First part of my day was spent helping Julie with this evaluation for her mental health place. Evidently they know about the complain now because they were nice. Still her Case Manager does not have a bit of empathy for Julie or myself. However, it looks like Julie is going to get the changes that she wants. So, we are going to take that as a victory and see what happens. I hope so, because it would give me some relief.
I went to my Rheumy today. He's mad at me because my PCP upped my prednisone to 20 mg because of my breathing. I told I was still having a lot of chest pain and breathing difficulties and that I have a history of Pericarditis so I want to be careful with that. He didn't even come listen to my chest. He just said to go to Urgent Care or something. By the way, I've done that before and they've sent me straight to the Rheumatologist.
Then I ask him if he is going to support my filing for disabilty. No, because as far as he is concerned I don't have RA because my bloodwork isn't showing the markers for it. It doesn't matter to him that I have 6 years of charts and MRIs showing RA. Because I don't swell like a lot of people. I said I wanted xrays of my hands and feet which he ordered (oh, and they are going to do my knees again -whoopee). He said he is treating me for Fibromylagia not RA and he will not support disability for Fibromylagia for anyone. I should go back to work.
I kept asking him what about all these autoimmune diseases I have. Well, the bloodwork doesn't show it, so he won't support it. He's treating me for Fibromylagia, that's it.
I got really angry which he didn't take well. Basically, he said I could get a second opinion. He sounds just like my PCP. You don't like what I dictate, too bad go somewhere else. But that is not a simple process. I want my surgeries first and to find out about the hematologist.
Funny thing is that he is taken me off all the meds except Plaquenil and wants to get me off the Prednisone. My inflammation markers since then are substantially up with all of my sinuses and lungs inflamed. And we know that Fibromylagia is not an inflammatory disease. Also, my joints in my fingers and toes are hurting like crazy. And, he didn't take in consideration that I'm on 20 mg of prednisone and shouldn't be showing inflammation.
Also, my bone scan (remember I'm having knee surgery in about a month) shows that my knees look pretty good. Okay, once again, MRI 4 years ago says I need total knee replacements. Xrays 2 years later say bone on bone damage. Xrays back in June say my knees are ok. MRI in July shows torn menicus on left knee, torn ligament on right with bursitis, RA and rice like RA damage and OA. The xrays on my knees in August confirmed this. Now the bone scan says my knees are fine. The Rheumy says the knees are fine. But I am having knee surgery. Bone scan did show some growth on the knee bone and the shoulder cyst. I don't see how that they could have even read that right. I looked at them and compared them to ones on the Internet. So, what will my ortho find when he does the surgery. Will I be a simple outpatient (hope, hope, hope) arthoscopy or will he get in there and find I need a knee replacement. Does anyone else have this kind of trouble with films?
But my ortho and my neurologist are sure I have severe damage from RA. I don't know if my PCP is going to support my disability either.
The Rheumy sent copies of his notes and the bloodwork with me. He did not make a follow up appointment. He is obviously hoping that I never come back.
And, he is not giving me any treatment at all for Fibromylagia. Nothing. That's what he says he is treating me for and he's doing nothing but saying I need to see a Pain Management Specialist. So, what use is he?
I am so upset. This one guy could completely sabotage my SS case. And, he is an idiot.
Now, I have to go back and fight with my PCP to get another Rheumatologist. The others have waiting periods of four months. This guy has no other patients waiting in his office. I wonder why.
So, when I calm down, I'm going to request a new Rheumy. Then I'm going to call my previous Rheumy's nurse and ask about this whole situation. Because, for one thing, he is implying that my former Rheumy was treating with medications that I shouldn't have been on and that have now made me very sick. He's also saying I don't have RA and that he is not going to write that I have RA just based on two blood labs.
Then, I think I'm going to ask my former boss if she would be willing to write a letter stating how difficult work was for me. I think she might.
