I am very, very sorry that you had this bad experience. Your level of frustration must be at an all-time high right now. I will pray for you. In the meantime, if no doctor will help you, then do your best to help yourself. Do research and look for natural remedies that you know won't harm you--such as a gluten-free or a vegan diet. Take care of yourself, and be sure to vent to us.

I don't know if anyone else has mentioned this but try the MDA to see if they can help point you to a good Rheumy and or Derm in your area. Try the Myositis Association also, maybe someone from a local chapter or support group can recommend someone.
I am so lucky to have a wonderful Rheumy. Anyone on Long Island who ever needs one please msg. me and I'll definitely recommend her. Take Nanny's advice also, I believe we need to help ourselves as much as we can. Good luck, and well wishes.

Not all doctors want to treat Myositis. I struggled to find a doctor at first too. I have PM so maybe my opinion doesn't matter but I don't think you need a Derm, Rheumy, and Neuro. You need someone who knows this disease and how to fight it...or willing to learn how to fight it. That will probably be a Rheumy or Neuro.

So I have a rule that I will not work with a doctor that is an ass without bedside manner. Cross him off the list and move to the next. I don't know where you are located but there have got to be more options on a physician.

This is the most disgraceful behaviour from a doctor I have read here. Cross him off your list but complain to the authority which oversees his work as a doctor, in London this would be the British Medical Association or the Medical Director of the hospital where he works. I would not allow such a person in the same room as my cat. Now, its obvious to me he is clueless about your disease. As Lexis has told you, its important to find someone who knows your disease. There are excellent doctors, you just have to find one, I just don't know how it works in America. I am furious on your behalf and will always be here for you. Please tell us how it goes. Have you asked anyone on this site to recommend a Rheumatologist near where you live. Autumm

I am so sorry! That is so terrible. A doctor should never make you feel that way!! I wish you were close to where I live so I could refer you to my rheumy. Sometimes I felt like he was the ONLY one who believed in me! he knew exactly what I had, knew exactly what to do, and I have never felt like just another patient to him. He told me when I discharged the hospital after first being diagnosed, "The good news is, this will all get better." I pray that you find a doctor like mine. So far I haven't need any other doctor besides him after being diagnosed. Move to Indiana! :) You've got some good advice here already. Know that we're thinking of you and always here for you!

Thank yall so much.... can't tell you how much your advice/opinions and support means to me.... I want to move on to another dr, and of course won't be seeing him again, but it's so hard...

When this all started 2 years ago, i saw SO many dr's in such a short period.. I could hardly walk, couldn't hold a fork, my kids, such through a straw, and breathing was difficult.. coudlnt' even make the right "cry face".. it was awful... i got SOOOOO sick of the testing and seeing dr's and everyone asking how my stress level was - OF COURSE IT WAS HIGH, but that wasn't CAUSING it all!! ugh..
So, after my lung function and everything crashed, and was in the hospital for over a week and IVIG was started.. I just had to take a break from the search.. from being looked at like I'm crazy, and from all these dr's and tests etc..... I have gone to my routine apts with the neuro at the university, but otherwise avoided all dr's.. as even any concerns with the neuro get dismissed (I think largely due to my younger age - 33).. .. So I'm so much better than I was 2 years ago, but feel like i'm slowly slipping back there, and worse in some ways(with the trunk weakness mostly).. I just want help, somoene to figure this out, or at least look under all the obvious stones..

It takes so much mental strength to get up the courage to go back to a dr.. and then waste the time for nothing.. that I could be spending with my kids.. but on the other hand, the ONLY thing that keeps me going back to these dr's is because I know I owe it to my kids to try and figure this out...

Maybe I will look at the MDA clinic - my biggest fear is getting my IVIG taken away - I have heard of 2nd opinions cancelling IVIG.. and that terrifies me

I am sorry I am not too up to date with your treatment plan. If you are seeing the neurologist why do you need a rheumatologist. The neurologist appears to be doing all the right things. Maybe if you have skin issues you need a dermatologist. Has the neurologist checked what auto antibodies you have, these can point towards management of this disease. A rheumatologist would be more familiar with these which is why we normally see Rheumatologists.. If you are feeling weaker its perhaps the Meds are not quite right . I would speak to your neurologist as he is your lead physician at the moment. He may well know a very good rheumatologist if you tell him about your experiences. You must not be afraid. You have to get the right treatment. I wish I could give you better advice. Things work so differently here in London. My rheumatologist is the lead, he refers me to other doctors if there is a need and they all come back to him with results,he then gives me all results as part of an overall picture . I don't have to 'find' my doctors. I hope it goes well, remember you are your own advocate. Autumm

Hi bny806. I am so sorry that you are having a difficult experience. On a positive note, you might consider it a blessing to find a different doctor!

I think Nanny is so correct about doing your best to take care of yourself. Most of our comfort with this disease is often the good decisions that we make with diet and supplements.

Good doctors can handle complicated everything - complicated health, people, records, medications, etc.. and run a well organized tight ship. I wish you well on finding a good team.

Keep us posted.

He sounds somewhat like the neurologist that I was seeing. He would type notes all the time that we were together and never had upto date notes and would need to find them. I once told him about something, which I can't remember now and he told me that wasn't his part of the body to treat. I am going to stick with my rheumy only. He is the one who helped diagnose my PM when I was in the hospital and my daughter wants me to keep him. He is in St Pete while I am in Tampa, so we have a little drive each month that I go, but we deserve the best. Our illness is not normal. It causes unbearable pain and expensive treatment. I hope that you drop him quickly and find a doctor who cares about you as a patient. My rheumy just graduated last June and was a fellow at USF when he diagnosed my illness.