bad. I'm going to the Georgetown University Hospital in Washington D.C. this thur. THey are going to set me up for a block for my right foot,(it spread to the right side a couple of months ago), and see if I can get a spinal stim. I'm hoping something good comes of it. I'm coming to Lexington in sept of 2010 for the FEI show that is going to be at the horse park. I've got to be up and running for it. I don't want to have to go in a wheelchair, or with a walker/cane. Let me know how you apt goes this week.

hugs
Mary

 
Old 09-24-2007, 04:07 AM   #5
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Re: for Jon and about new Doc's and RSD

Hey kim,

I hope everything works out for you today! Give me a report on how things went. I hope she boots you to my PM I think you would love her. Sorry once again for the short reply I have alot of emailing to do today.. im REALLY behind. talk to you soon!

Jon

 
Old 09-24-2007, 04:33 AM   #6
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Re: for Jon and about new Doc's and RSD

Hey mary,

I can promise you I will be there in 2010 for the FEI!! I pretty much go to all the equine events around here. If sales are going on, you can find me lurking around there too. Keeneland is my home away from home. LOL

Having RSD spread is my worst fear. So far it hasnt moved much.. So im counting my blessings. Im going to give foaling another go this winter as it is all I pretty much have left to get my kick's in life with. I have a couple people wanting me to work for them.. We'll see how it works out. Im just hoping my body will hold up to the punishment. The latest and greatest cocktail of meds I think will allow me to do it.

Im kinda nervous this morning to call my nurse case manager to see how my review went on me getting the trial of prialt... we will see soon enough. I REALLY hope this IME doc agrees at letting me have a crack at it. Anyways, keep me posted on your happenings!

Jon

 
Old 09-24-2007, 12:33 PM   #7
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Re: for Jon and about new Doc's and RSD

Quote:
Originally Posted by jodom1979 View Post
Hey kim,

I hope everything works out for you today! Give me a report on how things went. I hope she boots you to my PM I think you would love her. Sorry once again for the short reply I have alot of emailing to do today.. im REALLY behind. talk to you soon!

Jon
Hey Jon, all went well, they aren't sending me to Dubal though, they are sending me to Ackerman as he does meds. I saw the PA and she was really nice, I liked her. I will be going back in 4 weeks. They are doing blood work to just see how everything is going. I haven't done that in quite a while. She also wants me to do a MRI of my back and head I think to rule out MS!!! She couldn't believe that no one did that yet. She also said something very strange. That RSD doesn't spread to other limbs?? WHAT??? That makes her think that something else may be going on. But I was under the impression that it did. Its rare, but does happen. She asked The Dr also and that whats she said as well. That the symptoms in my arms aren't the same. She also said Fibromyalgia could be going on. I'm EXHAUSTED!! Thats all I need to have is something else as well as RSD. What do you think? Am I crazy, or does it spread? I told her about my hip hurting real bad Friday and then a flare up followed. And she said it usually stays put, not going from one side to the other. When I go back in 4 weeks they are doing the fibro test and results from blood work, like cholesterol, etc... In the meantime they are referring me to Ackerman, so we'll see what he says. She does think I have RSD,but only in my left leg, the rest is up in the air I think. I'm really confused. But I did like them there and will keep them as my primary, so thanks for that. Did you find out anything about your trial on the new medicine yet? Oh yeah, she mentioned Causalgia, but isn't that just the old name for RSD? Like I said I'm exhausted and confused. Hope all went well, and let me know what you think about this, I'm curious as to what you do think about it.

KIm

Last edited by mimba46; 09-26-2007 at 01:13 PM. Reason: content

 
Old 09-24-2007, 01:48 PM   #8
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Re: for Jon and about new Doc's and RSD

OMG... This really turned out horrible. Im soo sorry they didnt send you to Dubal.... I honestly did not mean to steer you wrong. Look, I had a Horrible experiance with Ackerman. He was a real jerk with me.. Horror story on its own. Although I know he has mainly a female patient base and they seem to love him.

I feel absolutely horrible. Im so so sorry kim. If you want a heads up on him I would be happy to tell you my story. Im never doing this again... Im at a loss for words right now..

