Appointment update

[JennaShi]

Hello👋 ,

We’re on our way back home from the appointment. It surprisingly went very well and didn’t have to show her any of my labs or do any convincing, just showed some photos. She agreed that there is definitely something going on, and that usually labs like the ANA go up and down in the beginning. So I am what she would call pre or subclinical autoimmune and labeled as Undifferentiated connective tissue disease the basket term for unsure what yet as the beast has yet to fully reveal itself.

She counted my cardiolipin test as a weak positive.

Thank you all for your support and input, Im grateful to you all. Between you and a little bit of research I was able to share the stuff that was important through email and we had a pretty easy meeting. I still feel like i need to prove myself but I hope that changes in time.

I do have a question about the butterfly rash. About how long does yours last?

We were looking at my skin photos and one of my face popped up and she said that it looks like it but I’m just not sure as I don’t remember if it was due to soap or something I put on my face? I just don’t remember the details.

[Spanielmadlady]

Pleased appointment went well and now you know your rheumatologist is approachable 🙌

[JennaShi in reply to Spanielmadlady]

Such a relief, thank you!

[KayHimm]

It sounds like you had a very good appointment! It makes complete sense that she would give you the UCTD diagnosis. I wondered if the anti-cardiolipin would prove significant.

There is one study that found an association between the anti-phospholipid antibodies and neuropathy. I also have that, and many here do.

Glad you are moving forward.

Xk

[JennaShi in reply to KayHimm]

Thank you Kay! I can't tell you how relieved I am; probably the easiest appointment I've had in a long time. Wow, I never would've put those two together. I will be looking into it more thoroughly. How did you put the two together? Did you end up getting a skin punch biopsy too?

She did mention that she prefers the IgG antibodies over the IgM, not sure why? I briefly looked it up and thought both IgG and IgM were more important than IgA. I'm not even sure yet why there's three but will be looking into this as well.

[KayHimm in reply to JennaShi]

So happy for you that you found a good rheumatologist - and one you are at ease with. That is important!

No, the skin biopsy issue was years ago. I have autonomic neuropathy, and found the association after that was diagnosed. The British lupus expert who discovered the anti-cardiolipin has discussed this association on blogs that people have posted here also.

If you have any more skin rashes, you should see a dermatologist right away even if you have to pay privately. They don’t like to biopsy the face but would likely want to biopsy anywhere else with you if it looks related to connective tissue disease or photosensitivity.

You have been a good advocate for yourself.

Xk

[JennaShi in reply to KayHimm]

I agree and couldn’t be more relieved. That’s really neat, I'm glad you didn’t beed the biopsy, although they numb the area it’s not a pleasant one to go through, but what biopsy is? So glad you found the expert who discovered this information who was looking at people posting about it. I see that there are doctors on here who have the disease but it also comes as a surprise (in a good way) that our posts are looked for research too, but what better way than to learn more by learning from those who deal with it on a daily basis?! It seems even with Rheumatoid Arthritis, there can be other organ involvement. I guess I assumed APS was a cut cut and dry Kind of disease so I’ll be looking through the APS group too, very interesting!

[KayHimm in reply to JennaShi]

No autoimmune diseases are cut and dry 😅

[JennaShi in reply to KayHimm]

Maybe that’s one of the reasons some people have a hard time getting a diagnosis.

[DRunnerchick]

JennaShi- So glad it went well for you. A little bit of research and advocacy in humility goes a long way in approaching someone when you need their expertise and I think you did it! Sometimes you just have to finesse it a bit and give it time. But it does seem that rheumy is looking and trying to be your partner in the journey. Good on you both!!😘🦋💐✨🌟

D🏃🏽‍♀️

[JennaShi in reply to DRunnerchick]

Thank you, I’m starting to get it. I agree about your comment with humility. Sometimes we are wrong and sometimes it takes a little more time for them to see what we see and then decide whether it’s a prt of the problem. This is the third doctor who has said that and I couldn’t be more relieved. 🙌👏🥳

[DRunnerchick in reply to JennaShi]

JennaShi, I speak from years of experience of riding in on my high house- both proudly as a peacock 🦚 (shamefully or should have been) and there were other times where I just, frankly didn’t have the energy to fight anyone about anything but would just let off one last parting shot as sort of a plea (because I had prepared and they were going to write it off as a 5 minute one sided conversation) and if they are worth their salt, you get a shot. If you need to get psyched here’s a song that always works for me. I have a whole playlist 😈🎵🎶💥😘

youtu.be/lZ4UmlFNdSI(Not working as expected?)

D🏃🏽‍♀️

[JennaShi in reply to DRunnerchick]

I hear ya! Not to mention that can’t find the words at the time to be able to speak up and advocate but then reflection brings flooding in thoughts of how to respond 😅. Thank you for the song, I will keep that in mind for the future! Always need a good song to ramp up confidence!

[DRunnerchick in reply to JennaShi]

Exactly! We need to stick together. You may physically go in to an appointment as one, but you have the throng of us at your back. Just remember that! 🍀✨😘

D🏃🏽‍♀️

[JennaShi in reply to DRunnerchick]

Thank you and vice versa! Hugs to you all💜🤗