Finally a (sort of) diagnoses

[Gizmo81]

Saw an immunologist who was excellent, after 12 months of ill health and test after test he said he can say I have mild lupus, not full diagnosis but I am responding to Plaquenil, he said if I stay in that then I shouldn’t get any worse which is a relief.

[Lupiknits]

I’m so pleased. This med makes a difference for me

[Hidden]

I too have mild, not full blown Lupus. Did they happen to mention Undifferentiated Connective Tissue Disease? I hate telling people I have UCTD (except this group). This whole thing is hard for anyone to understand, but when you say you have Undifferentiated Connective Tissue Disease, people look at you like your making something up☹️.

[KayHimm in reply to Hidden]

😅

[Hidden in reply to KayHimm]

Isn’t that true Kay? I feel

Like they think I’m a hypochondriac.🙃

[KayHimm in reply to Hidden]

Well, we may be thinking people think a lot of things! Yes, I imagine people wonder if doctors just don’t know what I have or what this diagnosis could possible mean. But we only imagine, and we don’t know. What would people think if we told them we had scleroderma?!

It just occurred to me that we all should say, « Have you ever known anyone with that diagnosis? » Maybe we should just ask if they would like to know more. Hey, why should we have to feel defensive?

Have you seen the HSS patient description for UCTD? Also, my rheumatologist has a short description in a journal if you want to read it.

🐝🦄🐦🐶🐭 We are all our own mix

😍k

[Hidden in reply to KayHimm]

I’d love to read it. Thanks.

You’re right, idk what others think. But, I know my kids keep expecting the same level of activity from me. My Public Affairs calling at church can be very busy and luckily my leaders have been very understanding, yet, I can’t help but feel bad for not pulling my weight the past year. Had a year and a half of remission and it was great, but this past year has been rough.

[KayHimm in reply to Hidden]

I do care what others think 😅. But I them to get it right. Yes, it is so hard to know we can’t perform as we did before.

Go to: UCTD Askanase, Mitnick

UCTD HSS patient hand out

You may see why they think you are more « early lupus. »

😍

[Hidden in reply to KayHimm]

Thank you. Getting ready to run out the door for an appt but I will check them out when I get home, or while I sit under the hair dryer. Thanks Kay. 🙏

[Hidden in reply to KayHimm]

Ok, I Googled both your phrases exactly, but they only brought up all the info I’ve already read🤷🏻‍♀️, except one site that’s asked if your UCTD could be this or that other thing. Mine isn’t anything like the pictures or descriptions of the other things; brittle bones, hairy tongue (? Ick), separating nails from nail beds, etc. But nothing specific came up that directed me to either site you mentioned. But thank you.

[KayHimm in reply to Hidden]

Sorry. Try tying out in full: undifferentiated connective tissue disease, hospital for special surgery

It worked for me.

[Hidden in reply to KayHimm]

Will do, thanks for your patience with me. 😁

[Hidden in reply to KayHimm]

Ok, was at the hair salon when I last replied to you Kay. Was under the dryer but she continued work on me (and I need a lot of work! Believe you me! 🤣) anyway, then the health food store and home. Read through UCTD, hospital for special surgery. Thanks. Basically it said all the same things I’ve read on other pages, except the pregnancy info was new to me. But i’m 61 and went through menopause at 34, so it was interesting but nothing to concern me😉.

Thank you though. I appreciate your thoughtfulness!

[KayHimm in reply to Hidden]

You’re welcome. Glad it was at least consistent. And hope the afternoon at the hair salon was uplifting!

[Hidden in reply to KayHimm]

Ha, ha. Yes, the hair salon is always relaxing. I even fell asleep under the dryer once. 🤪

[M0kers in reply to Hidden]

Give yourself a break there’s no shame in caring for yourself. I get things done just a little slower. Take time to watch the birds, smell the roses

[HedgeEnd in reply to Hidden]

I've got UCTD too and feel exactly the same. People tend to say "if it's undifferentiated that means they don't know what's wrong with you". It is so annoying, most the time I don't tell anyone I have anything wrong with me as they are either over sympathetic and are always asking me if I'm ok (which I really don't like) or they think I am a hypochondriac (which I also don't like!) I find what works best for me is to just keep quiet about it. The trouble is the husband tends to tell people, so most of our mutual friends know! My brain often goes, especially if I've done too much and nearly always in the evening, and my teenage kids love to take the mick, which for me works well, as I do like to see the funny side of things. I find having a laugh at myself makes me feel better about my situation.

[KayHimm in reply to HedgeEnd]

Well, where did they go to medical school?!! Maybe people should go to the English dictionary to learn the definition of « undifferentiated. » 😂

[Gizmo81 in reply to Hidden]

No they didn’t mention it, I’ll google it now, no idea what it is 😂

[M0kers in reply to Hidden]

Be careful around chemicals

[M0kers]

Inflammation is your enemy. Turmeric and other herbs along with diet can be lifesaver

[Paul_Howard Partner LUPUS UK in reply to M0kers]

It is important to discuss any supplements with your doctor before starting them. Turmeric can affect blood sugar regulation, coagulation and potentially interact with hormone-related conditions. It may interact with some medications already being taken. Your doctor can advise you of any possible adverse effects and interactions so that you can make an informed decision.