Hello all, I am new here. I just wanted to post about what's going on with me. I have a PCP appointment Tuesday and I am calling first thing tomorrow morning for an appointment with a rheumatologist.
I went to the ER Thursday after a lot of odd symptoms. I've had random fevers off and on for months now, and just recently started experiencing pain and swelling in the joints in my hands and wrists, plus a cough I've had on and off for a while. I developed a rad, spotty rash on my lower legs, I've experienced hairloss over the last year or so, swelling in the ankles and serious fatigue. The ER doc suggested I may be suffering from an autoimmune disease and ran some blood work.
I got a call with the results Friday. High sed rate and CRNP. Negative Rheumatoid Factor but positive ANA, 1160 nucleolar pattern 1:160. Some other tests were being ran as of Friday from there, including a sjogren's panel, and a lot of other things I'm not terribly familiar with. I read a nucleolar pattern is often indicative of scleroderma but I don't really have any of those symptoms. I should mention a positive family history for Lupus (my aunt) and in researching, my symptoms seem to match Lupus a lot more than scleroderma.
Anyway, just wanted to introduce myself and ask if anyone wants to weigh in. I do have the appointments and I have heard many good things about this rheumy (I work in a hospital and he came personally recommended). Thank you for listening and having a board like this to discuss.
I should also mention I am a 29 year old woman, overweight (which is what I attributed so many of my symptoms to for so long), headaches, blood pressure creeping up and a history of UTI's and kidney infections - when I was pregnant in 2006 I needed to be on Keflex my entire pregnancy and have had infections since then.
Bump - C3 and C4 came back in normal range, although the C4 is borderline (it's 16 which is the very lowest it can be and be considered "normal"). Awaiting Anti Sm/RNP and DNA Ab (DS) results, as well as Sjogren's panel.
a titre of 1:160 is not very high and many Rheumy's don't consider it indicative of connective tissue disease in the absence of symptoms. However, a nucleolar pattern can sometimes elicit further testing for specific antibodies such as Anti-Scl-70 as well as others. The nucleolar pattern is seen in scleroderma, lupus and maybe a couple of others. Good luck, and I hope you start feeling better soon! Let us know how your appointment went.
I know it's not a terribly high number but it still is positive, and given the fact that I have many symptoms plus the high sed rate and CRP, I think it's safe to say *something* is not right My appointment with the rheumy isn't until August 10th, but hopefully we can make it sooner when I see the PCP this afternoon.
Rheumy appointments take forever to get! I had to wait 3 months initially as well! I would ask about that CCP test, in addition to the high inflammation tests. In fact, I advise that you make a list of questions and keep a list of your symptoms. Narrow the list of questions to your top 3 or 4 and take it with you to your appointments, especially the one with the Rheumy. Wishing you well and keep us posted.
That's a good idea. I am also making my mother come along because I tend to be reserved at the doctor's (and I work in healthcare and have doctor friends, you'd think I would be comfortable around them!) and she has no problem talking, and is very familiar with my health issues.
What gets me is that I attributed so many things just to my weight but now that I have these positive tests, I'm starting to look at everything and realize there is definitely something else going on. This is only the second time seeing this PCP and I hope he takes a pro-active approach and isn't wishy-washy about things. Thanks again, I'll update after my appointment today!
The following user gives a hug of support to astralweeks: luca689 (05-15-2012)
Hello and welcome on board!
I would be also concern if I would have such symptoms especially for such a long time. May I ask why would you go to ER but wouldn't check with your GP since symptoms occur? I am not a Dr but believe this all these may be pretty serious.
While the symptoms may relate to auto-immune disease, it still can be a lot more than just that. You need to see a good specialist to determent what this all about.
Being a person with poor health, I may say that everything has to be taken care about, your body tells you something and you must react by taking care of it.
I saw a Rheumy today. Basically he said he isn't comfortable diagnosing just yet beyond connective tissue disease, but he ordered a TON of blood work to start narrowing it down. I developed another rash, this time on my arms, so he saw that. I voiced my concern about scleroderma just because it's so scary to me and the pattern was nucleolar on the ANA. He assured me that in the earlier stages of a disease, the pattern may appear one was but develop more as it progresses. He did order a Anti-SCL-70 test and I know it is scleroderma-specific.
So far, sed rate is still high, and I have low BUN and Albumin. I'll know more results soon, and hopefully we can pin down what exactly is wrong with me. He also mentioned Stills Disease as a possibility? Never even heard of that one. Thanks everyone for your tips and support!
this is the first step; I am glad you have a good doctor who will work with you on diagnoses. Unfortunately not every auto-immune disease easy to diagnose, and maybe it's not an AU at all!
