Do you have Questions about CES?
Have you or a loved one been diagnosed with CES?
Here's a place to find answers and support!
I was a member here many years ago - and some how lost touch.. But I find myself in a situation that I just don't know how to take on. I know from past experience, the folks here are very knowledgeable, and very supportive, so I've come to see if anyone can help me. (and hopefully, reconnect with old friends, and make some new ones)
A little basic history - I have DDD, Fibro, neurogenic bladder, CES, failed fusion in 2004 (L4-5, L5-S1) In 2014, I had an intrathecal pump implant put in, which, until May of this year, when another disc herniated, had been controlling my pain beautifully. I do not take ANY oral medications, and haven't since being weaned off just prior to having the pump put in.
Last Sept. I went to PM to have my pump refilled. The doc doing the procedure neglected to verify that the medication in the syringe was in fact my medication prior to putting it into my pump - resulting in my being given someone else's meds (he told me it was someone else's medication) Because I have anaphylactic allergies to all NSAIDS, I of course panicked, and asked what was in the syringe he put into my pump- he told me it was the same medication, same concentration- just not my name on the syringe. I was horrified. After much thought, I did call the facility admin and make them aware of what happened, and politely requested that this doctor not be assigned to doing my refills at any point in the future.
A couple of weeks ago, I went in to have my usual pump refill. When I walked into the flouro room, I was pretty surprised to see the doc from last Sept in there, waiting to do the procedure. Tough situation, since I can't really reschedule the procedure. The first thing he does is hold out the medication filled syringe, and demand that I verify its mine. I explained that without my reading glasses, I couldn't make out everything on the label. I did manage to see my name, but that was about it. He still did not verify anything with the other doc or the nurses in the room that it was actually MY meds. He refilled my pump, and asked for a urine sample. That kind of surprised me, since as I said, I dont take anything orally, and, it was the first time in over 4 yrs I'd ever been asked for a urine sample at this facility. I had to drink some water, but provided the sample as requested.
The rapid test came back negative for everything. The sample was then sent out to another facility (correct me if I'm wrong, but I thought that was done only if something was found on the rapid test??) Anyway, the second test detected presence of buprenorphine and its metabolite norbuprenorphine. It also said "Suspect use of buprenorphine within the last three days". Now, I do understand that docs are being put under the microscope like never before in the "war on opioids". And I also understand they see no shortage of folks who go in asking for pain meds with maybe not the best intentions - I do get it. I also understand that many of you don't know me from Adam - and all I have is my word that I have NEVER taken this medication, and that I have not taken ANY meds other than Tylenol. I have ZERO history of recreational drug use or abuse, ZERO history of prescription med misuse or abuse - I rarely drink.
When I saw the results in my patient portal, (this was last Thurs afternoon) I immediately called PM and asked them what it meant. I had to search online for what this medication was- as I had no idea. When I finally got a call back, I asked to be re tested, I was told only "Yeah, we could do that". Then, I was told "He wants to see you in the clinic to discuss the next appropriate step" and "There's no way you'd test positive for this unless you took it". Period.. End of discussion.. she refused to discuss the results any further with me, or answer any of my questions. My PCP just called back - since she's a new doc (to me) we've never met, she has no dx or history on me, she wont order a re test.
I have an appt tomorrow morning with PM - I'm nearly willing to bet I end up discharged over this. How can I prove I have NEVER taken this medication? I do plan to tell them to re test me (urine, hair, blood, whatever) to try and clear my name- but what else can I do? If anyone has any thoughts, suggestions, ideas - anything, please, let me know.. I dont want to think they can actually just discharge me and refuse to refill my pump .. its the only thing that gives me ANY quality of life.
Thank you for listening- and thank you in advance for any thoughts you may have
First off, I live in the UK....seems like you are in a tough spot I have no idea what these drugs are as I have only ever taken medication orally, what about analysis of the medication you received - how do you know there isn't trace elements of what they found, seems like you need a good pharmacist on your side or at least an analytical lab that is qualified to advise??? - this is such a rare element within receiving treatment, I myself take Oramorph and have often wondered how a roadside drug test would come out!!.....I wish I could help but unfortunately this is way way above my head and I haven't a clue as to who could help apart from what I have already suggested and I recognise that that is easier said than done.
Only thing I can say is be firm be positive and seek the help you need and don't be put off by anyone, there is always a higher authority, seek that out if necessary.
I wish you all the best...this is a difficult one.
first of all im so greatful that someone has created this group. Im in the UK also...its my first message so not sure if it will b read or not....if u read this let me know pls
I too would like to join the private support group but based on the stories on the website it and here that the group is inactive. Who is the current active administrator to contact and how do I contact them?
Hi all. The very first post in this forum is locked at the top and titled "How to join private CESSG group on Yahoo".