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    Old 03-04-2007, 08:17 PM   #31
    youngone00
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    Re: First apt with New PM Dr was Horrible! SurgicalDisaster Please read!

    I just wanted to thank every1 again. All of you are in my prayers too. I go to my PM (the original one) tomorrow, and I'm hoping maybe he helps me out at least a little. Surg thanks again for trying to help me, I cannot beleive how nice all of you are. I am going to make an appointment with Dr Rubinfield first thing in morning (I just finally found his phone number on Friday after they closed). I'm really praying for good things to happen tomorrow, so maybe I wont have to go to see anybody else. I'm just worried, because while my Dr isn't a bad guy, it seems like he gets kind of, well, I dont know what to call it, when I ask for a higher dosage or to be put on something else. Not really mad, or even suspicous, kind of just like he dont want to give it to you, and even when he does say yes and give it to you, like he is doin so against his will, if ya know what I mean. Its not like he gives a real bad attitude about it or anything, but to me it makes me feel very uncomfortable asking, almost as if I feel like one day he is going to blow his top. Other than the patch (putting me from 25 to 50, anytime he ever raised my doses it was 5mg-10mg at the time. I remember when I was on percocet 10 4x daily, and was still in a ton of pain. I asked him can I atleast have something more for night beacuse I couldn't sleep (he said 4x daily was percocet max). So he gave me atique, 200mcg (this was before I knew anything about anything, I didn't even know what oxycontin was). So I went to the pharmacy (with my ins, I have to pay out of pocket, and than I get re imbursed part of it), and it was $400 for only 30 of them. So I called up and asked for something else and he put me on 5mg oxy ir. As far as I know now, isn't the actiq alot stronger? Or maybe not in the 200mcg? But maybe he would've raised the dose easier because its not as known to be abused? The reason I'm asking is I recently found out that my insurance company (Horizon Blue Cross and Sheild POS), uses Caremark for prescription coverage. Besides from paying upfront and getting part reimburstment, you can send your prescriptions into Caremark (upto a 90 day supply on most meds), and they will send you the medication free (no co pay or anything, and you can even request the brand name, its still free). The thing with this is you cannot get a prescription for over a 30 day supply of narcotic medications, and it takes two weeks to get your stuff in the mail. I'm going to start doin this with all my other meds, but narcotic wise I'm thinking maybe if I ask for the actiq, I can start sending it in (I just have to make sure they cover actiq, as I hear some ins companies do not unless you have cancer).

    Thanks again
    Bryan

     
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    Old 03-05-2007, 01:02 AM   #32
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    Re: First apt with New PM Dr was Horrible! SurgicalDisaster Please read!

    Hey Murph I was re-reading over the posts here and noticed you stated in your first post you have been a pain patient for 16 years and your chronic pain (without meds) is a 10 out of 10, Is there some kind of typo here? how can you deal with 10 out of 10 pain with no meds?? Please, do tell! Have you received some form of new treatment or something? I really am curious.
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    Old 03-05-2007, 01:14 AM   #33
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    Re: First apt with New PM Dr was Horrible! SurgicalDisaster Please read!