I hope pretty soon you will find out about the Monster and will start treating yourself.
Sweetie, my close to me neighbor was diagnosed with Scleroderma at age 19 and couldn't have kids since pregnancy makes it really worse.
Do you know how it started with her? Tiny little bloody "stars" like on the inside of her hand, this was it. It wasn't many, just about 10 all together. Her Doctors didn't think much of it, but when she went to see her gynecoloigist in NYC, he paid attention to it an ordered blood. From first blood work, test came positive for Scleroderma.
I agree with you, nothing to be happy about. All of them not fun, but this one is really scary. Poor people, my heart goes out to them.
i hope you will be OK and please let me know when results will be in.
thank you in advance
I do have scleroderma and I know what you are going through. LOL, when I was going thru the diagnostic process I remember thinking, wow, it would surely suck to have That one. There is another test a Rheumatologist can do to help in diagnosis. If you have Raynaud's they can perform a nailfold capillary test. But I am glad that your Dr is taking you seriously
and saw you quickly.
I'm glad you got in with the Rheumy and are getting some answers! It can take a while to narrow things down and typically autoimmune diseases come in packs, not alone, so it may be more than one thing (I seem to get a new diagnosis every year and I'm continually finding out how interconnected all of my issues are - we are a delicately balanced machine and when our body starts attacking itself, it doesn't usually just affect one system).
Always take a list of things you want to discuss with the doc to your appointments and take good notes while you're there and stay on top of it. I would start a symptom journal and a folder for medical files (I like to keep my own records, as we move a lot with the military and I am always having to switch doctors - not good for continuity of care ). You may be the only one who has the overall picture of your health situation, so be your own health advocate.
Hi!! This is my very first post-cross your fingers that I can do it!! I totally believe in self-advocacy. Request your own hard-copies of every diagnostic test/lab/mri, etc. Keep in 3-ring binder for continued references of improvement and manageability. Better than jotting results on scraps of paper when results/med changes are discussed on the phone. I, too, keep copies of all medical records; this assists your growing team of doctor's manage your care. My Neuro dictates results/appt progress - this is sent to all dr's I request to receive. However, keep your spirit and continue your quest. Answers/diagnoses will appear as the jigsaw puzzle slowly takes shape. Good luck!
The Following User Says Thank You to MStified For This Useful Post: Gennel (08-17-2012)
You are very lucky in some ways. You are presenting with classic signs of autoimmune disease and the ER doc deserves applause for checking all he/she did to get you started on diagnostic track. Some people search for years without anyone even ordering the right tests. Lupus is far more common than scleroderma so that is in your favor. A skin biopsy of the rash can also be helpful in narrowing down the diagnosis. In the meantime, please stay out of the sun. It can greatly exaccerbate the symptoms. There is also a new test for lupus called AVISE-SLE that is more specific and sensitive than the ANA. If your rheum has that test available, it may be helpful. I know this is all scary, but you are right on track getting answers much faster than most of us did. I 100% agree with getting copies of all your tests results and keeping in a notebook for future reference and future consults. Good luck and keep us posted on your progress. It is certainly possible to live well and get symptoms under control once started on treatment, and finding what works for you. Try to stay positive and once narrowed down, you'll find a support group very helpful in learning and sharing with others who have the same issues.
Thanks for all of your replies. I figured I'd update as I saw the rheumatologist for my follow-up yesterday.
As I suspected, not a ton was revealed but there was something interesting. I did tell him the pain in my hands has probably gotten a little worse. I'm on stronger anti-inflammatory medicine for that. I had a fever in June but none in July, and no rashes, so that is all good news. Besides that though, little has changed for me. The fatigue is bad lately, coupled with insomnia. I wake up at the 3:00am hour every night and almost never go back to sleep. It's frustrating to say the least.
He mentioned that some of my lab results, combined with my GI issues, have him suspecting Celiac Disease and ordered a bunch of antibodies for that. If it is CD, he still thinks there is another auto-immune thing going on, and he did again mention Lupus is still on the table, and he noticed my Sed rate is still high.
I got some results sent to me this morning. Sed rate is still just as high and the albumin levels that were low last time that was making him think Celiac (combined with my GI issues) is even lower. Still waiting on the CD antibodies to come back though.
It was a good visit but still so many questions. He even apologized to me for not having more definitive answers, but I understand this stuff could take a long time to diagnose. Few things are easy in life, right? I'll be keeping my eye on the test results and guess we'll go from there.