lostsoul15204
09-26-2003, 07:48 PM
I just posted on spinal cord disorder board about how my appt. with neurologist that my infectious disease doc sent me to and I could not believe how it went.I thought I was at an IME appt!He argued with every and I mean every thing I said, I was armed with last MRI that shows no fusion at L-3-4 and my discogram results where I contracted my infection from. He said to me " your back looks better than you do" and if you keep taking pain drugs you will end up in toilet" I have just reduced my methadonew dosage from 160mgs a day to 90mgs a day in 3 months without any BT meds, What do you think I look like, IT ha really been a rough time, I was MIA from my PC for 3 to 5 weeks, I'm not sure. my neurontin goes a little faster than it's supposed to but it has been a life saver to give me a few days a month out of bed, I don't know if all these docs are working together since I contracted osteomyelitis,they are still all related from referrals to cover the doc who did this to me's butt!!!Now I'm getting paranoid!!!!! He treated me like a drug seeker like so many of us have. I still have infection, he said no, I don't know really what to do as the next right thing, If he cosigns another docs bull sh&t I just might get cut off of meds and that is my worst fear right now, Pain is bad with lowering of dosage by PM doc, Jack beanstock I need your advice where are you , or how about MATT ,you still here? how about kimberella or twisten I need HELP!!!!!
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Rick
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Rick
Sponsor
twisten
09-26-2003, 10:11 PM
Hi Lostsoul. What are the chances of you finding a different neurologist? It doesn't sound like this guy is going to do much for you. So he says the infection is gone but you don't think it is? Unfortunately I'm going to be off-line for awhile as I'm moving. Take care and I'll catch up with you sometime next week.
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Hmm where should I begin?? Crohn's disease, sacroiilitis-crohn's related, scoliosis, spina bifida occulta, chronic myofascial pain, tmjd and migraines. Still waiting for bone scan and bone density test to tell me what else is wrong with me!! Too many surgeries to list!!
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Hmm where should I begin?? Crohn's disease, sacroiilitis-crohn's related, scoliosis, spina bifida occulta, chronic myofascial pain, tmjd and migraines. Still waiting for bone scan and bone density test to tell me what else is wrong with me!! Too many surgeries to list!!
grizzk62
09-27-2003, 03:23 AM
bump
Kimberbella
09-28-2003, 11:31 PM
Hey there Rick! :)
Sorry I didnt get back to you sooner, I was out of town...
First things first. I want to assure you that you know yourself and no one should ever make you feel or try to talk you into doing something that you do not feel comfortable doing. It certainly sounds like this neuro had an agenda of his own and he wanted to agrue with you all the way down town to make some sort of point :( And for you to have had to muster up extra energy, that you no doubt didnt have to expend in the first place, on a doctor that is supposed to help you gain enegry and offer hope, makes it all the worst! :mad:
That being said, I agree with Twisten and believe you have every right to seek out a second opinion... perhaps your PCP can refer you one or the pain management clinic can offer a suggestion.
Your going to have to forgive me, as Topmax does to my memory as what neurontin does to yours LOL, so I cant remember why you where MIA from your PCP doc for 5 weeks?
Im not sure how your paperwork is set up, but for me, it works best if I have all my documents from specialists forwarded to my PCP doc and my PM doctor whenever I see anyone else, so that they know all results also and whats happening as far as progress and whatnot... (even if there is none...). Might be something to think about so that the two main people are communicating at least, if you dont already that is? I mention this, as your concern about wondering if the doctors are working together on the osteomyelitis...
My advice is to continue to be open and honest with PM and tell them that you are having pains.. you have to be completely truthful with them as thats what they are there for...
Did the PM give you a reason as to why they are lowering the Meth dose? Is it because they want to measure the amount of relief the Neurontin is giving you in comparasion to the Meth? Or did a doctor order this?
Rick, my friend, as you know, my prayers are with you and I am always here for you. I hope I have helped some if only to be a ear to listen to.
Love and Prayers Always,
Kim :)
Sorry I didnt get back to you sooner, I was out of town...
