Being strung along by dr

You need to move on. It does not take that long to get results from tests. Please find a functional medicine clinic. They do a lot of labs and help you fix what is wrong with supplements and change of diet. You can get referrals to doctors that help you not strung you along. I'll say a prayer for you because I know what it is like to live with chronic pain. I never sit down long because of the pain it causes. Cannibus helps a lot with the nerve pain.

Unfortunately, Celia, not every doctor uses an on-line portal. Many individual practitioner where I winter actually still keep paper records! And those who do use portals seem to each have a different one, so health records do not get integrated.

They do and it's a very large amazing practice. The Dr just doesn't care about me, cause maybe he could help, maybe it won't help.im afraid I'm actually just not that important to him, and going above him, would probably just upset him, and not help me. I want him to care about me and my pain, but can't make him.

Thank you ! I'm dealing with a large pretty famous place. The real problem is it's so specialized, there are very few that deal with this. I though I was finally in the right place. The Dr is so good and picky on his patients not knowing if he could help me, or not, seems like I'm just no where on his priority list. He said I could get another opinion, but didn't have any suggestions on where that would be. He is the only one at this large practice that does this. Just no where to go. This has been going on for many years, finally got a diagnosis last year, but now seems like I just can't get help anywhere. After much research, Pt since 2016, pain meds etc, honestly just don't know where to go, what to do. The last thing I wan to do is piss off a dr who might?? finally help. So just keep hanging on. I just wished I could get help with a very specialized Dr who actually cares.

Thank you ! I'm dealing with a large pretty famous place. The real problem is it's so specialized, there are very few that deal with this. I though I was finally in the right place. The Dr is so good and picky on his patients not knowing if he could help me, or not, seems like I'm just no where on his priority list. He said I could get another opinion, but didn't have any suggestions on where that would be. He is the only one at this large practice that does this. Just no where to go. This has been going on for many years, finally got a diagnosis last year, but now seems like I just can't get help anywhere. After much research, Pt since 2016, pain meds etc, honestly just don't know where to go, what to do. The last thing I wan to do is piss off a dr who might?? finally help. So just keep hanging on. I just wished I could get help with a very specialized Dr who actually cares.

Ohh, I get it now =(. I’m so sorry; that is really frustrating. I am shaking my head at the unfair imbalance of power between providers (especially what I sometimes refer to as “super-specialists”) and us mere mortals in pain. I’m in a similar situation, only it’s not as urgent because I do have some other strategies, just not this specific person’s expertise for a one if my significant conditions…which is also very specialized. Sigh.

That was actually one of the situations I had in mind when I mentioned I escalated my concern. Literally no one in the office was responding to me—complete silence on the portal and no response to phone messages for six weeks (I was told if hear back from someone the following week and they knew I was an out of state patient), from anyone, not even the nurse coordinator they work with. I ended up submitting a grievance to the patient experience office, and that is what finally prompted someone to respond to me. I understand not wanting to piss off the provider…but if you’ve truly been waiting months with only someone saying to “be patient,” I think it qualifies as having been patient enough? Maybe you could start somewhere in between like asking to communicate with whomever else on their team (nurse, NP, PA), or if not them asking to speak with the practice manager or anyone who would be appropriate. If you can frame it as, “I know he’s very busy, and I understand. I’m just looking for more information on when specifically we can discuss this, because right now I have no information, and I’ve been waiting x amount of months without any information…” You’re shining a light on the frustration of the uncertainty instead of directly pointing the finger of blame >_< .

A large institution should have such an office, and honestly they’d forward your concern to the practice manager anyway. The “complaint” doesn’t usually go directly to the provider anyway—it of course goes to a person in another position to attempt to mediate or discuss it with you.

For what items worth, I’m not sure about your condition, but if you didn’t cover with your PT a pain neuroscience approach such as with graded motor imagery or other strategies, it may be worth looking into because I’ve found central sensitization with chronic pain, even when it starts with a physical injury or condition usually gets overlooked by PTs and physicians, and it’s something that can make a difference immediately while also pursuing treatment for the biomedical issues that set off the pain and even make that treatment more effective. I mentioned one of my PTs brought an app called Curable to my attention, and I’m considering trying it for a more structured approach outside of PT as long as I can figure out how to apply it to myself. It was developed by experts who actually have chronic pain. I had PT for years and finally graded motor imagery (a lot of the research is on back and neck pain) is what finally helped me make more progress in 3 months than I did in 3 years.

I’m wishing you fortitude and hope you get some answers soon.

@tjjordan1
It is not clear what you were actually diagnosed with and why you would be strung along. Are you working with the right type of doctor? What results of tests do you have and that you looked at? No one should stay with a doctor who doesn’t seem to care to help get diagnosis/treatment for their patients. Why are you trying so hard to try to make the doctor care and waiting for them to care while you suffer?

I have congenital spinal stenosis, degenerative disc disease, osteoarthritis, small fiber neuropathy, etc. It took me 8 long years to get diagnosed/treated but I had to be a very active and engaged patient. I had to fire many doctors and find new doctors. I finally was diagnosed and had decompression surgery on neck/lower back and spinal injections for pain. Many of my symptoms improved.

You may benefit by stepping back and assessing what you may want to do differently in advocating for yourself and getting better healthcare. Good luck moving past/beyond the stuck position of status quo.