    Quote:
    Originally Posted by mzpain View Post
    Well lets see, what do I now KNOW about Bryan after reading this thread?
    1. Whats the condition causing all the pain?
    As Bryan STATED he has CHRONIC PELVIC PAIN SYNDROME OR CHRONIC PELVIC MYONEURPATHY. Bryan's CHRONIC PELVIC PAIN was originally diagnosed as CHRONIC NON BACTERIA PROSTATITIS,now known as the CHRONIC PELVIC PAIN SYNDROME, it is believed to be caused by the muscles in the pelvic floor being tight and going into muscle spasms. I think Bryan was AS CLEAR AS ANYONE COULD BE about his condition especially since it is relatively difficult for even docs to pin point it. If anyone feels the need to know more I also learned from Bryan than surgicaldisaster has the disorder also and can add alot about it.
    2. What OTHER things, non narcotic has Bryan done for the pain?
    Doctors he has seen A. 3 Primary care doctors
    B. 4 Urologists
    C. 2 Gastro's
    D. 1 Pain Management and 1 PM wannabe
    E. 1 Physical therapist
    Physical therapist does trigger point therapy which does provide a little relief sometimes.
    Warm Baths 2-3 for 45-60 min. each helps with the muscle spasms.
    Lots of general relaxation techniques.
    3. His original PM doc is a great doc but ONLY feels comfortable prescribing ONLY Duralgesic patch and Percocet. The patch's side effects are too much to bear. Bryan would just like to have a doc that will try different combos to find a better fit med wise. BRYAN DIDNT ASK FOR MORE DRUGS! just ones that will work right.
    4. Bryan saw a different PM doc (a wannabe) but the doc was unethical rude and all assuming like alot of other hypocrites on this earth. The wanna be didnt listen to Bryans explanation of his health problems and started the appointment stating no meds in the first appointment, BRYAN DIDNT ASK FOR ANY! After a very short rude unprofessional (a doc who cant listen to the patient) appointment Bryan told him to forget it (like he should) he would stay with his current PM doc, at least bryan liked his current doc he just couldnt take the meds.
    Now if I can get this from bryan's posts why cant some other people??
    I think it all needs to stop Bryan already feels bad enough, and as for people on this board being sensitive ? I hope so it makes them understanding and supportive. Good night and be painless and sensitive
    I never got around to it, I just wanted to thank you for all your support, and also thanks for this post specifically! Also am wondering how everything is going with the compound hydro?

    Bryan

    Last edited by youngone00; 03-05-2007 at 01:19 AM.

     
    Old 03-05-2007, 10:00 AM   #34
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    Re: First apt with New PM Dr was Horrible! SurgicalDisaster Please read!

    Hey Bryan, no problem. I just felt you explained things pretty well and it needed to be pointed out and if anyone cant read your post and GET IT, I will point things out AGAIN. I just feel you dont need the stress, plus it stresses me out too.
    The compund meds? well unfortunately not as well as I had hoped. Even though my doc did something so special? unique? just for me, and it should have worked! I have to admit to him this week it didnt. One good thing though, I guess it's good sort of, is, it isnt my mistake on how the pills SHOULD have worked, it is my degenerative disc disease/osteoartheritis is advancing, so new worse pain. I was talking to shoreline about how I didnt have major lumbar pain until now, with no fall/accident, but the pain seemed to have progressed from the point when I had a myleogram back 9/06. So I am looking into that too, but man I hurt! I have gotten kinda tough over the last five years with my neck/arm problems, but this lowerback/leg pain is literally kicking my butt. I am up/down, try to walk it off etc... cant get away from the pain.
    I dont know what to do with the med situation but may just try and deal with it because the hydro IS THE ONLY med that doesnt either put me to bed or dopey ville. I mean it has always left my head clear so I can think, the others make me so stupid I cant stand myself or I sleep fo 18-20hrs a day. I have a pretty smart doc that LISTENS and I will see what he says. I am on alot of hydro/no tylenol, ibuprofen and thats it I think I need more NOT necessarily narcotic but some of the other meds we see people here taking in conjuction with their narcotics. I know I cant take cymbalta or lyrica but I am going to research the others to be informed when I see my doc.
    So ya going back to your original (nice) PM doc today, are ya just going to see what he will do? if anything different? I remember all you said about him, about how he was real nice and all but wouldnt consider anything other than the patch and that had unbearable side effects right? Well let us know if somehow he ventures out of his comfort zone. I remember ya didnt really want MORE or HARDER narcotics (dont think there is harder than the patch) but what you did want was for your doc to consider DIFFERENT or combos right? maybe he doesnt know alot about the other stuff and that is why he feels comfortable with the patch it is like your one stop pain med, I am sure it works great for alot of others but I understand when side effects are UNBEARABLE that means we CANT take the med and CANT function! I really hope he helps with SOMETHING different at least until ya can get to the new doc. I be pray'n for ya kid let us know.
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    Old 03-05-2007, 11:14 AM   #35
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    Re: First apt with New PM Dr was Horrible! SurgicalDisaster Please read!