Yesterday, I hurt so bad from the running around that I had to do. And, I could breathe all night, my chest was hurting and my heart was racing like it has done when all the systemic stuff starts up. My former doctors never treated me with such disrespect. I never had to fight like this. Of course, then I was paying everything out of my pocket with really bad insurance. I guess that because I'm too sick to work I only get bad doctors who will not support a disability claim.
I asked him why hasn't he even requested a look at my medical records. Oh, that all falls on me. Don't you think if he was competent and we were having this kind of disagreement about my care that he would want to see them just to make sure? I don't just want to transfer them anywhere because in AZ you can transfer them once at no cost. After that, there is a charge. With 4 2" folders of appointments and reports, I don't want to do that until I feel comfortable with my doctor. So, I didn't volunteer. But I think he should have asked and not given me all this grief.
I'm starting to think that this is all me. His notes made it sound like I was very resistant to his treatment. Well, he was taking me off MTX and the biologics forever. I was a little resistant until he explained it. But I did it.
Am I supposed to just sit there and pretend I'm an idiot or stupid to stroke their egos? Even if I am, I can't do it. If the neurologist and the surgeon are both seeing all this damage then it can't be all in my head. Six years of struggle isn't imaginary.
I just can't go back to work. Sitting for an hour at an appointment is almost more than I can bear. I fought so hard to keep working. I was in so much pain all day long. I've done everything to get as well as possible. Now, when I need help, I get slapped down over and over again. He made it sound like I was just lazy.
Can I say that today, I hate my life? Or, am I just crazy? Would someone document that please.
What a MORON. I dont know what else to say :(Oh Deanna, I am so sorry! I had x-rays that came back "normal" after x-rays that came back showing early RA also. I think that the docs that read them get lazy.
Your PCP can do the SSDI paperwork as mine did. Also I suggest getting to a psycologist or psyciatrist and give them the works. One of the reasons SSDI accepts for being unemployable is severe depression, cognitative problems. My rheumy did not do my SSDI paperwork so maybe you can find a good PCP to help you.
I have neg. labs and always have but do present RA physically. I went through so many docs due to the neg labs and finally found a great female doc. Maybe a female would be a bit more compassionate. You do need your doc behind you for SSDI.
I will be praying for you and make those calls to get youself another doc. Question the nurse prior to making an appt. to make sure your needs will be met.
It sucks because my former Rheumy was behind me. He filled out so much paperwork on my behalf. My PCP is really hard to deal with too. If I start shopping all over again, I lose out on my PT, my neurologist and my ortho who I think are helping me. I have no guarantees that a new PCP will be responsive. This was my third one since I joined Mercy Care. I will ask about whether he will help me. Unfortunately, I just put all those doctors in my appeal that's already on it's way to Social Security.
I do think I will ask for a referral though to a psycologist or psyciatrist. Actually I am working on it. But it hasn't happened. It's lost somewhere in the system. Then they put you with the Value Options people, the ones my daughter has that I am so throughly disgusted with.
I really don't want people to question my sanity. But I have no doubts that I am quite depressed now. I wasn't back in August when I started this. I'm pretty sure I'd cheer up remarkably if just a few good things would start happening.
Bonny, I took your advice. I've been trying to get it through anybody's head that I needed the help. Only no one has been listening. So, I called the crisis number here, bawled my eyes out and then they told me they could give me the referral to a counselor. So, I can call and set up another appointment for maybe next week.
I don't know if it will help. But at least it further documents how depressed and hopeless I'm getting. I know everyone here says how strong I am. But I'm not, not at all.
Of course, last night I had almost no sleep because the chest pains were so bad and I couldn't breathe. I was playing the decision game of whether to go to the ER or not. But I took my Nitro and waited it out.
I missed my PT today though which was disappointing. I really feel like it helps me.
The good cry helped open up my sinuses though. So, Bonny, I really, really appreciate the push.
I think so much of all of you here. That's why I keep coming back. All of you have become such good friends to me and so very supportive. The rest of the world can be so cold. But the warmth here is like a cozy fire. Thanks.