 
Old 09-24-2007, 04:01 PM   #9
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Exclamation Re: for Jon and about new Doc's and RSD

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Originally Posted by jodom1979 View Post
OMG... This really turned out horrible. Im soo sorry they didnt send you to Dubal.... I honestly did not mean to steer you wrong. Look, I had a Horrible experiance with Ackerman. He was a real jerk with me.. Horror story on its own. Although I know he has mainly a female patient base and they seem to love him.

I feel absolutely horrible. Im so so sorry kim. If you want a heads up on him I would be happy to tell you my story. Im never doing this again... Im at a loss for words right now..
It's not your fault, your heart was in the right place. But I must admit, you have me a little terrified now I think I want to know your story Yes I do, really. What did he do? Was he the first pm you saw? I too was hoping for Dubal, except that the last few days made me realize doing without the medicine is impossible at this point. How bad was it??? What on earth could he have done, please reply PLEASE!!! I'm waiting on egg shells. All I can do is give it a try, but I do want a heads up FOR SURE!!! Anxiously awaiting (this is me with the RSD burning in my leg awaiting your answer )

Don't worry about it, and don't feel bad, you didn't know, hey, Its not all a wash, I liked her PA!!!

Kim

Last edited by mimba46; 09-26-2007 at 12:10 PM. Reason: content

 
Old 09-25-2007, 02:38 AM   #10
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Re: for Jon and about new Doc's and RSD

Hey kim,

He was my first PM I saw. I was there a total of 5 hrs waiting on him. He came in the room, used a temp gun on my leg... Asked briefly my symptoms and then handed me some cream that would "Take ALLLLLLL your pain away." He gave me a drug test right on the spot. Ordered a triphase bone scan. Then he left the room with out even saying good bye. He was rude and completely unsympathetic to my pain. I had an appointment 1 month later after the results which showed no rsd from what he read. I called mid month saying I need something to get me through until we saw each other again as the cream didnt do squat for my pain. My visit with him as less than 10 minutes long. Well we didnt make it too to the next appointment as I fired him.

while I was waiting on him there was nothing but females waiting on him and they all seemed to be very happy with him when he spoke to them. The walls in his office are very thin. Give him a whirl if you like. Did my primary set you an appointment up with him? For a co-pay it might not hurt to see him and see what he has to say.

Im afraid to give you anymore advice about all of this as all of this blew up in my face more ways than you know.

wellI guess it wouldnt hurt to see what doctor ackerman has to sayto you... you never know what could happen. Maybe he might be the greatest PM you ever met.. who knows..

Jon

Last edited by jodom1979; 09-25-2007 at 03:02 AM. Reason: content

 
Old 09-25-2007, 06:59 AM   #11
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Thumbs up Re: for Jon and about new Doc's and RSD

Quote:
Originally Posted by jodom1979 View Post
Hey kim,

He was my first PM I saw. I was there a total of 5 hrs waiting on him. He came in the room, used a temp gun on my leg... Asked briefly my symptoms and then handed me some cream that would "Take ALLLLLLL your pain away." He gave me a drug test right on the spot. Ordered a triphase bone scan. Then he left the room with out even saying good bye. He was rude and completely unsympathetic to my pain. I had an appointment 1 month later after the results which showed no rsd from what he read. I called mid month saying I need something to get me through until we saw each other again as the cream didnt do squat for my pain. My visit with him as less than 10 minutes long. Well we didnt make it too to the next appointment as I fired him.

while I was waiting on him there was nothing but females waiting on him and they all seemed to be very happy with him when he spoke to them. The walls in his office are very thin. Give him a whirl if you like. Did my primary set you an appointment up with him? For a co-pay it might not hurt to see him and see what he has to say.

Im afraid to give you anymore advice about all of this as all of this blew up in my face more ways than you know.

wellI guess it wouldnt hurt to see what doctor ackerman has to sayto you... you never know what could happen. Maybe he might be the greatest PM you ever met.. who knows..