    I had my appointment with the doc earlier this morning. It didn't go good at all. He asked how I was doin, and I told him I will still in alot of pain. Now I knew he already knew that, because my mother went to see him the other day and when he asked how she was, she told him that she was doing ok, and that it was really hard to watch me because I never get any sleep, etc etc etc.. Anyways, he pulled out the pad and was like lets order your meds here. He asked me if I wanted the duragesic. I told him that even at the 25mcg it helped out with the pain, but it wasn't worth the side effects. So he said ok we will dis continue that. Then when he was writing the prescription for my percocet i came out and asked him if there is anything in the world he can do to help me get releif, saying that I cannot handle it anymore and told him it wasn't like it was a tolerable amt of pain I was just trying to get rid of, and that it was really bad. So he replied "Well, your already on alot of meds, really to much medication, so I cant keep loading you up on it." So I remember when he gave me the oxy 20's for the first time and he took me from 120 perc's to 90, so I asked him if I can go back up. He said no, and that I wouldn't even notice the one pill with the dosages I'm on of this stuff. From there, I told him about this board, and told him I've been reading up on it alot. I really wanted to tell him that if he gave me oxy 40mg 3 x daily, I could probaly get away with out any break thru meds or anything. But instead I just said "I noticed that the Oxycontin seems to wear off early, usually in around 7-8 hrs, so when I was searching it on there and seen that alot of people agree, and there doc's have increased it to 3x daily. He than said that he didn't beleive that is what I needed, and that he doesn't think more medicine will work for me. I told him that it isn't that the medicine doesn't work, its just that I dont have enough coverage really. As the appointment was ending and he was getting ready to walk out, he said to me that he is afraid that its going to be really hard to get me off all of these meds when its time. When he said this I broke down in tears, and told him that I would love to be able to taper and get myself off of these meds, but that I just dont see it happening anytime soon, and that I used to worry about becoming dependant, but now a days I leaerned to accept the fact I'm probaly going to need this stuff in the future, and unless something great happens maybe for life. He than started walking out told me 4 week follow up, and than said to see how I do, and that next visit we can adjust my dosages a little, but he doesn't think the oxycontin 3 x daily is a good idea. So in the mean time I'm going to try the Dr Surg gave me the name of, and hope that works out. If not, I'm going to go back and see what he was thinking when said adjust the dosages. I'm hoping its more than just 10mg, and it something that is atleast a little more equal to the dosage of duragesic that I just discontinued. I shouldve said to him that we're not really loading me up because I discontinued the patch. I will next time.

    Thanks

    Bryan

     
    Old 03-05-2007, 11:27 AM   #36
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    Re: First apt with New PM Dr was Horrible! SurgicalDisaster Please read!

    MZ, I hope your doc has some answers for you, and can help you get out of your pain, I'm sorry to hear your condition is getting worse.

    When I was on percocet, I was taking 4 x daily, and I asked my doc for something else for nightime to help me get relief. He gave me actiq 200mcg, 1x daily. I went to the pharmacy and it would've costed me over 400 bucks to fill (my ins co than reimbursts me part of it), so i called up and he gave me oxyir 5mg x 1 daily instead. Back than I didn't know that I can send my scripts through mail order, and that there is no co pay. It just takes two weeks, and I can even get name brand. So I'm thinking maybe of asking for actiq again? Maybe that would help me, and it seems like for some reason even though how I understand it, its the strongest break thru med, it seems he is comfortbale prescribing it. What would 200mcg be equal to about when it comes to percocet? I'd appreciate it if anyone could help.

    Bryan

     
    Old 03-05-2007, 12:46 PM   #37
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    Re: First apt with New PM Dr was Horrible! SurgicalDisaster Please read!

