OK what should I expect....

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mama6
Regular Member


Date Joined Jul 2010
Total Posts : 416
   Posted 8/18/2010 7:09 PM (GMT -7)   
As some of you know Friday I go to the new Rhuematologist to try and get test done for the RA and PSA that my past Rhuemies RN suspected. Since my last Rhuemy was a quack and did basically nothing, I need all of your help. What should I expect if it is a good Rhuemy? What test? What questions should I be asking? They know at his office  am there for a second opinion, because I know this is not just Fibromyalgia.I don't know if that was bad or good to have told them..but didn't want them to wonder why after a year I was changing Rhuemies. Do I mention everything the other did wrong? I don't think I should but how do I phrase that what he thought was based on nothing? No test, or whatever. I thought this one was good when I first saw him, although my husband didn't like him. My hubby won't be able to be there on Friday, so it's just me and my judgement..which I have been so desperate to feel better I have settled more often than not. So how do I go about this? No, I don't want to overthink it but I do want to be prepared this time. Thanks for any related stories or advice. Heather yeah
Big Hugs, Mama6

DX. with Fibromyalgia, Narcolepsy, Poss. RA or Psoratic Arthritis, Herniated disc 3x in last 7 months
Meds: Nuvigl, Cymbalta, Tramadol

Mother to 5 wonderfull kids. Oldest is 18 and just left the nest for animation school. Youngest just started 2nd grade. So I am crazy, and feeling my age plus some.

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 8/18/2010 7:32 PM (GMT -7)   
Hi Heather, when I saw my rheumy she made me strip down to my bra and pants and checked over every joint in my body. She sent me for x-rays of my feet , hips and hands/wrists. She did a full blood test checking for inflammatory markers, sedimentation rates, RF factors, red blood cell levels, white blood cell levels etc etc. She took my full history of symptoms, my family history etc. Then told me what she was going to do, (started me on sulphasolasine and prednisone for 3 months) when I had to go back to see her again. She explained it could take 2-3 months for the meds to properly work etc etc.
I've always felt very listened to and cared for by her treatment. I ring her up if I'm in trouble and she will inject joints or drain fluid build up or put me on higher doses of prednisone to get me over flares, including pulses of prednisone when things are really bad. She is extremily positive, I leave nearly always feeling like right this will work.

So I would go in with an open mind, expect them to check out your joints and really listen to your story. Make sure you mention everything that hurts, even if you think its unrelated. If prednisone helped, you should mention that. Because that is a sure sign that there is some sort of inflammation. I wouldn't go in with negative stories of the otherdoctor. Just say you're seeking a second opinion, theres no harm in that when its an AI diagnosis involved.

And best of luck, golitho

skeye
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Date Joined Mar 2008
Total Posts : 2976
   Posted 8/18/2010 7:46 PM (GMT -7)   
Hi Heather,

I only saw a rheumatologist once & as expected he couldn't help me (my neuro-ophthalmologist sent me there for a second opinion to rule out a particular diagnosis, he did rule out that diagnosis, but was stumped in terms of coming up with another diagnosis). He didn't do much other than talk to me, look at pictures of my eye that I brought with me, and look over blood work results (he didn't send me for any new blood work, because everything he could think of testing me for, I'd already been tested for by my ophthalmologist and neurologist). That being said, I'm not your typical patient that is sent to a rheumatologist, as I only have ocular symptoms, therefore my experience probably isn't too helpful.

However, I do want to wish you luck with the new doctor. Seeing a new doctor, especially when you have as many problems as well all do, can be very nerve-wracking. Make sure to bring a list of questions & complaints with you, so you don't freeze-up and forget to mention something. I also find it helpful to bring a brief list of my medical history, as it pertains to my current problems (ie. doctors seen, tests done, meds tried, procedures tried, etc, all with dates & results). Please do let us know how it goes.

hugs,
Skeye

Post Edited (skeye) : 8/18/2010 8:49:28 PM (GMT-6)


mama6
Regular Member


Date Joined Jul 2010
Total Posts : 416
   Posted 8/18/2010 7:47 PM (GMT -7)   
Golitho,
That was very informative and well disheartening as well. I say that because my Rhuemy moved both of my legs and felt my wrist, that was it each time for a year and maybe 8 apps. When I mentioned that I took the predisone for my herniated back and all of a sudden my hands, elbows, knees, etc..basically all of it stopped hurting, and when I went off of it, it hurt even worse he said that was to be expected. I said well with Fibro there isn't inflamation it's the way your body registers pain so that seems odd. He said well it happens that way sometimes. then his Rn ran the crp test(a month later..because I complained of my feet and ankles..he did not order them she did) they came back elevated twice in a month..and nothing from him at all. nono  I won't bring all of that up with the new one.That sure burns me up though. I sure hope it goes as good for me. thank you, Heather
Big Hugs, Mama6

DX. with Fibromyalgia, Narcolepsy, Poss. RA or Psoratic Arthritis, Herniated disc 3x in last 7 months
Meds: Nuvigl, Cymbalta, Tramadol