I'm concerned about my appointment with the hematologist tomorrow. So, please keep me in mind.
Deanna,
**hugs**
Lori
Deanna - I am sorry you are going thru all of this.
Hang in there, things will get better.
Huggs
Oh my DEanna, this all sounds so familiar, I have been in a similar situation as well, it sure makes you want to just give up on all the RA and osteo and fibro. If I knew what to tell you to help you I would, but truthfully, I have not a clue.
I sure hope things get to be better for you, it sure is a mean and cruel world out there sometimes.When you don't feel good and can barely get around it is even worse.
jode
Deanna, You neeed to get rid of ANY record you can of seeing this guy and find another rheumy quick. WHAT A JERK !!! WHAT AN IDIOT!!!! WHAT AN IMBECILE? WHAT A COLD - HEARTED PRICK !!!! Can I say that???? That was the last thing you needed. I hate all the bad things they say about my condition but at least I get validated. (Not necessarily at homeI am going to call the my attorney tom. to discuss this new devel. and I wanted to know if you had done this yet?
See what they think too....
Deanna below is the email address for Carolyn Magura who is the SSDI guru on the form "But You Don't Look Sick". Please email her your problems as she has some great insights and her advice will be some of the best. Her goal is to empower those of us trying to get our SSDI.
Great news about the Psych. I know that you are not crazy and neither am I but the call you made will help in your case. They award for severe depression much quicker than physical disabilities. Mine explained how I cannot think and remember enough anymore to do the work I once did.
Prayers are always with you Deanna,
Deanna. You were treated less than human at your doctor appointment.Again, thanks for all the comments. I really, really needed your support tonight.
Roxy, it's too late to get him out of the picture entirely because I already listed him as one of my new docs on my appeal that is already in the mail. I can only do damage control at this point.
Julie was really upset at what he said and she absolutely wants me to see a different guy. She said, "Mom, you can't even make it through the grocery store. Are you supposed to work." She thought he was just trying to get me to doubt myself. She's also worried that he is taking me off medicines that maybe he shouldn't be and endangering my health. That's how I've been feeling especially when I start getting inflammation in my sinuses and my lungs. The majority of my symptoms have always been in the organs rather than the joints. I don't ever swell up like some of you do.
Bonnie, I'll try and contact her. Not exactly sure what to say though. I'll have to go spend some time over there and think about it. Thank you again.
Crunchy, we do seem to track, don't we. Okay, so we went through these incredibly hard decisions on quitting work and now we are in remission. What kind of cruel joke is that? I think the reason my bloodwork is so much better is because I am not working. I think the same might hold true for you. I was always pushing to the extreme. I had all the stuff with Julie (even worse than what I have now) and the stress of working. Quitting has to have some effect, don't you think? And yes, I am going to be addressing how to handle this doctor with my lawyer.
Lorster, I find your comments really helpful. I just might consider reporting him to the state medical association because I do feel that he is endangering my health and not following safe protocols. I mean here he comes on scarying me to death about how the MTX is going to kill me. And Julie reminded me that he didn't give me a valid reason why he thinks my immune system is destroyed. He just said that my first visit. I was assuming it was because he was taking into consideration all the medical summary I had prepared for him. But obviously that means nothing to him. So, maybe I could be trying another biologic. Certainly, two orthos and one neurologist do not feel my RA is under control.
Thanks everyone. This just crushed me today as it is so important that you have a good doc. I believe that a good lawyer will help you get an adequate review to counteract this. But when you think about it, I still have 6 years of history from various specialists all confirming these symptoms.
Deanna, another thing that came to mind is....you should request a "careUgh. My head would have exploded.
If The Idiot ruins everything and you need a dx quick, do you think you could make an end run around your PCP and get a pro bono appt at a specialty hospital/clinic?
