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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 amberjolie

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Posted 07 December 2009 - 12:44 PM

I've had it up to here with Doctor's appointments! And particularly when I DON'T have any symptoms that would make it practical to see them. Today saw a cardiologist. Why? Don't have palpitations much anymore since getting off the calcium channel blocker, and I've had them for about 20 years, so it's not like slight, random palpitations are new for me. Been tested in high school, this past spring, and in the fall - echocardiograms, ultrasound, holter, everything NORMAL.

So why does this doctor ask me to wear a loop monitor for a week?! I said okay, but now that I'm home I took it off and I'm going to return it and cancel the follow up appointment with him. No point. Don't have any of the symptoms I had in the summer (short of breath, etc), so it was all very likely due to severe stress which I had been feeling at work.

Also thinking of canceling my follow-up exercise and breathing tests in February. Again, don't have the shortness of breath anymore since work calmed down a bit, last test showed I was BETTER than normal, so what's the point?

And now they don't even know if CREST is part of my diagnosis or not. The only thing they're sure of is Sjogren's, which isn't particularly bad on lungs and heart, I don't think.

I'm still going to see the ENT because of the Sjogren's, still going to see the gastroenterologist because of my heartburn, my rheumatologist of course, and THAT'S IT! Also going to cancel my endocrinologist, because really, my bloodwork was great last time for my thyroid, still taking the meds, and was told he can renew my prescription without seeing me.

I just don't have time for all these appointments for tests that came back fine! I can understand if I've got symptoms, or some tests came back inconclusive...

Anyways, that's my rant. Thanks for listening!

#2 Shelley Ensz

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Posted 07 December 2009 - 02:25 PM

Hi Amberjolie,

Well, it sounds like you're frustrated? Okay, more than frustrated.

You do have every right to cancel any appointment you want and to not have any tests you don't want, of course. The doctors aren't going to be bothered by that, a whit. But, before getting too far into cancellations, there are a few things to consider.

One is, why were you at the cardiologist's in the first place, if you aren't having any heart symptoms now? Did you explain to them that you aren't having any bothersome symptoms at the present time? And if so, then why did they launch into doing a week-long monitoring? That doesn't come cheap, you know.

Then, another issue is, if you were referred to the cardiologist by the rheumatologist (which may or may not have been the case), but if you were, then when you see the rheumatologist again, you run the risk of them being unhappy with you being an "uncooperative" or "difficult" patient. I mean, if they recommend something but you don't follow through, that rather ties their hands, you know? Thus, they might conclude they can't help you. Or that you were initially just spoofing them about your symptoms. Then that might send them back to the drawing board again, or they might think twice or three times before referring you to any other specialists or investigating further any other symptoms.

An even more bothersome thing is, what if, someday, you developed something imminently life-threatening and needed a major procedure? For an example let's just say "lung transplant." Did you know that when they review candidates for things like that, they look through all their medical records to see if they are a "compliant" patient -- one who does everything (I mean, really, within reason) that their doctor recommends and that they have both agreed upon? Because they can't risk having a patient who is just not going to go to all the follow-up appointments or take all the prescribed anti-rejection meds, exactly on time, every time. It makes them look really bad when the patient dies, because of that.

So, what I'm saying is, we are certainly all entitled to our fits. Surely, I've had a few myself! And boy, was I ever frustrated by all the confusion over my diagnoses, which seemed to go on forever and a day. But, once you've had a chance to sleep on it, perhaps you could possibly consider modifying your approach, slightly. Confer with your rheumatologist (or primary or whoever) about how you feel about the upcoming tests. See if they agree it is reasonable to skip them, for now. Or not. They might be looking at things that you just aren't aware of right now.

I've successfully argued, on many occasions, for skipping or delaying specialist appointments, and even for changing or discontinuing medications or trying another approach. I do believe some of us get excessive monitoring, while others don't get near enough to be even basically sufficient. So, some of us need to negotiate for more testing, and some of us need to negotiate for a bit less testing.

But generally, the time to negotiate is before the appointment or during the appointment, and not, of course, after we've agreed to something, unless it is terribly invasive or has awful risks that we are just never willing to take.

If you think it over and decide to complete the test, perhaps you can confess to them tomorrow that the unit uh, accidentally, came off and you need to have it resituated. Or tell the doctor you are dismayed, why did you need the test if you have no symptoms?

Think on it. Meanwhile, know that many of us have been there, done that. And I'm sending lots of extra warm hugs your way....no matter how you resolve (or not) these issues.
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 debonair susie

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Posted 08 December 2009 - 06:56 AM

Hi amber,

Hopefully, you have reconsidered your stance, as a result of Shelley's wonderful message.

There are many of us who have felt as you do and it can be difficult reconciling those feelings.
I also hope that you have contacted the cardiologist/rheumatologist so they can be aware of your feelings and , as Shelley also mentioned, find out what their game plan is.

It does get frustrating...I understand that very well. It took four years and countless tests before diagnoses.

Please know that all that Shelley mentioned is great information. It's so important to communicate with your doctors.

You may feel that your doctor visits are fruitless. However, if they have a baseline of information and you see your primary doctor with regular visits, then they can zero in on your health problem(s) much easier.

Let us know how you are doing.
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#4 amberjolie

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Posted 08 December 2009 - 11:29 AM

Hello!

