Frustrated

So… I’m new to all this. My profile description of me is wrong… I’m a 39 year old woman who has dealt with psoriasis her whole life. I am now having EXTREME hip and leg pain and had X-rays that showed arthritis in both hips lower spine and SI region. Wonderful dr at the time said yes it is psoriatic arthritis and we need to keep your pain in check. I am already on stelara and the pain is EXCRUCIATING when it’s time for a new injection(every 3 months). Wonderful dr has now retired on me and left me in the care of a dr who has a reputation of being a black and white dr. They gave a patient with a very grey disease to a black and white dr. Nice. Now what… He told me I’m lying to chase pills I’m faking I don’t know what I am talking about… Ouch. He did an MRI that came back within normal range, he took blood tests all that came back within normal ranges except my crp. He said that I don’t have psoriatic arthritis. I literally feel like I’m going crazy. I can’t walk anymore. I wake up crying in pain at night. I feel like a cripple. Where do I turn now? Any ideas are welcome

Oh...that's crazy! Maybe you should see another doctor. I had trouble with doc's at first. None of them really offered me any answers. I felt like I was going crazy too...felt like no one really cared or wanted to help me. It wasn't until last year I found this new doc who's been great so far.

It never hurts to see another doc and see what they say.

I am going to try that next. Unfortunately in the town that I am in you have to wait FOREVER to get a dr IF they accept you. I do have a few requests in now… Also he refused to give me a referral for a rhuemy but DID give me a referral to an ortho doc. Ugh.

Go to the ortho doc. Maybe he is sane and will understand you and refer you to a rheumatologist. Get another primary doc. That guy is a jerk. Report him to the state medical board and the AMA. No doctor should treat you that way, and if he is saying things like that to you, chances are he’s doing the same thing to his other patients. You are in pain resulting from a chronic, progressive disease that has been disgnosed by another physician and you have a right to be treated with dignity and respect. No visit to the doctor should end with you feeling humiliated. I would request a copy of your chart and tell them that you want it for the orthopod. Do not have them send it to a new primary care provider. This jerk may decide to call them and prepare them for your drug seeking tendencies.

If you cant find a good doc in your town, try the next town over. You may have to drive a little, but it’s worth it to find a provider who will treat you well.

I am so sorry that you had that experience. It makes me angry for you! If your pain is bad enough that you are in tears, go to the ER or urgent care. They can at least patch you up with some steroids, NSAIDS and an opiate to get you through until you are able to find another doc.

Well I have been lucky at least with doctors. I was always going to an Orthopedic doc until he could no longer help. He referred me to the Rheumatologist I see now and been with her for about 5 years. I have never had trouble with getting meds at least to a certain degree. If you have a family doc ask then if they can refer you to a pain clinic. They will evaluate your pain and usually try to help. I would definitely try to get another doc even if you have to travel a bit. I have been to doctors that don't seem to care no matter what is wrong.

Brett

Find a new doctor as soon as possible. My first doctors couldn’t figure out what was wrong with me. Suffered way too many years. Finally found an answer about 10 years ago with Dr Cole.

Is there any reason that you cannot change doctors?

Oh im so sorry for ur experience. That is frustrating, and unfair. He is rude and he's not being professional. If he doesnt think it is PsA then what is it? Did he say that? It has to be something. The dr cant just say it's not that, n not tell u what it could be or what it is.... What about the records from the old dr? Did u show him? What does he say about those records...those tests u did with the old dr. I dont believe this. Well I can believe it actually. Not all the drs r smart. I hope u can get it all sorted out and u can get the treatment that u need. I hope u feel better. I dont have any ideas except maybe try to find a new rheumy... get a 2nd opinion. That is really important because i dont think this dr knows what he is talking about and it is unfair to u.

http://www.rheumatology.org/directory/geo.asp Use the link to help you find a new rheumy. One familiar with PsA. You know you are NOT crazy. This has happened to me so many times & I still feel so dejected when this is done to me. I have a wonderful rheumy & I am so grateful. Do you have a PCP that can maybe recommend someone?? Maybe some here on this group who lives in your area can recommend someone. But do not stop till you find a doctor you are comfortable with.You need a doctor who will help you control this. There are good doctors out there you just need to be determined and patient. Best of luck to you & if I can be of any help please do not hesitate to ask.

First you need a rheumy to diagnosis and treat you and I would suggest a pain management doctor for the pain. I see both and both are very familiar with the disease and treat me with respect. I also have a great deal of pain and normal MRI readings but that doesn't mean that I don't have pain or that I don't have PsA. Just put this doctor out of your mind and find another, you do have a real disease and you need pain management at this time. Your welcome to contact me if you need anything! I've been there, I'm lucky to be with a good set of doctors. I get multiple injections in my SI joint to maintain pain an it works for me. Good luck!

Does your town have a walk-in clinic? I know it sounds like a step backwards, but docs at clinics can do specialist referals too. It may take some effort and time to find a sympathetic one that listens well though.

I’m curious - It doesn’t seem like you’re on any pills. Are you just relying on the injections?
Have you tried most of the common medications for this disease?

Finding the right combination of drugs for your body also takes time, but it strikes me as though you may not have such highs and lows if you were on a consistent dose of something.