Jon
Hey Jon, thanks for getting back to me. I really don't want you to feel bad. Please don't, as you were just trying to help. Gosh he sounds a little like my pm I have now. Mine wasn't rude at first, but is now. I think the reason they referred me to him was I told her about my flare up these past few days and I said I don't see how I can cut down on the meds as my pain is too great, which is the total truth. When she was examining me yesterday I began crying in pain when she was touching my left leg and having me try to raise it up and so on and so forth. I'm keeping my appointment with my pm next month and I have enough meds to barely get me by until then as I had some left over from previous visits because I WAS cutting down and when he was forgetting about cutting me down and keeping my appointments the same in between. Thank goodness huh? But please don't feel bad as everyones case is different and like you said, he might be the answer to my prayers and if not then I still have my pm to fall back on. All I'm out is a co-pay.
I'm rethinking the MRI though on my head, I seriously doubt its MS as MS doesn't cause pain. I think I will tell her I will wait until after I see Ackerman to see what he says first as they are so expensive and I live on a disability check and almost half of that goes for my Anthem Insurance for medical care and I don't have Medicare yet, I will about May next year. Also to wait until the test me for Fibro as that makes more sense. Maybe that is whats going on with the other limbs. My Sister has it and what she describes is more likely the case. Lucky me to have two pain syndromes going on at once huh?
I would like to know what you think about the idea that it doesn't spread to other limbs? Please don't be scared to answer, it just seems like you have read more about this than I have. Everything I read says it is possible but rare. My Pm treated the right side as a precaution just in case, but I was reading my records and he says in them that it more than likely spread to my left arm and back but he is treating the right just in case so that tells me that it IS possible. I think I will start a new thread to see what everyone else says too.
I hope this doesn't make you scared to talk with me, I've really enjoyed reading your replys and suggestions. It helps SOOO much to have someone who understands. I know you were trying to help and I really appreciate everything, REALLY!! We will see how it goes, who knows like you said I might love him and it all won't be for nothing. Take care and please don't let this stop you from replying ok? You have helped in more ways than you think if only for the talks. And like I said I do like their office. I haven't met her yet, but they seemed real nice. And I'm sure you have helped others on this board with your knowledge and experiences.
They are calling me today with the appointment for Ackerman as the lady who does that was not there yesterday.

Kim

Last edited by mimba46; 09-26-2007 at 12:05 PM. Reason: content

 
Old 09-26-2007, 06:08 AM   #12
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Re: for Jon and about new Doc's and RSD

Hey kim,

Again, im sorry everything worked out the way it did. I was to the understanding you wanted a safe way off of morphine... Go interview ackerman and see what he says.

From here on out Im going silent on here for a while. This all really blew up in my face. Anyways, Take care and I wish you the best. No hard feelings.

Jon

Last edited by jodom1979; 09-26-2007 at 06:53 AM. Reason: content

 
Old 09-26-2007, 08:02 AM   #13
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Unhappy Re: for Jon and about new Doc's and RSD

Quote:
Originally Posted by jodom1979 View Post
Hey kim,

Again, im sorry everything worked out the way it did. I was to the understanding you wanted a safe way off of morphine... Go interview ackerman and see what he says.

From here on out Im going silent on here for a while. This all really blew up in my face. Anyways, Take care and I wish you the best. No hard feelings.

Jon
Hi Jon, Now I feel bad for causing you to go silent. I apologize. Yes, I did want a safe way to go off morphine, but the flare-up made me rethink that. I did tell her that if that is what they think I should do(go off of it), then I did want a slow taper off with professional help and I felt like my current pm was not doing that correctly. So I will see ackerman and see what he has to say.
Please don't let me interfere with your post on here,ok? I did want to see someone else for this as it was time to get "fresh eyes" onthe matter anyway. I simply had a bad flare-up and the pain was horrible. It's let up a little now, but when I went there it was just hard to say, I don't need the one thing that keeps the pain from making me pull my hair out! She saw that it was bad when she was examiming me. This was NOT you fault.
If you are feeling that you shouldn't have referred me to your Doc for another reason, I'm sorry for that too. It sort of blew up in my face as well. I WANT to be off something that I have to rely on so much. I feel trapped. This is not easy for me either. To have them think that something else is going on, is making me nuts. It took a year to finally know why I was in pain and even though it was something bad, it was a relief to finally know and get treatment. I had very intention of trying to get off of it, but like I said, the flareup was HORRIBLE. I know you can relate to that, can't you? Thats all that happened, you didn't do anything wrong, you were trying to help and it's greatly appreciated. I told her what my Doc was doing and I wanted another opinion on it, so I guess her opinion was I still needed it. If she agreed with him, then I'm sure they would offer a safe way to do it, right?
The one thing that threw me off was she said it doesn't spread and thought it was something else. I got so un-nerved by that(no pun intended ha ha) I couldn't think straight.
Anyway, we will see how it goes and again, I'm sorry if I stepped on your toes with this. I got from your post that you are regretting turning me on to your Doc for reasons other than they didn't send me to Dubal. If thats the case, I'm really sorry If you don't want to answer any more of my post, then I'm really REALLY REALLY sorry. She told me that Dubal didn't do meds like that and with the pain I had that day, it was not easy to say I didn't need it anymore, thats all.
Again, I'm SO SO sorry. I do feel bad about the way it went down.

