Hi Byrd!! Nice to "see" you. It's been nuts. I was feeling so good and now those joints that started hurting in a certain order are starting all over again....will probably have to get another MRI to make sure there is no additional joint damage. fingers crossed!!! hope you are doing well.
Byrd Feeder said:
Hi Suzanne, just saw you post and am sorry to see that you are having pain. I hope you get some answers during your appointment and feel better soon!
Oh no, Suzanne, I'm so sorry to hear this. I don't know about you, but I hate MRIs. More hassle. But, if you do have to go through one, I hope at least something comes from it that will help. My best wishes!
Hi Suzanne,
I saw in an old discussion that you had found a rheumy at Northwestern that you really like. I live just outside of Chicago, work at Northwestern University, and am really looking for a new rheumy. Would you mind saying which rheumy you see? Thank you!
Andrea
Suzanne Hall said:
Hi Byrd!! Nice to "see" you. It's been nuts. I was feeling so good and now those joints that started hurting in a certain order are starting all over again....will probably have to get another MRI to make sure there is no additional joint damage. fingers crossed!!! hope you are doing well.
Byrd Feeder said:Hi Suzanne, just saw you post and am sorry to see that you are having pain. I hope you get some answers during your appointment and feel better soon!
Andrea. His name is Eric Ruderman. I sent you an email - hopefully it went through
Suzanne
I do not condone violence, but you should have punched that doctor. Unfortunately, I've found a lot of specialists have ZERO bedside manner. Finding a good one is hard, and when you do find a gem they're always incredibly popular... My mother had a pain management doc that seemed to be the only person in the state who really understood what she was going through-- but he was constantly being thrown in jail for "over prescribing" pain meds to people who were in so much pain that they couldn't function. (he wasn't just a pill-pusher, either; he kept a good balance between physical therapy, alternative treatments and medicinal treatments) He had a small and loyal following, and he got my mom through a VERY hard time in her life, for which I'm very grateful.
He was also a huge Star Trek fan, and he and my mom bonded over that :)
Good docs are out there, but they're so, so hard to find. Mom always looks up reviews of docs online before going to one, and checks their credentials and where they were trained.
I'm so sorry you had to go through that! My Rhemy was supposedly one of america's top 100 doctors, he did finally diagnose me with this disease, but he used me as a specimin for his papers or something. All I did was get tons of blood work and a new diagnosis every time I went. I was told PsA, and Chronic Fatigue, and Fibromylgia, and something rare called Sorgen's syndrome. I would be so upset whenever I left that I couldn't get out of bed. Plus the meds he gave me made me so sick that I didn't know if it was the meds or all the diseases I had been diagnosed with. I have since left him, am like you...looking for a good Rhuemy. Especially since my general practitioner smarted off to me when I asked for baseline Xrays...'well, if you have that there's nothing we can do anyway!'
I'm sorry you had to experience that, especially when you're pregnant! I hate when they hurry us out of the office without listening. What the point if they don't figure out what's going on.
PJ,
that dr(if you want to even give him enough credit to call him that) is a worthless worm. don't feel bad about crying, gheezz the guy was an azzO. You have enough to worry about already, you don't need to spend any amount of energy on this BoZo. I hope that you start to feel better and pain free so that you can concentrate on being a new mom.
Joel
Hi! I hope that you are pain free in real life and that things are going well for you! People are still relating to your discussion and adding to it! We welcome you back anytime, door is always open!
Wishing you the best!
SK
I agree with Cyber - look online before you go to the doctor to see how others felt about him/her. I had an almost identical experience to the writer of this piece and had I bothered to google his ratings, i would have found out he treated another patient the same way and a third disliked him as well. If you added in my negative comment, that was four out of nine - not such a hot record for a doctor.
Iām so so sorry ur doctor was rude to u. I am overweight too and I know what it fees like to be stuck because it hurts to do excessive excersise. people r so quick to judge. I hope you find some relief during your pregnancyā¦ wishing u a happy healthy babyā¦ and a new rheumatologist 
Sorry I have been away so long...life has been busy.
UPDATE:
After seeing the above mentioned "Doctor" I was referred to another specialist. (Almost two hours away from my house-but after my appointment I can tell it is worth the drive!) He seemed very understanding. Never once made me feel insignificant. He did a physical exam and ordered some bloodwork and took a health history. I have an appointment with him on wednesday to get those results and I am guessing he will order more diagnostics now that I am no longer pregnant.
I had my baby girl May 17th.
About a week after that it started flaring up full force! And it never completely went into remission during pregnancy :(
I am so happy with my decision to have a baby, and as bad as I want more kids my body can't take anymore. I can barely take care of her right now. I am so thankful for my husband. I was really wanting to breast feed but with all my health problems I never produced any milk. And besides with all the pain I need to get started my medicaiton again and it wouldn't be safe to breastfeed on it. Things definitely did not go as planned, but things are good nonetheless and I can't wait until wednesday when I can see my new doctor!