Mother to 5 wonderfull kids. Oldest is 18 and just left the nest for animation school. Youngest just started 2nd grade. So I am crazy, and feeling my age plus some.

mama6
Regular Member


Date Joined Jul 2010
Total Posts : 416
   Posted 8/19/2010 6:16 AM (GMT -7)   
Uhg so nervous...I hope he's compassionate and caring. I hate starting over with dr.'s and teat and all that. It makes the last year and a half that I have been going to different ones feel like a waste of time. I mean who wants to give up their life for any amount of time? I just hope to get answers to what going on, so I feel believed. Heather
Big Hugs, Mama6

DX. with Fibromyalgia, Narcolepsy, Poss. RA or Psoratic Arthritis, Herniated disc 3x in last 7 months
Meds: Nuvigl, Cymbalta, Tramadol

Mother to 5 wonderfull kids. Oldest is 18 and just left the nest for animation school. Youngest just started 2nd grade. So I am crazy, and feeling my age plus some.

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 8/19/2010 10:44 AM (GMT -7)   
Hello Mama,

First and foremost.....I hope you new apt goes well.

I'd also like to caution you, however, on giving negative feedback on another Dr on your first visit. It could easily look like you are just a patient who was not satisfied with what the other Dr said so you wanted to find somebody to tell you what you want to hear.

Please don't get me wrong.....I know you are there for help and for information. I do not think you are seeking anything but good medical help, but the other Dr. may not see it that way.

Make sure to take a list of all your meds, you current Dr's , your questions and concerns and any test results you have on hand. They should ask you all about family history and things like that and should do additional blood tests and x-rays if needed.

Best to you!
Retired Mom

antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 8/19/2010 1:08 PM (GMT -7)   
Hi Heather,

I so understand what you are going through and I am hoping that all goes well for you! I hate going to new doctors! My PCP is wonderful and does whatever she can to help but there is only so much she can do! I had to go to my first Rheumy appt a month ago and felt like I was just treated like an idiot! Long story short after 2 very high positive RA tests and every joint in my body killing me except for when I am on steroids.....he could not feel any damage in my joints so he would not make the dx and begin meds! Basically, he just put me on steroids for a month and said let's see what happens! I felt like all he cared about was that vacation he was going on and I did not matter! I understand that he deserves a vacation but he was just very condescending and he just left me hanging....hurting....and miserable for this past month! He returns from vacation Sunday and I am supposed to stop the steroids and wait for a flare and then go see him again during the flare! That sounds like fun....driving 3 1/2 hours while in a flare! Anyway....enough about me!!!

I so hope for you that this new doc is wonderful and gets you the help you need! It seems like the "not" knowing is almost as bad as a dx of RA! I will be thinking about you and hoping for the best! Please let us know how it goes!

Take care of you!
Beckey
Spinal Stenosis L3/L4, L4/L5 & L5/S1 with Nerve Impingement, Fibromyalgia, TMJ, GERD, Severe Depression, VERY Large Cyst Right Ovary causing mild twisting, Small Cysts Left Ovary & 3 Large Cysts Uterus and Possible RA

Medications - MS-Contin, Cymbalta, Famotidine and currently Prednisone

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13476
   Posted 8/19/2010 2:06 PM (GMT -7)   
Golitho gave you some excellent advice as the others did. I have been to 2 rheummies and both times my initials went the same. Checked me out, went over my history, did labs and ordered xrays. I was put on medication on my next appt after labs were sent to him. Both appts were one hour long, even with the crappy one. I would not go into much detail about the other dr, except to say you are seeking a 2nd opinion. They hear stories all day long from various patients about different drs and I think its best to keep it at a minimum on that subject. If you notice if a dr ever disagrees with another one, they say little.

Good luck on your appt and I hope it goes well. Susie

mama6
Regular Member


Date Joined Jul 2010
Total Posts : 416
   Posted 8/19/2010 2:59 PM (GMT -7)   
Retired mom,
That was my initial feeling as well. Everything in me wants to say I'm here because the other one wouldn't listen to me are give a you know what as to what was going on with me. My common sense side,though, says that can't go pretty and besides it may make it look like I am fishing. I don't want anything to come back positive, I just want someone to check and make sure they are not missing something considering all of what is going on, and how it seems to have progressed. Great advice, thankyou. Heather
Big Hugs, Mama6

DX. with Fibromyalgia, Narcolepsy, Poss. RA or Psoratic Arthritis, Herniated disc 3x in last 7 months
Meds: Nuvigl, Cymbalta, Tramadol

Mother to 5 wonderfull kids. Oldest is 18 and just left the nest for animation school. Youngest just started 2nd grade. So I am crazy, and feeling my age plus some.

