Polymyositis & Dermatomyositis Support Group

Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.

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jfreeze0 05/06/2011

My family doctor's office called me today and she needs to see me about some letter she rec'd from my neurologist. I don't know about what. I don't care to see this woman at all. She brings me back to a dark place. I was hospitalized last year for 7 months, during which time, well, frankly I nearly died a few times and I think I was going to languish there and die if my family hadn't of discharged me. Either she was ignorant or too arrogant to admit that she didn't know what was wrong with me - and she was in charge of my care as she had privileges at the hell hole of a hospital I was at. I asked repeatedly - my family asked repeatedly - for my specialist to be kept informed. I asked doctors, nurses - yeah yeah, we'll check into it. The nurses would call my family doctor and she would laugh them off. They're always calling about you because you're always throwing up. Maybe throwing up is your new normal. Do you know what that does to a person - telling them that throwing up 6 times a day - VIOLENTLY - while being tube fed in a way you're not even supposed to be able to throw up - is NORMAL??? And what the rest of your life will be like????

I can't stand the thought of going to see her. I've seen her twice since I was 'released'. I went straight to my specialist who figured me out within 2 weeks.

I gave up - I gave up on living. She brings me back to that dark place. I don't know if I can be her patient anymore. Certainly I don't trust her with my care - so how can she be my doctor anymore?

eddiesgal 05/06/2011

I'd ask that your doctor or the neurologist forward the letter to a different doctor that you are comfortable with. don't put yourself in somebodys hands that you don't feel are capable.
Blessings,
Kim

lexisgirl 05/06/2011

I agree with Kim. Find another GP and have your specialist send it there. It is probably your health notes and your GP wants to talk about it. If you don't trust them, you don't need to go. But you should know what the concern is. Another option is to call your specialist and see if they can tell you what was sent to your GP.

jfreeze0 05/06/2011

Yes, I wish doctors would copy you on their letters as well. I used to have a specialist that did that, and I really appreciated having my own copies. I guess I have to go and see what this is all about. I don't see that particular specialist often (it's the neurologist who sent the letter). My main specialist (my respirologist) tells me to call and leave her voicemails and she returns them promptly! She is the most awesome doctor EVER!

It is really really hard to find a doctor who is taking new patients. I can start trying to find one. I have been seeing this particular GP since I was 12 years old. I used to only think she was incompetent in terms of managing her practice (she is always 2 hours behind schedule!), but now I just think she's plain old incompetent!

deleted_user 05/07/2011

Try going on the website rate your doctor, see what others have to say about her. I have a fabulous doctor, what area do you live in, I'm in Port Coquitlam, if you're out this way I can give you her name. I agree with all the other gals, get a doctor you're comfortable with...

jfreeze0 05/08/2011

I've been on rate my doctor and others mostly complain about the amount of time you have to wait for your appointment (she's always 2 hours behind schedule - at least!). I was used to that, but it was just the sheer arrogance and incompetence with my care while I was so very sick that was the final straw. I'm out in Delta, so PoCo is a bit far - though thanks. If you know anyone out my way, I'd be glad to hear about them!

deleted_user 05/08/2011

I agree I would absolutely have the neurologist forward the letter to a new Dr. Be your own best advocate and don't accept anything but the best health care.

deleted_user 05/11/2011

There are a lot of doctors out there and while it is hard to find a good one, this one is definitely not one of them, and I'd say I'd keep looking and avoid this one like the plague. My mother had a doc like that who wouldn't listen to anyone, kept pumping her full of antibiotics that she was not only allergic to, but what she had was a systemic Candidiasis infection and antibiotics were making it worse. He killed her.

Run.

Deb G
KY

deleted_user 05/11/2011

jfreeze i agree with everyone else...find another dr....you need to have trust in your dr. keep us updated on your progress...

hugs

barb

jfreeze0 05/11/2011

Good Lord I'm so sorry to hear that about your mother. I hate drug-pushing doctors. My Dad's doctor is an over-prescriber, in my opinion. We put our trust in these people and if you've never been really sick, you don't know how bad they are! I'm seeing her in an hour and a half to see what the heck she called me in for. I expect to be home in 4 hours. I HATE going there - what a freaking waste of time!

nanny1611 05/11/2011

When you get home, jfreeze0, please let us know how your appointment went.

jfreeze0 05/11/2011

Well, it turns out my neurologist wrote her a letter concerning my the blood tests that she had me take. I had told her (the neurologist) about the pain in my legs and my hands don't work right. She prescribed Lyrica but it isn't helping much (except for making me gain even MORE weight). So as it turns out I have a B12 deficiency. My family doc said this is probably as a result of my not eating for practically an entire year (2010) and my body just hasn't caught up yet. We are going to try just taking B12 and B6 orally and if my bloodwork doesn't improve, I have to have B12 shots. So I'm really hoping this helps!

I didn't let my bitterness get the best of me and I just was friendly and talked about what was relevant. AND I actually left her office at 5:00! AMAZING!!! (for a 3:30 appointment)

nanny1611 05/12/2011

Thanks for updating us, jfreeze0. I hate to hear that you have a B12 deficiency, as it can cause many problems. But at least it's something treatable. Last week I started taking oral B12 myself, because I was experiencing pain and pressure behind my ears, plus noises and ringing in my ears. My ears started improving in just a couple days. I hope and pray that the B12 and B6 help you a lot and help you quickly.

BTW, I'm proud of how well you handled yourself. Thanks again for sharing with us.

jfreeze0 05/12/2011

It causes ringing in your ears, too? Wow, I'm happy to hear that because I even had my hearing tested as I was having trouble hearing and ringing in my ears and had no clue what that was about because my ears are fine! Hearing checked out good (for a middle-aged person - hahaha). Boy, a couple of vitamins and I'll be all fixed up (yeah, right!). I'll keep you posted on what improves - though first I have to get to the store to actually BUY the vitamins. And God, I hate taking vitamins - I find them stinky.

deleted_user 05/12/2011

I just thought I would add that I started B12 shots 2 weeks ago...I go once a month for it. As I have B12 deficiency and I am unable to take the pill form. So the shot it is and of course they stick right in the muscle on my left arm. I was told to put ice on it asap because it can cause problems to the muscle...go figure!!!

Hugs all!!!

nanny1611 05/12/2011

Yes, a B12 deficiency can cause tinnitus. There are other things that can also cause ringing in the ears, but a B12 deficiency is a common cause.

My B12 is in the form of a small pill that dissolves in my mouth. They are called B12 dots. I was glad to find them, because I couldn't face swallowing another pill. I certainly hope you can take something as simple as this dissolvable kind.

BTW, have you ever tried a gluten-free diet? Gluten intolerance can cause digestive problems plus many vitamin deficiencies. Just a thought.

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