    Oh, kid I am soooo sorry. What the ****?? NEXT TIME????? I cant believe this WHAT ABOUT NOW???? 4 weeks??? This is what angers me about these doctors WAIT!!! Wait for what??? wait for you to go crazy or something worse? I am sorry, you said he actually was a real nice doc just not comfortable with anything but the patch, BULL!! since the patch is gone what will replace it??? (Duragsic 25mcg, oxycontin 20mg 2xdaily, percocet 10 3 xdaily) this is what you said you are on in 1st post, if he takes away the patch you wont have the damn side effects GREAT, but the pain relief you did get from it NEEDS to be substituted!!! I thought your suggestion was VERY reasonable especially since you wanted to drop the BT med as well as the patch, I'm not sure but it may just convert over fairly even, but ask Shoreline I am an idiot with numbers and may be wrong. I just think since you werent adequately relieved with a 25mcg patch, 20mg oxycontin 2xday, 10mg perc 3xday for BT, even if the new way you suggested was a little higher that's whats NEEDED. You know these **** doctors CREATE more stress and pain than they relieve sometimes and others excuse it because of DEA and other bull crap well I wonder if somehow one of these scared docs ended up with the very EXACT pain they fail to treat properly in us, How would they like their pain delt with by their doc??? would they be happy when left in pain to wait 4weeks after already waiting in pain? would they be happy to be told NO, even with a reasonable request? I think it take s a pretty special doc who is NOT in pain that does the RIGHT thing by his pain patients, I hope you got that appointment with the new doc did ya? because if ya have to go back to your current I think I will cry FOR YOU! because I feel he could have PROPERLY adjusted the dosages IMMEDIATELY!! It is only logical the decrease will make you suffer even more than before and his lack of consideration is UNCONSCIONABLE to say the least. Enough of my rant, ya would think it was happening to me! HaHa! OK kid what about that appointment with new doc? when is it? let us know so I can reason with myself and calm down.Also you let us know how your doing day by day, I want to know right away if a miracle occures and you actually feel ok.
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    Old 03-05-2007, 03:10 PM   #38
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    Re: First apt with New PM Dr was Horrible! SurgicalDisaster Please read!

    Hi Bryan, I was reading up on your condition on the internet and read of some suggestions for certain medications that this other doctor had prescribe for other patients. A Dr. Shoskes states that he had some success with Neurontin and Elavil which Neurontin is for nerve pain and Elavil is like an anti-depressant. Which he also believes in the trigger point massage(which I know you have done) and pelvic floor relaxation exercises. As he describes that one of the effect of pelvic myoneuropathy is inflammation in the target tissues of the urongential region which he said could be treated with phytotherapy and Valium. Valium used on a short-term basics or "as needed" helps quell the muscle spasm, in combination with hot baths (which I know you have taken), the recommended dosage is 5 mg once every three days or as needed to avoid addiction. He also recommends seeing a physiotherapist who specializes in the treatment of pelvic pain which he saids some urologist can do it if not they should be able to recommend someone. Check the IC Network which has a database of qualified physiotherapists also check the International Pelvic Pain Society for practioners. I hope maybe some of the info will help.

     
    Old 03-05-2007, 04:10 PM   #39
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    Re: First apt with New PM Dr was Horrible! SurgicalDisaster Please read!