I hope to talk to you soon

Kim

Last edited by mimba46; 09-26-2007 at 12:08 PM. Reason: content

 
Old 09-26-2007, 09:05 AM   #14
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Re: for Jon and about new Doc's and RSD

Hey Kim,

I hope you plan on using them for your general medical needs. Im afraid if I tell you what happened you might call them and I dont want or need another phonecall from them. Please keep there names and information off the internet out of respect for me and her. Could you please do this for me?

Im editing all my messages where her practice has been mentioned.


Thanks
Jon

 
Old 09-26-2007, 11:01 AM   #15
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Re: for Jon and about new Doc's and RSD

Quote:
Originally Posted by jodom1979 View Post
Hey Kim,

I hope you plan on using them for your general medical needs. Im afraid if I tell you what happened you might call them and I dont want or need another phonecall from them. Please keep there names and information off the internet out of respect for me and her. Could you please do this for me?

Im editing all my messages where her practice has been mentioned.


Thanks
Jon
What in the world? Don't worry I won't post anything like that anymore, Gosh, what happened? Did you get in trouble for posting their name? Or referring me? I won't call them about it, I assure you. I will NOT bring you up at all, the next time I go. My God, what in the world happened? I hope she didn't get the wrong impression of me, I was extremely nervous and when I get nervous, I seem to ramble and come off wrong sometimes. But this has been so stressful for me and I'm desperate for help. I'm sorry for saying you told me about them, but she asked what brought me to them or whom, so I told her. I think I came off wrong to her. I feel it. Gosh, what have I done? I'm so very sorry, I didn't mean to get you in trouble, I just told her that you recommended them and had nothing but good things to say and I was looking for a new primary because I wasn't happy with the one I have.
My imagination is running wild and I'm getting a little paranoid that I came off like a lunatic or something. I think I made a bad first impression. I was trying to say everything I could in the time allowed. It probably seemed like I'm a crazy person. All I was trying to do was get another opinion about whether going off the medicine was correct in my situation, what with the horrible pain I still have. Thats all. And if so take me off the right way. I'm thinking she thought I was just looking for medicine, and that IS NOT what I was doing, I just want a dr. I can trust to have my best interest at heart.
I'm very sorry. If you don't want to tell me, thats ok, but I assure you the matter is dropped and I will not say anything else about it.
The next time I go, I'll try not to be so nervous and maybe she will get to know me and see that I'm not like that when I'm not so nervous. I was getting very frustrated because I was looking for my nerve conduction test I had several years ago when this happened, and I couldn't find it and it felt like she wasn't believing my RSD and I was desperate to find that to show her.
Like I said, I'm very sorry, I did NOT intend for this to go this way.
I promise not to call them about this, but please let me know so I don't look like an idiot and I feel I'm already one.
I will respect what you asked if you don't want to say. Don't worry. Just tell me if it was because I came off wrong or whether it was the information on here. I'm so afraid it's because I came wrong.
I'm editing mine as well, for respect for you and them, again I camn't say it enough, I'm very sorry

I'm sorry
Kim

Last edited by mimba46; 09-26-2007 at 12:07 PM. Reason: forgot something

 
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