Can you get to the Mayo Clinic in the Scottsdale/Phoenix area? They're more likely to provide charity care if they know you're only coming in for dx and not long term care. http://www.mayoclinic.org/billing-sct/charity.html
I had my foot surgery done at the Mayo Clinic in Jacksonville, FL. (They accepted what medicare would pay and wrote off the rest.)
Deanna, What Roxy wrote, I second. I agree with everyone else too, but I want it said with Roxy's passion.
I didn't get exactly why you have to change PCPs to change Rheumy's, and if that's the case that sure does make everything a little more complicated. But no matter what you have to get away from that rheumy. I'm preaching to the choir, I know, but it just needed to be said one more time.
I had a cardiologist for a short time who was about that much of a jerk. Horribly rude, even with my husband with me, and, I think in spite, wrote me a prescription that I totally distrusted and wouldn't take till I went to see a new doc. After seeing the new doc I realized that if I had taken the prescription as the first guy had written it, it could have killed me given my condition.
I think my fury and frustration with that fool took five years off my life. I'll bet you feel at least as bad after dealing with your sick, unprofessional fool. He's not even a real doctor, because he has already broken his professional oath of responsible care.
The medical stereotyping and prejudice against fibromyalgia really disturbs me, though I don't have it and don't want it. I think one day the cold-hearted ignorance will come back to bite them when medical science has untangled more of the fibro mystery. Until then, those of you with it suffer so much more than necessary.
That aside, since the preponderance of your medical history shows you do have destructive RA, no matter what your current blood tests show you still have RA and are clearly suffering from it. Please hang in there until you get yourself into the hands of a responsible rheumatologist.
I loved the idea of your having a care conference. It makes so much sense.
It wouldn't hurt to ask Binder & Binder if you can retract that docs name on your appeal. It's worth a try.
Thinking about you.
From where I sit, it seems that the states with the most illegals is hindering those who really, really need disability benefits. And Arizona and California are 2 of them. They are giving all of the freebies to the illegals and their children. I know they are human beings like the rest of us, but PUUULEEEZ! We were made in the USA!!!I don't have to change PCPs to get another Rheumy. I just get the same kind of treatment from my PCP. Remember how much trouble I went through to just get a wheelchair, that the PCP refused to write for an electric one? He said go get a second opinion on that one too? I did. I called my ortho who wrote the script up in no time at all.
A Care Conference sounds great unless you are stuck in the middle of some a pretty uncaring system. I asked for a Case Manager four times and the insurance company lost the first three requests and denied the last one because they said I would need to apply for Arizona Long Term Care (which you have to need nursing home care in order to qualify). Before that, they're excuse was that I was not terminal.
Honestly, I'm afraid to sit in a room with these men and then have them all gang up on me. I've seen it happen over and over again in my daughter's care and then you have no recourse.
I'm going to contact the office manager and my PCP's office today. She is really nice and ask her what I can do. She's kind of a problem solver type person and always asks about me when I come in. The first lady that I dealt with in the office about the wheelchair isn't allowed to talk to me any more after this one intervened. She instead assigned a delightful, hard-working compassionate young woman that has worked really hard to get me what I need. That way, maybe I can circumvent my PCP who I don't want to deal with at the moment.
I am also going to put a call into my former Rheumy in context that this new one is inferring that his care of me was criminal. I don't think my former Rheumy would take too kindly to hearing about that.
If I am up to it, I am also going to do as suggested and call the State Medical Association.
I'm going to think about the Mayo Clinic. I used to work right across the street from them. It's a really long drive though. They will do full workups and I'm basically looking for a second opinion of high caliber to wash out this guy's. So, I am going to consider it.
I may even call my neurologist and talk to him. He was quite convinced that my autoimmune stuff has destroyed my nerves. He said that the Rheumy should be fighting for me for disability. He said he would do more MRIs and tests if I wanted them. I'm just so tested out.
I know that the ortho believes that I have RA. It shows up on the MRIs. The previous ortho said that neither my RA or FM was under control.
