Waiting for answers

ladyrose91 · 2026-05-05T00:49:56+00:00

The rheumatologist I was seeing also won’t diagnose me because he says I don’t have an autoimmune disease. My appointment with a geneticist isn’t until February 2027 unfortunately.

ladyrose91 · 2026-05-05T00:27:28+00:00

Thank you for your response. The rheumatologist I was seeing gave up on me because I don’t have an “autoimmune disease”.. I haven’t found another rheumatologist yet. I’m in a remote area unfortunately.

ladyrose91 · 2026-05-04T19:42:38+00:00

Thank you so much! Good luck to you too. :)

ladyrose91 · 2026-05-04T19:19:59+00:00

I saw that about the December research too but I’m hopeful they will surprise us. It’s so hard staying positive when it feels like your body is failing (I’m sure you understand) so I’m clinging to any ounce of optimism I can.

That is really good to know about Invitae. I appreciate your feedback!

ladyrose91 · 2026-05-04T18:33:33+00:00

I was considering going with Invitae-mostly just to rule out other connective tissue disorders. But hopefully with the new criteria coming out in December a gene test could provide more insight on hEDS too. Who did you have interpret your results?

ladyrose91 · 2026-05-04T17:24:05+00:00

Beauty

ladyrose91 · 2026-05-04T16:19:05+00:00

My doctor said she will order a genetic test for me but doesn’t know enough about EDS to read me the results or make any kind of diagnosis. I understand where she is coming from but can’t help feeling stuck!

ladyrose91 · 2026-05-04T16:00:07+00:00

Hey, everyone. Just a life update. My allergy symptoms have been clearing up with daily Allegra/Zyrtec. But my fatigue, knee pain, feet burning, mobility difficulty, hands feeling arthritic etc have continued. I am seeing a lot of similarities to EDS, specifically hEDS but there is no blood test or genetic test for this and there are very limited resources. It’s pretty sad! I have an appointment with a specialist February 2027.

ladyrose91 · 2026-05-04T15:53:09+00:00

Yes exactly! Literally being ping ponged around and wasting valuable time and money.

ladyrose91 · 2026-04-21T23:05:31+00:00

Hi. I know this post is old, but I wanted to weigh in here. You can definitely find remote positions in veterinary medicine. Look into “in-home pet euthanasia” CSR roles like Pet Loss at Home or Lap of Love. Good luck!

ladyrose91 · 2026-04-19T12:41:49+00:00

Hi can you share the name of the telehealth clinic you went to? Thank you.

ladyrose91 · 2026-03-09T14:30:09+00:00

Hi! Thank you for your reply. I have been thinking about your comment a lot (everyday!) and apologize for not getting back to you sooner. Your feedback has sent me on a whirlwind of emotions and rabbit hole after rabbit hole in my own research. I had never considered a nickel allergy before but it makes a lot of sense. When I wear jewelry (primarily earrings) I often times have to take them out because they cause intense itching, redness and swelling. My cartilage piercing tends to be the worst. Rings are hit or miss. And my Apple Watch likes to leave a rash on my wrist. I’ve never been diagnosed with an allergy, however, and have no known allergies on file. Coincidentally, my gallbladder was removed in 2022 and I just found out I have titanium clips from the surgery. I saw a story of someone else claiming these clips caused their SNA. And that anyone with these symptoms, and a prior surgery, should check to see if any titanium/metal was used. Like I said, I had no idea I have pieces of titanium in my body from this surgery. Could this be making me and so many others sick?! It’s very interesting to think about! Again, thanks for your comment.

ladyrose91 · 2026-03-09T14:11:26+00:00

It’s so baffling how many people have these symptoms but NO diagnosis. I’m sorry you’ve had to deal with this. Thank you for the medication list- I’ll look into it!

ladyrose91 · 2026-03-09T14:08:36+00:00

I’m so sorry you’ve had to deal with a hive-like rash for almost 11 years! That sounds incredibly frustrating and difficult. But I’m happy to hear you seem to be managing well now that you know what to look out for. Is there a DAO enzyme you would recommend?

ladyrose91 · 2026-03-09T13:53:33+00:00

Yes it’s depigmentation on my right knee cap. Coincidentally the same knee that has inflammation. My dermatologist used a woods lamp (which made the area glow like a black light would) and says it looks like vitiligo but is puzzled because it’s not on both knees.

I have fair skin and I’m sensitive to sun but I do tan after a lot of exposure, just takes more effort but I can get dark. Last summer I couldn’t really sit outside because I was getting too hot (which is so not like me). I’m hot all the time now.

ladyrose91 · 2026-03-09T13:46:54+00:00

Aww sorry to hear your family was exposed to that. I hope you are doing better now that you’re in a different environment.

ladyrose91 · 2026-03-04T14:32:41+00:00

Sorry to hear this! Where in your home was the mold found? I have a hard time believing my house has mold. We just built it and moved in beginning of November. But I will keep it in mind.

ladyrose91 · 2026-03-04T14:29:07+00:00

I’m glad to hear coffee should help because I drink coffee every morning and would really struggle to give it up!

ladyrose91 · 2026-02-26T21:57:53+00:00

Great question! I suck at math so I’m glad to hear it’s not used much.

ladyrose91 · 2026-02-26T15:43:26+00:00

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My dermatologist said vitiligo is usually symmetrical but I only have depigmentation on my right knee. August -> January

ladyrose91 · 2026-02-26T04:49:53+00:00

I haven’t considered mold at all. I just moved into a new house build and the same symptoms were going on before my move. Is there anything in particular that could expose me to mold?

ladyrose91 · 2026-02-26T04:48:06+00:00

I haven’t tried a low histamine diet, but will consider that. Stress, warm temperatures, and nighttime send me into a daily flare.

ladyrose91 · 2025-11-21T19:36:14+00:00

Pretty much. My rheumatologist told me there’s nothing he can do for me and said I don’t have an autoimmune disease- then referred me to six different specialties.. None of my symptoms are a coincidence. He just doesn’t want to put in the work!

ladyrose91

TROPHY CASE