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Why, oh why does she keeping saying stuff?


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#1 enjoytheride

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Posted 28 September 2010 - 03:47 PM

My rheumatologist has, at every visit, thrown out a comment that is really offputting. The first visit she told me that nothing can be done for scleroderma and that's why she has never checked herself for it. The next visit she told me I don't have parathyroid disease. The next visit she told me that I only liked my primary doctor because he sent me to an endrocrinologist. The next visit she told me that I shouldn't be looking at this website as I don't have scleroderma even though she has prescribed meds for CREST. This last visit she told me that having Raynaud's affecting the nose is not possible. At this point I finally spat back at her "Well then what is it?" AARRRGHHH- or some similar Charlie Brown expression. I'm playing football with Lucy here- she sets out the ball with her diagnosis then keeps grabbing it back when I go to kick it...

A couple of months ago she sent me for a lung function test. On the follow up visit today, she kept asking me whether I was sure I did it- when I finally convinced her I did, she said I should sue the hospital for medical malpractice and get my money back- aaarrrggghhhhh........ I left her medical assistant calling the hospital for the records.

Switching to another doctor is not possible as there are only two rheumatologists within a couple of hundred miles and the other one is her partner and isn't taking new people. So it's her or no one. My regular doctor is really good but feels unable to deal with the CREST issue.
She sent me off for blood work as she could not find the previous blood work done by the previous rheumatologist in her practice. She also asked for a parathyroid level. From the way she did it I sincerely wonder if her purpose is either to prove that I still have a high parathyroid level and therefore had unnecessary surgery or I don't have CREST after all, as if I didn't receive this diagnosis out of the blue from them in the first place. Personally, although I shrugged it off previously, I wonder if she is crazy- I certainly feel that I have fallen down the rabbit hole every time I see her.

I have been thinking about going to the sclero specialists in San Francisco. The complications are that I need a referral from her and it's at minimum a three day trip which is very expensive for the travel and hotels while there. I'm pretty tapped out after my surgery a couple of weeks ago.

Well, the choice is clear. I either start the unpleasant work to get to the San Francisco specialists or I let it ride. Since I feel pretty tired after my last trip to San Francisco, I know I don't have the gumption at the moment to do that. So I think it will go on the back burner for now.

Sorry for the emotional dump. I'm simply writing this does make me clearer about what I need to to.

#2 Shelley Ensz

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Posted 28 September 2010 - 04:03 PM

Hi Enjoytheride,

Well, she is sure interesting! Maybe you should keep going to her for the sheer entertainment value, alone. <Just kidding!>

One alternative is to find a board-certified internist to have as your primary care doctor. I mean really, as long as she's not seriously diagnosing or treating you in the first place, why do you need a rheumatologist? At various times, I have gone completely without a rheumatologist and my care has been none the worse for it, in fact, sometimes even better because I've been spared some insanity from the ones who don't know anything about scleroderma in the first place.

So, you could consider ditching the rheumatologist in favor of a good internist, and then having the internist refer you to a scleroderma expert. Meet with them, see what you think, and then perhaps you'd want to have them oversee care with either your internist or the hometown rheumatologist.

My personal take on it is that I am better off without any doctor/specialist on my medical team if they are crazy-making. And I've had even more than my fair share of the crazy-making ones. The trick is getting out of their offices fast enough, so that you can get care by doctors who are well-balanced, sensible, and not prone to driving you up the wall. Believe me, they are out there! But some days, even the best ones will have off days and say stupid things, just like we all do. The thing is, it won't be a pattern, so that you feel braced and uncomfortable before and during, and after every single visit.

You don't need to dump the doctor. You can hold her in reserve in case your new plan of attack doesn't work out. Or...whatever works. Sometimes writing it all down shows that it's not really a problem after all, and sometimes it proves that it really is time for us to make a change.
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.

#3 froggy

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Posted 29 September 2010 - 12:39 AM

She indeed sounds nuts... like squirrels are surrounding her, nuts... I think that they HATE when we get our own information because they're made to keep on their toes. Before the internet we were stuck getting information from libraries. By the time we would read things, technology had changed.

I like Shelley's good, yet entertaining advice. I would also print out your findings and highlight the sources. My mother did this, and after a year of suffering, both her primary care doctor and her rheumatologist had to admit that she was right and they began treating her with the proper medication.

Sorry you're stuck, my heart goes out to you. Keep us posted.

Peace and blessings,
~Andrea

#4 Amanda Thorpe

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Posted 29 September 2010 - 08:25 AM

Hello Enjoytheride

Try Shelley's suggestion, you've nothing to loose...except a dctor you find unhelpful.

