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What Symptoms Are Most Important To Tell Drs About?

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#1 Patty


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Posted 03 December 2006 - 05:42 AM

I was wondering if anyone knew what sxs should never be put off tell doctors about and what sxs seem to be ok to wait and see. I hate to over load my dr with my sxs but I just dont know whats important and whats not. Is there a list of things we need to know?


If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#2 GocartMoz


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Posted 03 December 2006 - 06:20 AM


I know of no good reason not to tell your dr. about all your symptoms. I know auto immune diseases sometimes create so many different symptoms there is a fear that the dr. may think you are paranoid. If the dr. feels that way, it is time to get a new dr. They are the experts. As such, they should know about all your symptoms. Holding back symptoms could lead to a wrong diagnosis or getting no diagnosis at all. When I started having many different symptoms, I started keeping a list , so I wouldn't forget anything. I truly believe you should tell them everything. Good luck.


#3 janey


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Posted 03 December 2006 - 06:33 AM

When I saw the rheumatologist for the first time, I handed him a written list of symptoms, when each started and how each progressed. Some symptoms had actually come and gone during the 8 months prior. For instance - carpal tunnel occurred in December but by April was gone and replaced with Raynaud's. That was all recorded. After a physical exam and review of my bloodwork, the rheumatologist left the room with my list of symptoms and came back 10 minutes later with my diagnosis. He thanked me for the list and said it helped tremendously in making the diagnosis. He also said there were some symptoms that sounded like something else going on, so with another bloodtest he was able to diagnosis polymyositis as well.

So yes - you should tell the rheumatologist everything symptom - and better yet - write them down. Let us know how it goes.

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Janey Willis
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#4 jlf


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Posted 03 December 2006 - 06:39 AM

Dear Patty,

I would think all symptoms would eventually need addressed. My Rhuem sends me to a specialist for each one - which in itself if frustrating to say the least. It's difficult to get them all on the same page.

The last Rhuem I went to (for 9 years) would not let me discuss more than 2 problems at a time. The new guy - very young is more open minded to dealing with a lot of problems on an individual basis.

Through my 18 years. of scleroderma I have been on many antiinflammatories, which I'm off of because they raise blood pressure. I've been on & off of prednisone more times than I can count - the new Rhuem says not take it because it makes the skin problems worse. I also asked him about some of the other meds I see listed here such as pen D, metheltrexate - he says many doctors put their scleroderma patients on meds to see if it will help, to passify them, or just simply because it's better to try something than do nothing. For myself, I have never wanted a medication that the 'cure was worse than the cause'. I have seen the research about the cytoxin and will ask my hemeatologist about that when I go back to him.

Is any of this making sense? I guess to sum it all up - if you have a problem that is giving consistent problems - address it. Just be sure all MD's know, otherwise you will have problems that arise from conflicting meds. For me, simple is best.

Hope this helps,

#5 Heidi


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Posted 03 December 2006 - 07:04 AM

Hi Patty,

I see my rheumatologist every 6 months and when I go, I take a list titled, "Symptoms/changes since last time". At the top I list anything new, then the rest of the list is categorized by topic....gastrointestinal problems, joint problems, skin issues, etc. Then at the bottom I write down any questions that I want to make sure I ask him. We use that list and go through it together during my appointment. I am sure he thinks some things on the list are more important than others, but since I don't know what is more or less important, I put it all on the list. For example, a few years ago the cartilage in my ears started really hurting. I thought for sure he would minimize or laugh at that particular symptom, but he acted like it was really important. So, you just never know.

Warm wishes,

#6 peanut


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Posted 03 December 2006 - 10:25 AM

I agree with Janey tell them everything. You never know maybe all your symptoms point to a specific problem and if you don't tell your rheumatologist about all of them he/she may dismiss as less than it is because you’re communicating that you have less symptoms than you do. Tell them everything. It’s their job to hear you out.

I love that we all make lists. I started making a list because over the course of a month I forget. I have monthly appointments. Once I walked in and out of an appointment and realized I had none of the answers I needed simply because I forgot.

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#7 Shelley Ensz

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Posted 03 December 2006 - 11:34 AM

For my unsolicited two cents worth, I think it can be worthwhile to ask a doctor their opinion of things rather than assuming they are okay with it. I've had doctors who had a knee-jerk highly negative reaction to any patient with a list. Which is a very sad thing for people with autoimmune disease, who frequently deal with more than the one allotted symptom per office visit.

I encountered a doctor who went totally off her rocker when I presented a one-page printout of a research abstract from the Centers for Disease Control which related directly to my treatment. She said she felt very strongly that no patient should ever consult the Internet, that she should be my sole source of all my medical information. (I don't think she quite knew who she was talking to. :P )

Many years ago, I had one appointment with a doctor who exclaimed that he did not have to look at either me or my records, because my clinic chart was over two inches thick so I obviously had to be a hypochondriac, since nobody could possibly be that sick!

If he had bothered to crack the cover of the chart, he would have seen that I had taken a whole slew of neuro/psych tests in order to rule out psychological factors as causing any or all of my symptoms. That alone could have filled perhaps 1/4" of the chart.

So, we might think that we are well prepared, with our lists carefully made to save them time, our impeccable research from stellar sources neatly reduced to one vital page of relevant and timely information regarding our treatment plan, our sanity verified, and our illness properly documented through dozens of tests and the proper expert consultations....only to encounter a doctor who prefers to deal with just one cold or hangnail at a time, who believes that hypochondriasis is rampant and should be stamped out in all patients before even reading their medical record, or who does not want to be confused by the facts of anyone with complex autoimmune diseases.

I'd recommend asking new medical providers how they feel about lists, whether they will consider Internet information if it is from a reliable source, etc. Otherwise we can be blindsided by unusual reactions, when all we are trying to do is get the proper diagnosis or care for our condition.

I'm of the belief that prioritized and categorized lists can save huge amounts of time in the doctor's office and keep the conversation focused on the most important issues.

I have a fabulous medical team now, that I wouldn't trade for all the world. But even if our primary medical team is terrific, they can still refer us to other specialties, where we can encounter doctors with unusual, or downright backward or very demeaning approaches.

People with scleroderma may be even more likely to encounter such doctors, since systemic scleroderma is very rare, it may present with dozens of unusual symptoms, and it is very poorly understood by most medical providers.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
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