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Would you return to rheumy?

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Old 09-13-2009, 06:39 PM   #1
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Question Would you return to rheumy?

I'm so confused I don't know where to start. I'll summarize the best I can from the beginning. Was diagnosed with autoimmune hypothyroidism 2/06. Very high sed rate and non-working thyroid. Many symptoms manifested that year to include chest pain, extreme fatique, body aches, joint pain, mouth ulcers, enlarged lymph nodes, and anemia. Was seeing several doctors and tested for lupus, lymphoma, coronary artery disease, etc., etc. All checked out okay eventually and returned to normal, so I attributed it all to thyroid, and everything improved when levels were corrected. ANA was negative and rheumy doubted lupus as a dx, but he diagnosed fibromyalgia and prescribed some kind of med. I didn't take him seriously because I didn't believe I had fibro. So, other than maintaining thyroid meds and appts, I have avoided going back to doctors. Then, this year the chest pain became worse so I returned to the cardiologist. He did a thorough workup, even a heart cath, and heart is perfect. Turned out to be costochondritis. I had this about 5 years ago, three years ago, and this year intense enough to see a cardiologist, and mild cases all in-between. I am thinking that it is autoimmune related at this point and that the cartilage is being attacked in addition to the thyroid. Now I am experiencing a new symptom inverse psoriasis, and read that it tends to be caused from the autoimmune system as well. Part of the initial reason I went to rheumy in 2006 was because of a rash that appeared on my face. It is on my right cheek, right beside my nose. It is still there but hasn't gotten any worse. I still get mouth ulcers a lot, but no more problems with lymph nodes or anemia. So, because several conditions seem autoimmune related, I am scared it is lupus. What does this sound like to you? Should I go back to rheumy? I am so tired of tests, appointments, and the BILLS so I don't know what to do

If you're reading this, thank you for reading my lo-o-ong post!!

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Old 09-13-2009, 06:50 PM   #2
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Re: Would you return to rheumy?

hi ducky.....sorry you are having a bad time. running from doc to doc and test to test is something i am all to familiar with. i don't know if you have lupus but it seems you need a super diagnostician to figure out what is going on. do you live near a research center or large medical center? you might want to start there. gather up all you test results to take with you.

Old 09-14-2009, 05:06 AM   #3
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Re: Would you return to rheumy?

Ducky, hello and welcome! I'm really sorry you've been struggling. If I were in your shoes, I'd revisit a rheumatologist. Because you've already been dx'ed with an autoimmune thryoid condition, I also think it's especially important to look for a highly skilled diagnostician. I finally saw a teaching hospital rheumie and only wish I'd done so years earlier. Dx was a snap for him... after all those specialists I saw locally.

What's "inverse psoriasis"? I'm always curious about rashes. FYI, there are *multiple* lupus-specific rashes beyond the most familiar = malar (facial butterfly) and discoid (scarring). One called "subacute cutaneous lupus erythematosus, papulosquamous form" even resembles psoriasis, to the naked eye, so I was told. My drs. mentioned that one because I had the *other* SCLE rash, the annular (targetlike) type, for many years.

I also had a "discoid" scarring lesion, and *maybe* a widespread "bullous" rash decades earlier. Moral: some people have *multiple* lupus rash types, which I'd never fathomed was possible until I saw high-caliber drs. My local drs. didn't think my rashes were lupus rashes, seemingly because they didn't know about any except discoid and malar.

I think the best diagnostic test for lupus-specific rashes is deep-punch biopsy with immunofluorescent stain tests. These tests often (but not always) can provide confirmation.

FYI, Dr. Daniel Wallace covers all aspects of lupus in his great hardcover, which most libraries have. He also discusses other conditions seen along with lupus (incl. thyroid) and "close cousins" to lupus (RA, MCTD, UCTD, psoriatic arthritis, etc.) His book has a good index; you can zero in quickly.

Obiously I'm just a patient who struggled for answers, so please read the above in that light! I really hope you can cut to the chase. Let us know how you're doing, OK? Meanwhile, sending you my best wishes, sincerely, Vee

Last edited by VeeJ; 09-14-2009 at 05:08 AM. Reason: spelling

Old 09-14-2009, 05:34 AM   #4
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Re: Would you return to rheumy?

I also have autoimmune hypothyroidism and 3 years ago I tested neg for ANA and all other issues... they just gave me some Naproxin for my hip pain and sent me on my way.

Now, here I am, 3 years later, just dx w/ Lupus and I've had a nose sore for 16 years that everyone wrote off, Positive ANA, ANA-DNA, the nose sore, sun sensitivity and pain, finally got dx w/ Lupus.

I'm still in a lot of pain in my right hip now even while on the Prednisone, in fact, it's a bit more than it was before I went to see the dr, but it's only on the one side now, not both *sigh* I have to call my GP and have him order a hip Xray to see what else could be an issue here.

It's a real bummer it takes so long to get DX, but when you finally get it, it seems like justification, you know.. You WERE sick after all! Finally you have a reason to feel like pooh. Go see the Roomie again, see if your bloodwork hasn't changed. Mine had even though my GP said it was "normal" the Roomie said... no, this is a solid positive!

Old 09-14-2009, 06:02 PM   #5
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Re: Would you return to rheumy?

Wow, thanks for all the great info. Lots to think about! I had never heard of a diagnostician, but it would be so nice to have someone look at the whole picture and not just the symptom at hand - that is what I have been wanting but didn't know what it was called.

Vee, inverse psoriasis is where a sore red line develops in skin folds; its sort of like cracked open like the skin is pulling apart.

I will definitely see what I can find out and post updates.

Thanks again

Old 09-14-2009, 08:48 PM   #6
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Re: Would you return to rheumy?

Ducky.....inverse psoriasis......chostochondritis.......ha ve you looked into the possibility of psoriatic arthritis. PsA can present BEFORE the skin symptoms. Blood tests can be negative with this! Sounds more like PsA , you might want to ask the Rheumy about that.


I also have autoimmune hypothyroidism and 3 years ago I tested neg for ANA and all other issues... they just gave me some Naproxin for my hip pain and sent me on my way.
This is exactly at the stage I am at now. I have Hashimotos HypoT, negative ANA. Have tried Naprosyn, Etodolac and Diclofenac Sodium for the hip pain but the Rheumy INSISTS it is only tendinitis even though a bone scan showed arthritis bilaterally in wrists, elbows, shoulders, ankles, knees and HIPS! I have to only hope it doesn't take as long for me to get a diagnosis as it took for you but.......Congratulations to you on finally getting a firm diagnosis.

Last edited by hopalong_too; 09-14-2009 at 08:50 PM.

Old 09-16-2009, 05:55 PM   #7
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Re: Would you return to rheumy?

hopalong, I had never heard of this until I was reading about the psoriasis, and it def caught my attention. I will get an appt with rheumy. Thanks!

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