Take care.
Amanda Thorpe
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#5 enjoytheride

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Posted 29 September 2010 - 12:08 PM

I do trust my regular physician and would happily not go back to this rheumatologist. There are two issues that give me a little problem in that this doctor is in the same group practice as the rheumatologist and he seems to want to defer to the specialists in the practice. The rheumatologist also prescribes the hydroxychloroquine, which is very helpful for me.

I think I will sort of quietly not make any more appointments with her and see if I can sort of slip under the radar with this group. Maybe after awhile my regular doctor, who is an internist, will feel okay with renewing the prescription.

I have now had an echocardiogram and stress test which show some limited problems but, according to the rheumatologist, only a watch sort of thing. If the lung test is ever located and shows no problems, then I can't think I really need the rheumatologist's attention for the moment.

I have been sort of running on fear a bit, thinking that I would miss the chance to get medication to slow the progress of the disease if the chance is out there if I didn't see her every few months. But I don't think that she would know about any newer treatment anyway.

With this website, I stand a chance of hearing about things anyway.

Thank for your input, it gives me some courage.

#6 Snowbird

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Posted 30 September 2010 - 10:05 AM

I agree with the others....oh my, it's time for her to go sailing! What an attitude, there's no cure, so why look??

Don't give up, there's always someone good out there, sometimes we just have to look a little harder to find them!! Maybe when you're up to it and finances work out, the hospital can get you a referral, only a thought...but somehow there must be a better way that can bypass her to get this? Email them, phone and cry or plead nicely if you must, whatever works to get the job done. Might be me, but it's been my experience that if they are no good, they don't refer you to anyone that's good either.

Keep us updated and take care.
Sending good wishes your way!

#7 CraigR

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Posted 30 September 2010 - 02:33 PM

Hmmmmm. The doctor recommends that you not look at this website. What books would she ban?

Craig

#8 maddy08

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Posted 05 October 2010 - 08:45 AM

Hi enjoytheride,

I know exactly what you are going through. Every time I go to my rheumatologist she can tell me nothing. She will ask me how I am and then when I start with my complaints she just looks at me and shakes her head. No advise, no explanations. I do understand that this illness is also confusing for them and they really don't know what to say, but just say something. I have been complaining about the itching I have had since I got sick, and all she says to me is that we have been struggling with that for a long time. Yes I know that, but what can we do about it. It feels to me that I pay a huge amount for a repeat script, because that is all I get out of her.

But then again she is very nice and sympathetic and must be doing something right, because I never got anything worse than the tightening of the skin and some painful muscles.

Good luck.

Maddy

#9 enjoytheride

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Posted 05 October 2010 - 02:54 PM

Thanks Maddy- I feel the same about the cost of refills.
I was wondering about itching too. I had this problem for awhile but it went away. But I wonder if it is related to the itching that happens as a wound heals- sort of a response to re-vascularization. Sclero does cause problems with the vascular system- maybe the body trying to repair itself like a wound causes this kind of itching. Just an idle thought that really doesn't lead me to an answer. I hope you find an answer to that because it can be maddening.

#10 Amanda Thorpe

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Posted 06 October 2010 - 03:45 AM

Hello Maddy

We have information about itching that you may find helpful.

At the beginning of my illness the itching was bad and drove me crazy, it started prior to a diagnosis which didn't help. I was prescribed hydroxyzine and a low dose steroid prednisilone (5mg to 7.5mg) and it did help.

Itching can be caused by liver problems so I assume that you have confirmed with your doctor that it is related to the scleroderma?

Take care and keep posting.
Amanda Thorpe
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#11 froggy

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Posted 07 October 2010 - 03:13 AM

I have intense, maddening itching. I have read several posts on here, and elsewhere, and it would appear that very few rheumatologists even acknowledge that this is a problem that they're aware of. I was tested last year, about 2 months after having the twins, for liver function. It was the OBGYN specialist who ordered the test. He said that there's a condition involving the liver that women can get after childbirth. When that test came back clean, everyone else just said to take Benadryl.

Like you 'Ride, my rheumatologist is very nice (I do love her), but when I mentioned the burning and itching she had the same reaction as your doctor. (I am so psychosomatic driven... I'm itching like mad while talking about this! =) ).

At any rate, I do get more information here, than "out there" among the professionals. Craig, that is very funny, and so spot on!

Peace and blessings,

~ Andrea

#12 Jeannie McClelland

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Posted 08 October 2010 - 11:01 AM

I'm chiming in late. One thing I can offer is the suggestion to check with the hospital and see if they have any agreement with nearby hotel/motel discounted patient rates. When I go see my rheumatologist, I drive right past a motel that advertises lower rates for hospital patients. And you can always ask to speak (even by phone when making a reservation) to the Manager on Duty and see if they'll give you a preferential rate.

Also, don't forget that travel and accommodations related to medical care are tax-deductible.

That Sour Sally you see is sure a pill!
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