    Rayefaye, I appreciate your help alot. Yes, something I probaly should've mentioned, before all the narcotics, I tried first valium, and than Ativan (which helped a little bit more). I started using it every 3 days, than went every other, and than every day. It did help a little, but only to a certain point, and than as it seemed my condition was getting worse, they just stopped helping really at all. It seemed like I was up all night in pain, and tired from the night before. And than I'd take was on those two pills, and I'd end up more tired, but yet in soo much pain and discomfort, that I still couldn't go to sleep. What sucks most about this condition I think is that even when I first started on Percocet, and it took alot of the pain away (alot more than all the meds I'm on now do), I still had trouble sleeping because of the discomfort (having the feeling almost as if I have to urinate at all times, even though I know i dont). When I first started with this condition, I remember I'd have to urinate like 30 times a day. It wasn't until I started with the relaxation techniques, and the physical therapy, and stretching that it calmed down alot. The reaosn they reccomend the valium, or ativan or xanax for that matter, is that the symptoms of cpps are brought out largely by stress. They go hand in hand. They say when you stress you tense the pelvic floor which sends the muscles in a spasm. At that piont your in pain, and the pain causes you get stress more, which causes you to tense more, and you get the picture. They feel like the Valium should help break that cycle, and allow you to relax. There were times since I had this that I have had a few days, once or twice I even had a decent week, but lately its just been impossible. I cannot beleive that Dr keeps talking to me about when I will have to come off these meds how hard it will be, week in and week out, when I to be honest with you dont ever see it happening. I know I should stay positive, but its hard, and the Dr's only make it alot harder. I mean, if I was a Doc, I'd be telling my patient (hopefully you wont need a higher does, because the higher the dose sometimes the longer it may take to come off, and hopefully one day you will have the privelage to be able to wean off these things, but in the mean time nobody should have to live with any pain, never the less these amounts your in, so dont you hesitate to tell me the truth about your pain levels). I mean, how do these doc's sleep at night. I used to think most people become Dr's because in there hearts or in the back of there heads they want to help people. I now beleive there is some other reason, maybe the money or something. I dont know..

    Thanks again for your reading up on my condition. That was really nice of ya.

    Bryan

    Last edited by HBMod07; 03-06-2007 at 05:22 PM.

     
    Old 03-05-2007, 04:40 PM   #40
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    Re: First apt with New PM Dr was Horrible! SurgicalDisaster Please read!

    Well it does help you understand the condition better if you read up on it. Which I kept reading about the muscles spasms that occurs and I have severe muscle spasms in the left side of my neck. These muscle spasms are so bad that it causes my shoulder to draw all the way up to my ear, they diagnosed this as cervical dystonia. I take Soma 350 mg 4 x a day to keep them down but if we have severe weather it draws up real bad and hurts and the medicine doesn't help. So I was just wondering if you have such muscle spasms why are they not giving us something for the muscle spasms? 5 mg of Valium isn't nothing in my book but a waste of time just like Flexiril. I do hope you are able to find some relief soon and the info sure help understand your condition better. Sometimes it does help if someone understands what your condition is all about before making judgements which we all do at time or other.

     
    Old 03-05-2007, 08:03 PM   #41
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    Re: First apt with New PM Dr was Horrible! SurgicalDisaster Please read!

    Everything is not necessirly due to muscle spasms, its also just due to the muscles bein soo tight. For years Dr's used to think it was all prostate related, as most (but not all) with cpps tend to have inflamed prostates. Thats why most of us have so many urinating problems, which sometimes makes it painful to go, and also gives you the feeling of having to go when I dont even have too. Imagine when you have to urinate really really bad, imagine having that feeling all the time, even when you just got finished going. I remember for the first year i had this, I'd sit there and push and push just to get a tiny bit of urine out, because it gave me about 1 minute of releif. The fact that alot of Dr's still dont know about this, makes it even harder. So now Im going to the PM Doc, and instead of bringing MRI's with me, and having a battle about how much pain I'm in and how my pain med's aren't managing, I have to battle until they are willing to learn. I cannot tell you how many Dr's just shrugged me off when I tried to hand them the book. When my primary first started prescribing me percocets, he'd give me 60 at a time. It'd read on the label to take one every four to six hours as needed for pelvic pain. He was the only Dr who I can honestly say didn't just want to get me out of his office because he couldn't help me. He atleast tried to understand. He didn't read the book either, but to be honest, by the time I found the book I already knew what was wrong with me, and really didn't have to give him it, I just explained and he beleived. Anyways, I had a decent month, and still had a few percocets left from the month before. Usually I would end up seeing him around once a month, maybe a couple days before the month was over. When I called, he was on vacation. So they had me see a Dr I never seen before (there are like 6 Dr's who work at the place). I figured I wanted to get blood work done and needed the paper work and stuff, so I'd go and see this guy and atleast get that stuff done. He opened my file and said with a really bad attitude "what do you need." I told him I needed to get blood work, and needed the paper work. From there I told him I was on percocet, and he looked down, said Dr *** was prescribing you that?", and started shaking his head. So I told the guy "yes he was, why not? I'm in a ton of pain, I'd kill myself if I couldn't get any releif." I said that to make a point, not really saying i'd kill myself. He than looked at me with this face as if he was going to call the crazy house, so I took the comment back. I told him he should get the book by Dr Weiss, he told me he doesn't have time to even look into it never the less read the book. I told him and I quote "its a shame, beacause I bet you see alot of patients who have what you call prostatitis, and i bet you do the same thing you tried to me you do to them, and just keep giving them more and more cipro and other anti biotics, which are much more harmful than a percocet. I told him maybe he can actually help these people, who probaly think its in there head, and he shurgged me off and told me goodbye." I wanted to jump over his desk (he brought me into his office to give me the blood work forms) and beat him with the golf clubs that were there.