I know this doctor is an idiot and it is what I would have told any of you. But he has used scare tactics and intimidation to force his beliefs (which are ignorant and stupid) on me. I'm not flaring right now. But my joints do hurt, especially in my hands in ways that they haven't since before I started MTX.
Thanks for the support. My head is a lot clearer this morning. I'll call about the counseling today as well. Not everything this guy tried to write is damaging unless it's his next letter to my PCP. He really confirms the diagnosis of FM big time. He also lists that I have all these autoimmune diseases.
Honestly, I just don't think he likes a woman questioning his authority. He's evidently Muslim, but his last name sounds like he is from India. I have had other very wonderful doctors from India. But maybe his personal beliefs which he is so strongly intuned with are clouding his medical judgement. Something is.
I am scared though because I feel like he is putting me at risk because he is not willing to treat the RA. He's not even willing to admit I have it.
Deanna, I wish there was some way I coud help. This is all so unfair.
You know, the more I read about these terrible docs, the more I picture myself getting kicked out of a hospital in the near future when I get insurance....
:|
Deanna, I REALLY wish I could go with you. I've torn some of Justin's docs a new one, and gotten what he needed. NOt saying I'm a pro, I'm just a b*tch :)
Katie, I'm sure you'd make a great advocate.
I left a message for my former Rheumy stating that this one has stated that the care he was giving me was criminal and how upset I am. I hope that he will respond to it. I'm sure that he won't like it.
I called my PCP's office and talked to the sweet girl at the referral desk and she promptly got me a referral to another Rheumy for April 4th which really isn't that bad. That's just over 3 mos and since my bloodwork is stable, I can handle that. If things flare in the meantime, I'll go to my PCP or the ER, whatever takes.
I checked out filing a complaint with the Arizona Medical Board. Oh, that is serious stuff. It, of course, doesn't cover him being a basic jerk. But I do feel like he may be endangering my health with his treatment of me. They are sending the forms to me. I have to provide all these medical records again, etc. And, it's a whole other process. I don't know if it's worth it. But then I think what about the next person. Plus, if I file a complaint with them, plus have it documented that I was so upset over it that I had to ask for counseling, I think it makes a good counter to whatever he might put down. I can't get him off my record. It's just too late for that.
I still have to call Binder & Binder and see what they think.
But what do you think about filing this formal complaint? It really makes it a legal issue so it is much more serious. I'm tired of filing complaints but I also tired of being beat down.
Thoughts?
Deanna I try not to make decisions when I'm emotionally upset. Filing with State med board on this jackass is not urgent. Sleep on it,say over the weekend. Your complaint will still be timely even if you don't file it until Ground Hog's day.Marian, I'm am calmed down now. Well, I'm still mad but not upset like I was yesterday. The more I think about it, the more I want to do it because it's not fair that he is taking a blanketed approach to disability for Fibromyalgia patients. That hurts everyone and is a disgusting attitude. And, I do believe he has and is causing me harm. He certainly is causing me undue stress and is refusing to treat for the condition for which I went to him on the basis of very little clinical information. And, he cannot show any signs of treating me for FM, the one thing he says he is treating me for. He has put me in a perilious position based on personal beliefs and not medical knowledge. That's just wrong.
There are too many doctors out there like him. I don't need another mess. But if I don't, he just gets away with this kind of behavior. Even if the board doesn't do anything, it will cause him to have to go through the trouble of replying to the board. If he doesn't, he gets some kind of sanction. Just that might temper his actions a bit and make him think twice before sending out the same message to another patient. He was basically saying that I do not have RA. It doesn't matter that is shows up on my MRIs. He doesn't care about seeing the medical evidence. All that matters to him is those two bloodwork panels. For all of those on this board that have had doctors use just bloodwork as a reason not to diagnose, I think do something about it.