First things first. I want to assure you that you know yourself and no one should ever make you feel or try to talk you into doing something that you do not feel comfortable doing. It certainly sounds like this neuro had an agenda of his own and he wanted to agrue with you all the way down town to make some sort of point :( And for you to have had to muster up extra energy, that you no doubt didnt have to expend in the first place, on a doctor that is supposed to help you gain enegry and offer hope, makes it all the worst! :mad:
That being said, I agree with Twisten and believe you have every right to seek out a second opinion... perhaps your PCP can refer you one or the pain management clinic can offer a suggestion.
Your going to have to forgive me, as Topmax does to my memory as what neurontin does to yours LOL, so I cant remember why you where MIA from your PCP doc for 5 weeks?
Im not sure how your paperwork is set up, but for me, it works best if I have all my documents from specialists forwarded to my PCP doc and my PM doctor whenever I see anyone else, so that they know all results also and whats happening as far as progress and whatnot... (even if there is none...). Might be something to think about so that the two main people are communicating at least, if you dont already that is? I mention this, as your concern about wondering if the doctors are working together on the osteomyelitis...
My advice is to continue to be open and honest with PM and tell them that you are having pains.. you have to be completely truthful with them as thats what they are there for...
Did the PM give you a reason as to why they are lowering the Meth dose? Is it because they want to measure the amount of relief the Neurontin is giving you in comparasion to the Meth? Or did a doctor order this?
Rick, my friend, as you know, my prayers are with you and I am always here for you. I hope I have helped some if only to be a ear to listen to.
Love and Prayers Always,
Kim :)
grizzk62
09-29-2003, 02:09 AM
Hey Lost soul,
I'm so sorry fro not getting back soner. It does sound to me also that the neurologist is up to something. Was he reffered by your PM doc to go see. If so than I would really be suspicous. If not then I would worry to much. I know that I saw a surgeon about 2 months into me being on longterm meds. And he said about verbatim what your neur guy told you. There are just some docs out there that are so opposed to us getting relief from meds. I just don't get it sometimes. I really think that those kind of docs live in the dark ages of medicine. You want to get a different opinion from a Doc you trust. If that is not an option then I would suggest that you write a letter to the doc that is perscribing your meds and in it state what your life was like before meds and what it is like now. And if you can get a letter from someone who helps you like a family member or friend to do the same and then on the next a[[t. tell your doc that you want this included in your file. Again I'm so sorry for taking so long. Do take care and keep me informed...
Matt
I'm so sorry fro not getting back soner. It does sound to me also that the neurologist is up to something. Was he reffered by your PM doc to go see. If so than I would really be suspicous. If not then I would worry to much. I know that I saw a surgeon about 2 months into me being on longterm meds. And he said about verbatim what your neur guy told you. There are just some docs out there that are so opposed to us getting relief from meds. I just don't get it sometimes. I really think that those kind of docs live in the dark ages of medicine. You want to get a different opinion from a Doc you trust. If that is not an option then I would suggest that you write a letter to the doc that is perscribing your meds and in it state what your life was like before meds and what it is like now. And if you can get a letter from someone who helps you like a family member or friend to do the same and then on the next a[[t. tell your doc that you want this included in your file. Again I'm so sorry for taking so long. Do take care and keep me informed...
Matt
whaleylaker
09-29-2003, 04:03 AM
I don't think you're paranoid. There seems to be collution somewhere along the line. At one piont I had a friend who's a lawyer call my old Dr. Granted I was totally out of options, but patients do have legal rights. Wish you only my best, Lake
lostsoul15204
10-01-2003, 07:35 PM
Thanks everyone for your responses and experience!!! I am definately going for a second opinion, I was refered to that a-hole by my infectious disease doc, I'm not sure why but I'm starting to think that there maybe a connection to the doc who infected me, the consperience theory, now I'm really parinoid but they were all connected to his refereal to this group of infectious disease docs. It has been a year and these three monkeys can't cure my infection, I think it's time to move on, thanks again to all my friends who replied, sincerely and God bless,
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Rick
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Rick