Yes, I understand everything you both are saying. It wasn't the rheumatologist who referred me, it was the pulmonary specialist, and first of all, he was the one who said all my tests were great, and secondly, he didn't even tell me he was referring me to a cardiologist; I just got a letter all of a sudden in the mail, and had to call the cardiologists' office what he was all about, because I didn't have a clue who he was. Thirdly, this was because my initial diagnosis was CREST, but now, the rheumatologist doesn't know if CREST is involved at all or not. All we know for sure is the Sjogren's.

And the cardiologist, after I mentioned all the tests came back fine and I wasn't having any issues anymore, decided that a 24 hour holter didn't give enough information (even though during those 24 hours I had a lot of "symptoms", because that was last spring), and he wanted one for a week. I very rarely get palpitations any more, about the same amount I've had since high school (which was tested back then with no problems either).

I didn't say anything at the appointment because I'm one of those people who don't know how to say no to someone's face. I think I'll call the pulmonary doctor and explain things.

#5 Sharon T

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Posted 08 December 2009 - 12:05 PM

Hi, all -

I've had the same kind of issues with the various tests and procedures and multiple specialists, etc. One of the things I'm trying to do now is set up one of my doctors (probably the rheumatologist) as the primary contact for everything, and then make sure all of the doctors get the results of all tests ordered by any of them. It was starting to drive me crazy not knowing whether any of them knew what the others were doing. Not to mention the number of blood samples I was being asked to give at various appointments - I was pretty sure the next "symptom" would be anemia at the rate they were draining me!

The things I've become aware of as a result of this process are (1) Since everyone seems to have different issues with sclero, the doctors are always kind of shooting in the dark when trying to make sure they catch at an early stage each new emerging problem, and (2) Nobody is as good as YOU at keeping all of them informed, because you are the only one who only cares about you. And I really believe that if my doctors are all up to speed about everything that is going on inside my body, they will be that much more capable of treating me quickly and appropriately. I work full time and a lot of the tests I've had to take in the last 6 months have been at UCLA which is about 2 hours from where I live and work, so its been a pain in the rear to get to them sometimes (and somewhat expensive even with insurance). On the other hand, I'm a lot more confident that I'm being properly cared for, and much less stressed out about how and when this disease is going to progress. I also hope that since I've now had every test known to man (or so it seems sometimes), there shouldn't need to be as many in the future!
Sharon T.

#6 Snowbird

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Posted 09 December 2009 - 11:08 AM

Hi Amberjolie

I agree with the others better to have them pay attention to you than not? Has the potential to pay off later for you if you ever need them.

Also, I'd personally be sure to see a rheumatologist that specializes in scleroderma (then you'll likely get a more definitive answer on the CREST). If yours is not, it may be what's making their decision a little more difficult to put any pieces together/or not as the case may be? These autoimmune things are just a huge puzzle and can be for a very long time until they come together to make sense. Just a thought. :)
Sending good wishes your way!

#7 susieq40

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Posted 09 December 2009 - 04:28 PM

Dear Amberjolie,

I have had so many tests the last few months, I tought the last thing I needed was more tests. But my pulmonologist also sent me to a cardiologist for tests. I was like..ok..my hubby was like..what for?..cause these tests are expensive, even though our insurance pays good. But It was the cardiologist who found out I also had Pulmonary Hypertension along with the Sclero. This diagnosis has been a completely overwhelming. But I know that I need to take care of myself for my family.

I wasn't diagnosed with Sclero until after suffering almost 20 years of other diagnosed diseases. I had reflux early in my life, born without a gallbladder, inflammatory bowel disease since high school, and RA in my 30's. I am only 42, and the only reason we got the Sclero diagnosed was because I started having breathing trouble, and severe fatigue just going up 5 stairs. And there were even signs of having the Interstitial Lung Disease in 2006, but was put off as stress. If they would have caught the disease in 2006 I wouldn't be on Oxygen.

I say do the test to rule stuff out..it's always better to be safe than sorry. I know some tests come back as nothing is wrong, and all this is in your head(attitude of others) but isn't it nice to know when the test comes back and all is ok. This disease is so complex, it's got a lot of complications and differences in symptoms. Anyway, I am thankful to my pulminologist who finally diagnosed me and I am now getting the medication I need, and not just wondering what's next...

I wish you the best with whatever you decide. It can be so frustrating being in between one diagnosis or another. Take care and keep in touch! Hugs

Susieq40

#8 amberjolie

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Posted 13 December 2009 - 05:27 AM

Spoke with the doctor who referred me to the cardiologist (figured I at least have the courtesy to tell him the situation). He of course explained what you all are saying that he wants to have metrics to go by, but was okay with me not doing the loop monitor. I'll still do the breathing tests, though.

#9 smac0719

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Posted 28 December 2009 - 01:40 PM

Hi Amberjolie. I truly feel your frustration with all the doctor appointments. I have been where you are a few times. I have a goiter on my thyroid and after being diagnosed with Sclero, needing to see multiple doctors and always feeleing that I was in a doctors office. On top of that I had "normal" blood tests for the thyroid so I decided to remove one less doctor and stopped going to the endocrinologist thinking my primary could monitor it. Well my primary did, but not to the detail of my endo.

My primary referred me back to the endo when my Vit D dropped again for the 3rd time this year. My endo welcomed me back, but was not hapopy that I'd cut her visits out all together. After a thyroid ultrasound, we found the goiter had grown in the time I hadn't been there. The growth didn't affect my labwork results, but I was surprised and she increased my synthroid immediately.

I realized then that I will need to talk to the doctor and let them tell me their views on the necessity of follow-up visits before I decide to omit them or visit less frequently.

Keep your head up and reach out when it get's overwhelming.
I may have Scleroderma, but Scleroderma doesn't have me!