I got into a rheumatologist today!

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Regular Member

Date Joined May 2014
Total Posts : 31
   Posted 5/29/2014 2:25 PM (GMT -6)   
So I got a call today after asking to be referred by my GP, the rheumy had an opening same day and it's the exact Dr. I wanted to see. I'm nervous but ready, it's in an hour and I'm looking forward to it but I'm always very skiddish when it comes to doctors appointments.

I haven't been out in the sun in a couple days so I went and sat out there for a few minutes just so she could have a fresh rash to look at. It's warm here today but there was a nice breeze. I don't know what to expect but I've got my typed list of symptoms and 'history' and a notebook to take things down in. I think I might type a little something up concerning the procedures I've previously had done before I leave. I've got all my pictures downloaded onto my tablet since seeing a small rash on a small phone screen isn't as easy.

I'll post about it on this thread when I get home. I'm assuming the first appointment takes a decent amount of time, the first time I went to an allergist was 5 hours long (granted they tested my back for allergies, thinking of which I really ought to be tested for food allergies).

The most dreadful part about going to the doctor is forgetting about symptoms so hopefully since i have that typed things will go smoothly.


Forum Moderator

Date Joined May 2005
Total Posts : 7673
   Posted 5/29/2014 2:37 PM (GMT -6)   
Hope all goes well!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
"Life is far too important to be taken seriously." - Oscar Wilde

Regular Member

Date Joined May 2014
Total Posts : 31
   Posted 5/29/2014 6:44 PM (GMT -6)   
She was very nice. She ran new tests and a FANA, and discussed how she hates the doctors who run the ANA Direct. Unfortunately I didn't currently have a rash out, but hoping that I can get one by tomorrow's dermatologist appointment, which she said is the next step. She discussed things that could be causing all of my problems separately.

She did some tests on my joints and touched places and asked if they were tender. She had me do some exercises and told me that I am hyper-mobile. She said she is too. Apparently if you put one hand above your head and one below on your back and you can still touch fingers you are hyper-mobile. She also moved my thumbs and touched them to my wrist, another thing not normal. She says much of the population is hyper-mobile and it has been linked to certain ailments but in of itself it is not a bad thing to have. Oddly enough I am very inflexible from the waist down but she says that's okay.

She also ran a test on b12 and a couple other things as well as a urine sample for protein. Apparently my GP ran a double stranded DNA test and it was negative. (I'll have to double check if this was ran when I get the results in the mail). She doesn't really think it's SLE but does think the rash looks cutaneous(showed her pictures) but could be something else. She also doesn't think it's celiac since I've had the biopsy and blood test twice.

In a way it's like i'm saying goodbye to the possibility of lupus but it could very well be something autoimmune still. I'm just wondering what other conditions could possibly cause photo sensitivity and a sun rash (even though cutaneous lupus is still a possibility).

She didn't discuss my stomach problems much, she thinks I should see another GI (the previous one wasn't great). I don't know if I mentioned it but I've lost much of my appetite and I can't eat much without feeling super full.

Back to the drawing board!

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 5/29/2014 10:50 PM (GMT -6)   

I'm glad you were able to get in and see the doctor today. I'm glad that she ordered the test you wanted done, I'm sure you were very disappointed that you didn't get an answer today though.

She's looking at least and didn't blow you off, like some of them do. I looked at your photos too and I have to say I'm not 100% positive it's a lupus rash either. I've had lupus for 26 years now and I'm like her I'm not convinced it's lupus. However, lupus is the disease of 1,000 faces and is SO hard to DX, so please don't get to bummed over it okay. There are other autoimmune issues that may fit you, she'll keep looking to make sure you get the right care.

I think her thinking you do not have celiac is a good thing, I know it's frustrating not knowing what you do have though. The advice to see another GI sounds good too. The fact you're hyper-mobile caught my attention, my daughter has the same condition and she has had a positive ANA of 1:640 and has had since she was like 7, she's now 21. She does fuss a lot about her joints hurting, and can get a rash here and there. However, she's still not been DX'd with lupus.

Well, I wanted to wish you well with this Doctor and encourage you to keep on looking, don't give up. Good luck with your dermatologist appointment. I would suggest that you stop trying to make yourself flare, you really could get yourself in one and then not get out of it. I've been flaring continually for almost 3 years now, NO FUN AT ALL.

Let us know how the dermatologist appointment goes and hang in there Maddie someone is going to figure this out for you.

DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Regular Member

Date Joined May 2014
Total Posts : 31
   Posted 5/31/2014 1:38 PM (GMT -6)   
I wasn't able to go to the dermatologist yesterday because I wasn't feeling well and I didn't have any rashes so I didn't really want to go in and pay for the visit when I just will have to go back in later. I have to wait for all my tests to come back and that could potentially be a month or so, I know I'll have a rash by then (I get one every summer with out fail with out trying to induce it). I'll just get that biopsy done before I follow up with the rheumy.

Time to be patient AND most of all time to try and have a good summer.

My most serious concern right now is that I'm drinking tons of fluids and urinating very little. I am also unable to eat much of what I used to, this was not a gradual process. My stomach did not just shrink over time it happened in one night. I told the rheumy but she just suggested going to a GI and I'm not sure if I'm ready to go back that route, in all honesty at least I'm eating less and so I'll be losing some weight. (i'm slightly overweight)

I've just finished my first week at my first job and my second job starts on Monday. I'll be busy but happy, plus I'll be saving money for my next semester of school. Time to relax :) I appreciate you guys. And I am enjoying my new found hypermobility even though I shouldn't be using it lol, it's so neat! :P

I'm starting to exercise more along with my inability to eat much so hopefully I can shed some pounds this summer and be ready to start school with a clean slate. I'd like to lose 30 lbs but I could probably lose up to 45 without losing too much. I have some bad eating habits so it's kind of a blessing in disguise that all of a sudden i'm not able to eat much (To be very clear I am eating more than enough food to survive, I am not starving myself, I just don't want anyone to worry I'm not eating).

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, March 23, 2018 7:22 AM (GMT -6)
There are a total of 2,943,061 posts in 322,916 threads.
View Active Threads

Who's Online
This forum has 161292 registered members. Please welcome our newest member, Patriciaizzy.
290 Guest(s), 13 Registered Member(s) are currently online.  Details
NicHostetler, TiitFromEstonia, lazyminimoo, Dogdays, Brook58, tonyaraven, Pratoman, Jerry_Delaware, Violele, TroubledTurds, OriolCarol, Szabo246, Supportive Daughter