Hi there buttercup. I had many disagreements with my doctor during the two years it took to make my diagnosis. I knew I was ill and nobody believed me because all my lab work was fine. I would argue my case and he would tell me to come back when I got worse. I kept going back and the last time I went back before diagnosis I thought I was dying. He ran more lab work and these results were off the scale. I got his full attention, he was unbelievably kind and supportive to me and has remained so ever since. He did tell me that he had struggled with my diagnosis. That's my story Buttercup. Autumm

Hi Buttercup, I have learned that there are several issues that many DM/PM patients face: 1.Getting a correct diagnosis 2. Getting the right medications that are most helpful. 3. Getting the correct dosages on the best meds to control disease. 4. Doctor awareness to run appropriate blood tests. 5. Doctor awareness on when to run an MRI, CT scan, or expensive tests. 6. Doctor ability to correctly interpret blood work and adjust medications up or down. 7. Doctor ability to recognize overlap diseases and run appropriate autoantibody or other testing. 8. Doctor ability to know the current and available treatments on what to do when the disease advances forward. 9. Doctor front office ability to negotiate treatment costs with insurance or finding a cheaper alternative treatment. These are the areas that seem to be issues that come up for many of us.

I have been fortunate to have excellent doctors. I make it a point to be respectful of all my doctors because we live in a world of electronic records. If I ever question a doctor, then I will quietly visit another physician for a second opinion. I know that all my doctors know one another too. I once tried a different rheumy because he was located 5 minutes from my home. He charged me $600 for blood tests. I decided to go back to my old rheumy 60 miles away after receiving the big bill. I simply told my old rheumy that the other guy charged too much but was an excellent doctor. My old rheumy did not mind my visit to the other doctor. I am still with my old rheumy with the 60 mile drive.

I do think it is important to maintain a positive relationship with any doctor. A second opinion is fine, but also be prepared that the second opinion may agree with the first opinion when this disease advances. It does get to the point where treatments get limited too. The doctor and medicine can only do so much. I think some patients expect the doctor to be superman with a cure. It is important to know this disease and have reasonable not unrealistic expectations.

Bravo Trpt. So very well put. We can sometimes complain a lot and in the beginning I was certainly scathing about all doctors. I have come to have a lot of respect for my Rheumatologist but I don't forget he had to accept I was ill before I saw the very caring man he really is. We have come a long way in our doctor / patient relationship. Autumm

I am an avid reader in TMA at myositis.org. Free to join and very informative. I am a nurse, and if i do not understand the plan i ask many questions and get them to convince me it is the best plan.
It is hard to find doctors that know enough about myositis...
specialty clinics hvae been the best for me and the TMA medical advisory board of directors...
best to you, so sorry for this happening to you.
shawna

Hi Friends...Meow,

I couldn't ask for a better Rheumy. He cares so much for all his patients, and he really works with me. I see him every 8 weeks, because we are trying to get rid of the prednisone and lower the MTX. I have other diseases that complicate the Poly meds, and he allows me to tweak his prescriptions down to what I can tolerate. He doesn't get upset if I disagree with him...he says I know my body and he'll consider my limits. I say, you know the drugs & my blood work, so I will always try the med you prescribe. He is truly a blessing. His name is Dr. Tapal, and I have been seeing him for two and a half years.

Our current "disagreement" is over the Prednisone. I think I should take no more than 15mg, and he wants 20mg. My complication is my diabetes 2 is way too high. I can only "stomach" 2 shots a day. So, I've gone down to the 15mg against his instructions, and we must wait for the new CPK (done on 4-15) to find out if I was wrong to drop the dosage.

Between keeping my stomach quiet, my poly CPK acceptable, and my diabetes A1C acceptable, I sometimes feel like a juggler.

Purr,
=^.,.^=

Hi Buttercup. None of this is easy. You have a good doctor and you communicate well patient to doctor. I hope it all goes well fir you and your good doctor will still be there either way to help you. Best wishes . Autumm

Buttercup, you mention the A1c and Diabetes. i had trouble in the beginning and have gotten my AIc and fasting glucose to bargain basement levels with a plant based diet. I am a fan of Dr. Joel Fuhrman and he has a new book on Diabetes the end of diabetes, but i used Super immunity to get mine in control and have not had any issues since. I lost 45 lbs too while on steroids... Just a thought, there are multiple ways to manage diabetes, and even with Type 1 this diet can help get you to the lowest amount of mediations... Might be another way to help shift things.... Best to you.

Meow,

Thanks Shawna & Autumm for all your encouragement/advice.

Finally, I think I've hit on a balance. Blood sugar is still a bit too high, but I told my diabetes doc that I must take at least 15mg Pred until my next blood test.

Purr,
=^.,.^=