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Okay, I'm Waaaay Confused


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#1 ErinF

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Posted 18 April 2007 - 11:11 AM

So I today I had my follow-up visit with my primary care physician. She completely disagrees with the specialist in Madison in terms of "waiting and seeing" and wants me to see another rheumatologist. She says she'll agree with him that it's not scleroderma despite the scl 70, but she vehemently disagrees with ignoring the antibodies altogether (the myasthenia gravis tests are not back yet; the myositis was "equivocal"). So basically I have two doctors who take two very different approaches to autoimmunity. My primary care physician wants to treat me now to prevent any further progression into full-blown disease. The rheumatologist says no. I want to believe the rheumatologist, especially so I can get more life insurance at this time, but I also don't want to progress if that's a real risk. Okay, as I said, I'm waaaay more confused than I was and really have absolutely no idea what to do. My husband is for the rheumatologist and wants me to basically forget all this happened and just move on with my life. That's very tempting. AAAGGGGHHH!

Erinf

#2 summer

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Posted 18 April 2007 - 12:14 PM

Hi Erin,
I'd probably get another referral to see another rheumatologist, if not only for your piece of mind. If another rheumatologist says exactly the same thing as the first then I would probably except it, but keep a close eye on any other symptoms that you might get and contact either your family doctor or your specialist.

I know this is all a nuisance, I am going through the same thing, getting different opinions and so forth, but you will know in yourself when you find the right rheumatologist that you are comfortable with. It is easy to forget the whole thing and just get on with your life but if your family doctor is saying one thing and your rheumatologist another it wouldn't hurt to see a second rheumatologist.

I have seen 3 Rheums altogether and you can pick straight away the good ones and the bad ones, I will be seeing another Sclero Doctor today at the hospital where I didn't have a very good experience the other week. I am only seeking another opinion today as my other Rheums just want to wait and see what happens approach. My husband is frustrated with this approach and arranged for me to see this 4th rheumatologist (which will be my last) and after this visit if she says the same as the other 3 I will have to accept it, after all I do live in Australia!!!!

Good luck with whatever you decide Erin, you will be in my thoughts

Kind regards
Celia ;)

#3 Sweet

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Posted 18 April 2007 - 12:34 PM

Hey Erin,

You are in quite the predicament aren't you? If it were me, I would go for another opinion with yet another rheumatologist. And if that were not an option I would go for starting some treatment now, even if it's minimal. I guess I wouldn't want to take the chance.

It of course is ultimately YOUR decision. Please let us know what you choose to do!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 nan

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Posted 18 April 2007 - 12:48 PM

Erin,
I think you ought to try another rheumatologist to get another opinion. I know it is exhausting, but I think it might give you peace of mind. Take care and you are in my thoughts.
Nan

#5 Heidi

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Posted 18 April 2007 - 01:52 PM

Hi Erin,

I am sorry things are so confusing for you. Did your primary care physician tell you what treatment she wants to start? If it is a treatment that directly addresses soe of your current symptoms, that seems reasonable. But if it were a fairly strong treatment like Cellcept, or Cytoxin that have serious risks and side effects, then I probably wouldn't take that approach.

Please do keep us posted and let us know what you decide.

Warm wishes,
Heidi

#6 Shelley Ensz

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Posted 18 April 2007 - 02:43 PM

Hi Erin,

I think you are probably going to have some difficulty just forgetting this ever happened, since it sure won't make any of your symptoms go away. Although, to give it its due, Denial is a wonderful state to live in! It has its own place in coping techniques but it is lots easier used by caregivers -- they don't actually feel the symptoms or pain, which is what makes it so real (or sometimes, surreal) for the patients.

It sounds to me like there is a conflict in your medical team, and I would feel obliged and inclined to side with your primary care physician unless another rheumatologist weighs in with the same advice as the first one. To get a second opinion, you'd have to go to a larger scleroderma center; probably the one in Ann Arbor, given your location and the scarcity of really large scleroderma centers. If your insurance works for that, etc. Or whatever.