mama6
Regular Member


Date Joined Jul 2010
Total Posts : 416
   Posted 8/19/2010 3:08 PM (GMT -7)   
Beckey,
Wow, I am so sorry for your experience. That is so similiar to my story. I know how you feel so much. It is so frustrating isn't it? The last time I went in, I honestly left crying. This was when we were going to get the results of the test that the RN had ordered and I had to see the Rhuemy. My husband took off from work to go be my support just in case it wasn't good. My dr. was so condisending and blew the positive results off. Didn't even want to discuss it or anything. I was so mad and frustrated. I know that plays a big role in how nervous I am to go to this appointment. Thank you for telling me your story, sadly that means I am not alone in this. I don't understand why they go to school so long to be a specialist if they have that non-caring attitude.
I so hope that you can get through to this Rhuemy and that having to be on the steroids will pay off for you. I hope that means he will listen to you and do something to help your pain. Big Gentle Hugs sent to you. I will hope for the best for you as well!! Heather
Big Hugs, Mama6

DX. with Fibromyalgia, Narcolepsy, Poss. RA or Psoratic Arthritis, Herniated disc 3x in last 7 months
Meds: Nuvigl, Cymbalta, Tramadol

Mother to 5 wonderfull kids. Oldest is 18 and just left the nest for animation school. Youngest just started 2nd grade. So I am crazy, and feeling my age plus some.

mama6
Regular Member


Date Joined Jul 2010
Total Posts : 416
   Posted 8/19/2010 3:25 PM (GMT -7)   
Susie,
Yes both golitho and you had good suggestions for that initial visit. I really thought talking about the dr. wasn't a good idea, but wondered how much to go in to if he asked. I will take the advice and simply say I have had increasing pain, and stiffness that last all day. I am interested in a second opinion to see what could be going on. I think that should sum it up,right? I know it will be alright I just don't want the brush off again, it is so frustarting and makes me feel like an idiot. I know something is wrong. It may not even be what I think, but I know it is something. I just need their help to figure it out. Thank you for your help, Heather
Big Hugs, Mama6

DX. with Fibromyalgia, Narcolepsy, Poss. RA or Psoratic Arthritis, Herniated disc 3x in last 7 months
Meds: Nuvigl, Cymbalta, Tramadol

Mother to 5 wonderfull kids. Oldest is 18 and just left the nest for animation school. Youngest just started 2nd grade. So I am crazy, and feeling my age plus some.

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 8/19/2010 7:31 PM (GMT -7)   
Its so frustrating for you, I can hear it in your tone. But yes, I'd not tell about your first experience at all. Just say you're there for that second opinion if he asks. If not say nothing at all. Start fresh and positive and we'll keep our fingers crossed you get some answers.
If he doesn't think its RA Or sero negative arthritis try to ask what he thinks it is? Why are your symptoms worsening etc. Especially if you get morning stiffness, that is a big pointer that your synovial fluid is leaking from the joints at night and causing inflammation, the length of time it takes for that stiffness to go is a huge pointer to your treatment. If its over an hour, I know it means your disease is out of control. I was only ever stiff for half an hour but it still was a big diagnostic aid for my rheumy. Hope that helps.

Best of luck Heather, golitho

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13476
   Posted 8/20/2010 9:22 AM (GMT -7)   
Mama6 it is always bad to have our bodies getting out of sync and then not knowing what is going on is so frustrating.But, I can tell you drs are very cautious about labeling a patient with an auto-immune disease until they are positive because of insurance reasons for one thing. Until a new health care reform is put in place we are at the mercy of private insurance companies. As it is right now I have Medicare and then a private ins co for my secondary that I have been with for years long before Medicare. If I were to lose this private insurance for some reason because I have auto-immune diseases no other company will insure me unless I go to a high risk pool and then I could not afford the payments.

But lets try to be positive and hope for a good fresh start with this dr and see what he has to say. It is really a good idea to write down all of your symptoms, meds you have tried and ones you are currently on and take it with you to the appt. It is disgusting that we don't have better drs than what we do. But, one thing about it, we do have the right to pursue seeking good care and we many times have to try several to find that right one. We all know all drs are not created equal by a long shot. Take care and hope it works for you. Susie

mama6
Regular Member


Date Joined Jul 2010
Total Posts : 416
   Posted 8/20/2010 1:41 PM (GMT -7)   
Susie,
I agree with you that once they label us it's all over from there as far as the insurance is concerned. Sad but true. I have at the moment a 3,000 dollar deductible per family memeber each year..I guess I figure I should at least get some type of answers for that. I don't even think of it as that cut and dry though...all of us should be able to be seen, dx, and treated without fear that insurance or big brother who has no medical license is going to come along and say nope can't treat them for that, to expensive. Oh well until something changes I guess it's what we deal with. Thank you, Heather
Big Hugs, Mama6

DX. with Fibromyalgia, Narcolepsy, Poss. RA or Psoratic Arthritis, Herniated disc 3x in last 7 months
Meds: Nuvigl, Cymbalta, Tramadol

Mother to 5 wonderfull kids. Oldest is 18 and just left the nest for animation school. Youngest just started 2nd grade. So I am crazy, and feeling my age plus some.
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