Newly diagnosed...but not sure
Dear All -
With a lot of convincing, my mother-in-law finally talked me into joining a support group, I have to admit I was scared, but as i am typing this letter, i feel a huge burden lifting off my shoulders. My story is similar to everyone elses, however I have two doctors that have different opinions.
Here is my story....
I was diagnosed with Raynaud's when I was 14, not only did my hands turn purple, white, and red I also got bumps just around my joints on my fingers and toes, they were very painful and it was hard to close my hands together.
As i got older I started having more symptoms I would lose alot of weight all at once, my family thought i was starving myself! But it would just happen, i had extreme fatigue and had achy joints all the time, especially in my ankles and through out my legs. After two months of extreme joint pain about a year ago, my knee finally swelled up. My mom took me to the emergency room and all they said was that my meniscus is degenerating, and i needed to do physical therapy. I did physical therapy and it didn't work.
For about seven months i ignored my knee and my other joints and did not consult a doctor. Finally the pain got so bad that i had probelms walking and doing normal tasks and all these other symptoms came like like pressure on my chest, dark bags under my eyes, losing more weight, extreme fatigue, skin rashes when i go into the sun, and more mouth ulcers just to name a few. My fiance (now husband) and i decided i needed to get blood work done so i went to the doctor and my ANA came back 1:160, speckled... i have no idea what this means honestly. All i know is it is an indication that something rheumatologically wrong, but they aren't sure what it is.
I finally found a rheumatologist and he tapped my knee twice and 60 ccs of fluid came out both times and on the third tap 80 ccs came out. they did lab tests and found calcuim pyrophosphate crystals and tried to diagnose me with CPPD for a few months, but my last knee tap there was no evidence of any crystals. After a horrible experience with this doctor...my parents decided to take me to Southwestern Medical University in Dallas and get a second opinion and also from Mayo Clinic in Minnesota. Both doctors have been wonderful, my doctor at Mayo clinic, said there was a probable diagnoses of celiac disease, but i have to get an endoscopy to prove the diagnoses...this came out negative, he also said i have some type of connective tissue disease however it has not made itself known. My doctor in Dallas agreed with the Mayo doctor that it was a connective tissue disease, but ruled out celiac. I found a new doctor here in austin, where i live and i meet with him last week and he opinion is a little different than these other two doctors... so we will see how that goes, My doctor in dallas put me on hydroxychloroquine and this new doctor wants to put me on methotrexate...but i have my reservations...we will see what happens.
I could not get consumed with everything going on, because at the same time i was planning my wedding. Three months before my wedding my grandmother (mom's) passed away and Nine days before my wedding, my grandmother (dad's) the one who practically raised me and since i came down with these horrible symptoms would light a candle for me every night...had went to heaven. IT was sudden and no one was ready for her passing, i still can't go a day with out crying. She had done so much for us, she had got us our honeymoon and was just the most amazing woman i knew...We tried to cancel the wedding however we were going to lose everything all of our money...so we kept the wedding small and just had a dinner with close friends and family. The day before my wedding i went to the doctor up in dallas and i asked him, "what do i have? i have been like this for a year what is this illness falling into?"...and he finally told me if it is anything it is lupus. So with my grandmother passing and my lupus diagnoses the day before my wedding...i don't know how i make it through the day. All i know is i am trying to be strong and try to look at the good, I am also thankful that I was blessed with my husband (married for three weeks!) that has been so supportive through this whole thing. I know my story is long and i am sorry for that, just had to put all my thoughts together...hope every one is well...and take care
Newly diagnosed...but not sure...too many questions
I would like to thank both of you for replying to my message, I appreciate it so much. Both your words were very sweet and it is nice to have people who understand. You both have wisdom that i hope one day i can have to help others like us.
I try to read postings every day, and the more i read the more questions i have and i need some advice about this chronic illness.
First question is i wonder if my doctor is right...all my blood test come out either normal or borderline but not enough to make a diagnoses, besides my ANA. What should i think?
Secondly, i have all this inflammation in my fingers, toes, knees, elbows, ankles, and sometimes my wrists.
Third, being 24 and hoping to get concieve in the next few years should i get on Methotrexate or keep taking plaquenil? Does plaquenil work?
Fourth does lupus usually start out with joints first and then other organs are affected later on?
Fifth, I haven't had any luck with birthcontrol pills it usually makes me feel so swollen is there any birthcontrol that would work well with the medication i am currently taking?
Sixth, is it normal to be kind of depressed, i feel so alone and it is like i almost distance myself from my friends, and family...it is like there whole viewpoint is you'll be fine...i guess i just want people to not say that any more. but i also don't want people to feel sorry for me..i guess i want the best of both worlds.
Lastly, i have an appointment this friday with my Rheumatologist, what would be some good questions to ask him about this illness...
thanks to sharing...and thanks for listening...i am so grateful for this support group...every morning i look forward to seeing new messages. You all are in my prayers and Take care...