Maybe once you are on a treatment program, you could work with the local scleroderma expert. "Wait and see" is very often a valid treatment option for scleroderma, in various stages, but there are many things to weigh in that decision, and your primary care physician must have very good reasons to desire a more aggressive approach than that. In general, I'd naturally tend to side with primary care physician's first, since they see you more often, in different circumstances, that a single visit to a rheumatologist who very probably is not able to comprehend your whole medical history (or even, your whole health history, I.e. they have not seen you in your prime).
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#7 ErinF

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Posted 18 April 2007 - 03:38 PM

Shelley--It's interesting that you said the primary care physician knows me better, because today I was feeling pretty good other than just some allergy stuff and I told her that, and therefore maybe this really isn't anything I should worry about...and she replied, "Um, yeah, and the next time you have one of your "flares" what should I say? You forget what you're like on your bad days. And my preference is not to keep prescribing Medrol packs every time it happens." And she was right.

Her "gut" feeling, she says, is try Plaquenil at the lowest level for a while and see if it helps with the joint and muscle pain and fatigue. She said she's "this close" to just prescribing it, but she would really like a rheumatologist on board. I think I probably will just bite the bullet and get the second opinion. No sense in taking a chance; I owe it to my daughter to make sure I'm as healthy as I can be.

On average, how long does it take to get in to see a scleroderma expert? I'm imagining several months. There's another scleroderma researcher at the Medical College of Wisconsin in Milwaukee, but she's not at a large sclero center, so maybe I should just wait. My primary care physician really wants me to see a female doctor; she think they listen better to female patients.

ErinF

#8 Shelley Ensz

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Posted 18 April 2007 - 04:00 PM

Hi Erin,

You'd really have to call the center and see what the wait is. It is usually several months or longer to get in for a first visit at a scleroderma center, but that can vary an awful lot. There are several female doctors at the Ann Arbor scleroderma center, so you'd have a good choice --

University of Michigan
Dept of Internal Med/Rheum
3918 Taubman Center, Box 0358
1500 E Medical Center Dr
Ann Arbor, MI 48109-0358

Anyway, hope that helps a little bit.

Whatever you do, keep your primary care physician! She sounds like a real gem.



Warm Hugs,

Shelley
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#9 Sheryl

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Posted 19 April 2007 - 12:52 AM

Hi Erin, I waited 6 months to see my scleroderma doctor then since my case looked like only limited I was given to his partner, Dr. Elena Schiopu. The wait to get in to see her is anywhere from 4 to 8 weeks. I am very happy with her. If you have other problems there is a whole team of doctors that see you. I told Vee about the scleroderma experts and she also now goes to U of M she has more physical problems than I so she has seen more of the team. She also still goes to her regular rheumatologist because she has been with him quite some time helps her to decide which road she wants to follow when they have different ideas. Just so that you know. All my scleroderma tests have always come back negative. Maybe because I have never been in a major flare. So if the disease is really active at the time of a visit maybe that is when the SCL70 shows positive.

Sheryl
Strength and Warmth,
Sheryl

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#10 Sheryl

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Posted 19 April 2007 - 03:04 AM

Erin, here is a toll free number for you to call UofM hospital. Ask them to switch you to the rheumatology (scleroderma) dept. 1.888.229.3065
The number straight to the scheduling dept is 1.734.936.9223 I usually ask to talk to Fran if she is in. Or have her call me back if the wait will be awhile. Good luck. If you choose to try Uof M maybe we can meet sometime and get to know each other. I am hoping to see Vee once again on Thursday. Hope this helps. Sheryl
Strength and Warmth,
Sheryl

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#11 Jessica

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Posted 21 April 2007 - 03:48 AM

I agree with everyone else and that you should get a second opinion. Here my symptoms aren't bad at all and I'm getting 3 opinions. I'm only getting the thrid b/c I have great health insurance and I just want to make sure all three doctors agree. Also, I'm a financial consultant and I saw you mentioned life insurance. If I were you and if you are thinking about purchasing it I would definitely get it now while you are healthy! If you develope something along the way (which we all know your chances are very slim) then try to get it your premiums will be much higher and you may not qualify. It is just something to think about...

#12 WestCoast1

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Posted 21 April 2007 - 07:03 AM

ErinF,

I think you are going at this the right way. It is great to take this one step at a time...life insurance than doctors and treatment if needed. Currently I am in a similar boat. I have gone off Plaquenil completely, with the advice of my rheumatologist, to "see what happens". I have never heard of this approach to an illness, but I have to trust that he knows what he is doing. I could also just walk away from this with my abnormal antibodies and other symptoms, I would be happy to, but like you said, there are the "bad" days where there is just no other explanation for how you feel except it is something bad and it NEEDS to be taken care of. So basically I go about my day, treat the symptoms at hand, and do the things that my doctors tell me to. I do hope that one day this will end and I no longer have to see doctors and think about all of this.
*WestCoast*

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