My pregnancy was healthy and she came out perfect. I only gained 10 pounds the whole pregnancy and I am under my pre pregnancy weight right now. I knew I could do it, I just wish I could have had some more support from that doctor... I did have an amazing OBGYN who supported me the whole way
We have got to be able to post pics??? (I haven't tried. But I believe that is this boards first Baby!!! Congrats and here's to a good appointment.
What a beautiful child! Oh PNfree, I am so happy for you, there is nothing sweeter than a baby! So glad you had such a good ob/gyn and found your Rheumy! Good things are happening! Hope you are truly on your way to being pain free! God bless!
How is it possible that my rheumatologist and others I have read about here, can have the hall to make such ignorant comments about there being no clinical signs of PsA when I have had horrible, unrelenting trochanteric bursitis for going on 8 years. Yet, she says it has nothing to do with PsA. She said the bone edema and inflammation my Ortho dx by MRI is not related to PsA. Do I need a new doctor? This is scary people! What are those of us with these kinds of experiences supposed to do? Keep doctor hopping or keep taking the abuse? I really liked my rheumatologist at first. She prescribed Enbrel which has worked great for me overall.
Yet she thinks my main problems are āsoft tissueāā¦well, doesnāt PsA affect that too?
Iām just about worn out with all of this and ready to try some CBD oil.
Man, Iām so sorry for all of us who have been so invalidated by careless remarks.
In other news, my kyphoplasty of my calcaneus was last Monday and it went very well. Iām praying it will end some of the pain in my foot that was related to a fracture that didnāt get addressed for God only knows how long.
Iām learning we must really advocate for ourselves and not be intimidated.
Self-advocacy is the name of the game, mimi. Bone edema and inflammation not part of PsA ā¦ yes, right. True that PsA affects soft tissue, and biologics sometimes arenāt that effective on soft tissue pain. I often say that if what a doctor says doesnāt make sense to you, itās time to find a new doctor. (Either they didnāt explain themselves adequately, or they are just plain wrong. Either way, itās not good.)
I was with Dr. Rheum-A for a year. She said I had mild disease that did not warrant a biologic. That made no sense to me: I already had some foot damage, and I felt like the proverbial bag of dirt. I accepted her word, though: she is qualified in rheumatology, Iām not. Then my hip suddenly āwentā: my family doc said it was OA. My gut said PsA. I was so fed up, so angry and feeling so terribly by that point, I went to a specialty PsA clinic. When Drs. Rheum B and C said āSevere disease, a lot of damageā I felt validated, and relieved to be given Enbrel. My disease (and my life) turned right around. That experience taught me to trust my gut.
Do you know if there are any PsA specialists in your area, or even a long drive away? Trust your gut, mimiB. Nobody knows your body like you do.
Iām not aware of any Rheumatologists who specialize in PsA. How would I find that out? Also, my health insurance limits me to a specific health care system. There are several rheumatologists to choose from. I suppose I could call all of their offices and inquire.
I need to write down my concerns and be ready for my next visit with her. Clearly, some misunderstandings need to be cleared up.
Yes, if your insurance limits who you can see, that does kind of tie you down, doesnāt it?
A written list of questions might be a good way to start, without immediately jumping ship. A bit of homework too. Maybe do some research on bone marrow oedema/edema (depending on which side of the Atlantic you live). I had bone marrow oedema in my feet, and it HURT. Terribly. I have no doubt that it was PsA related, and my feet have been badly damaged.
Hi mimiB. This sort of thing seems almost par for the course at the beginning of our ājourneyā. But when it happens quite a way down the line itās devastating.
I had something similar recently after moving to a new area. The rheumy nurse told me that PsA does not affect the spine, that the only enthesis it affects is the Achilles, that the pain I was experiencing was a mystery but might be caused by Mtx or Humira so I could ātry stopping themā. I told myself Iād handle it but in in retrospect I was seriously worried.
Well very fortunately Iāve now landed with one of the top PsA specialists in the UK. If by soft tissue you mean entheses, then I can tell you that she said enthesitis is the main symptom that many of her PsA patients experience.
I think there are grades of rheumys based partly on how up to date they are. My last rheumy was highly intelligent and on the ball but possibly not the best informed, Iām not sure really. But he did say that my trochanteric bursitis wasnāt necessarily related to PsA, however he always took my PsA very seriously which is the most important thing. What scares the be-jeezus out of me is when they start suggesting that someone with a PsA diagnosis actually has a case of osteoarthritis / fibromyalgia etc. etc. with delusions of PsA.
I agree most definitely with both you and Seenie that the only way to go is advocating for ourselves and not being intimidated plus the homework approach so that you are very sure of your ground.