Besides, he said something to me that makes me wonder if he hasn't been already been up before a review board. He kept saying that he could get criminal charges put against him for prescribing MTX to me with that blood work. I don't know if that's true or not. But I had approximately the same blood results from my previous Rheumy. So, either my previous doc was a total quack which I highly doubt. Or, this guy is. I'd like to make the quack go away.
First I cry, scream, etc. Then, I want to give up and then I get mad and say I'm not going to take being treated badly. Because if it not for myself, then it is for the next person that comes walking unsuspectingly through his door.
By the way, I don't remember him ever checking me for the trigger points. Yet I have 16/18 on one report and 18/18 on another. If a doc had had 18 trigger points, which hurts like hell, I think I'd remember that.
Oh, and I did call Binder and Binder. I'm liking them more and more. They answered my questions even though I haven't signed with them. They couldn't get real specific because they cannot legally advise me until I sign. But they made feel very comfortable with them and had a supervisor talk with me. This is the second time that they've been cool about it.
They did say that it is highly likely because I have not been off work for a full year that this is the reason I got denied. It's just because they deny so many applicants. So, if your applying and get denied just keep going with the appeals process. Regarding my daughter being disabled and me giving her rides or aid, that just shouldn't be true. It is highly unlikely. They really couldn't advice me yet on what to do about this particular doctor. They said at this point I should just do what I feel is right. I think that the fact that I've immediately requested a new doctor will help and is another reason I want to file a report against this one. It states clearly what I think of his humble opinion.
Deanna...my advice to you is to sign with these guys right away. They are supposed to be one of the best companies out there right now. The sooner you do the sooner you will have more support...they sound like they really have a lot more to offer once you get contracted...Deanna,
Any DR. who makes you feel bad about yourself, who intimidates you or suggests that you are essentially a hypocondriac deserves to be reported, shut down and shut up(physically if possible)...My mom had such a dr, and she put up with his belittling, condesending crap, right up to the point it was discovered (in the ER) that she was dying of liver disease...at which point it was too late. We discovered she was terminal exactly a year ago this week, and she died in May.
I know I am rambling, but my point is, tolerating a bad Dr. really can kill you! Do not go without a fight!
Laura T
Laura, I'm not. I am going to file a formal complaint. I believe he has tried to browbeat me and scare me into complying with his idea of a treatment plan. And, I know what you mean about doctors not seeing things that are wrong. My best friend's husband died of colon cancer suddenly after being ill for a long time. They never ever thought of doing a colonoscopy on him and he was definitely in the age group to consider that.
I am so sorry that your mom suffered that way. The loss of that must hit you very hard especially with me bringing up my struggles. Thanks for warning all of us about how serious it can be when doctors ignore us. You can still file a complaint with your state medical board as family members can file. But you may just want to put it behind you. I am so sorry for your loss. A mom just can't be replaced.
Crunchy, see my good news posting. I did decide to go with the local lawyer instead but for very good reasons.
I don't understand how that rheumy could have criminal charges brought against him for rx'ing MTX to someone with normal bloodwork because what ever happened to sero-negative RA like I have! he had to have been lying to you.You make a very good point, Bonny. I didn't think of that. His line of thinking was because my SED rate was so high and that I was so severely anemic, that was the reason.
The more I think about all of it, I can see that he wanted to just push me off my meds. Everything has been scare tactics.
Fortunately, my new lawyer was really familar with the Rheumys in this area. He knows which ones support disability and which ones don't. That is so important to my case. I would have never got that from Binder & Binder. And, he'll go with me to all court hearings. I will work with his assistant most of the time, but I am more than welcome to call him regarding anything. Now, I'm not used to that with any lawyer.
Also, Bonny, he really strongly emphasized how much I need to seek treatment for the depression even if it meant an in hospital stay. I feel like I have someone that is already working for me instead of weeks of just trying to get the information in over the phone with the other one.
Your advice has been immeasurably helpful.
Great news Deanna! We all must help each other and I have learned a lot on this board. These are the only types of diseases that I have seen where the medical system fails so many of us.
You take care and keep us informed!