    BTW, the reason alot of Dr's load cpps patients up with antibiotics is before they found out (which was pretty recent) it is actually a muscle/nerve problem, they thought it was due to some auto immune infection in the prostate. You'd think they'd realize this wasn't it considering all the tests came out negative. Also, there are alot of peole who've I read about that had there prostates removed and still had the same problems.

    Thanks

    Bryan

     
    Old 03-05-2007, 08:39 PM   #42
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    Re: First apt with New PM Dr was Horrible! SurgicalDisaster Please read!

    Hey Bryan did you get that appointment with the new PM doc, Dr. Rubinfeld? Just curious. Take Care.
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    Last edited by mzpain; 03-05-2007 at 09:16 PM.

     
    Old 03-05-2007, 09:03 PM   #43
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    Re: First apt with New PM Dr was Horrible! SurgicalDisaster Please read!

    Hi Bryan~
    I jusr wanted to say that Im here for you, and dont have any time to post more than a shout out, sorry, Im in the middle of a lot or stuff, but I wanted to let you know that Ive been checking to see how you are~
    Hope you are ok, and wanted you to know that Im thinking and praying for ya buddy, ok?
    Hang in there, and I wanted you to know I was thinking of you!
    xoxoxoxoxoxoxoxo,
    xoxoxoxoxoxoxoxo,
    xxoxoxoxoxoxoox,
    Tons of hugs~
    IZZY'SMOM

     
    Old 03-06-2007, 11:38 AM   #44
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    Re: First apt with New PM Dr was Horrible! SurgicalDisaster Please read!

    I understand about the tight muscles because the muscles in the left and right side of my neck are so tight they're hard as bricks. I can't move my left side at all and my left arm muscles are just as tight. I know how bad it hurts when they tighten up on you. I also read about the nerve pain which I suffer from a chronic disease called Reflex Sympathetic Dystrophy with effects the nerves and causes severe nerve pain, I take Neurontion for the nerve pain. I still can't understand why they would give you Valium and Xanaxx for because that's used for basically bad nerves (like you're getting on my nerves kind). I think I will try to read up some more on this condition, here in NC we have some of the best medical schools like Duke, UNC at Chapel Hill, and Wake Forest University. So I had nothing else better to do. Maybe I can help find someone who knows more about it a maybe has some suggestions, it worth a try because I know how it is to hurt and no one seems to understand or know what's wrong with you.

     
    Old 03-06-2007, 09:16 PM   #45
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    Re: First apt with New PM Dr was Horrible! SurgicalDisaster Please read!

    Quote:
    Originally Posted by mzpain View Post
    Hey Bryan did you get that appointment with the new PM doc, Dr. Rubinfeld? Just curious. Take Care.
    Yep. Its for the beginning of April.. Thanks for asking . It makes me feel better knowing I have the support of you, and every1 else on this board. Before I started going thru this I used to think support groups were silly, but now I realize how much they can impact (or even save) a persons life..

    Thanks for caring, and I truly wish you the very best!!!

    Bryan

     
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