View Full Version : Newly diagnosed...but not sure

09-27-2005, 06:42 AM
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

09-30-2005, 06:38 PM
I completely understand how you feel! I'd been going to my rheumatologist since 2001 when my ANA was extremely high and lots of joint pain. Also have had Raynauds forever but didn't know what it was...though everyone had this problem.

I know what you mean about being diagnosed when everything bad seems to be happening. My aunt always said - life is what happens when you're making other plans! I started having seizures in April and have finally gotten that under control. Then started having migraines...currently have lupus of the brain and am undergoing Cytoxan therapy...tomorrow is my third session. Just hang in there...I'm sure both your grandmothers are watching over you...

10-02-2005, 02:52 AM
Hi Meshmesh;
My heart goes out to you having to suffer the loss of your grandparents so close to your wedding and then, being diagnosed with a chronic illness. But, I am so glad that you decided to join us because we want you to know that you are not alone. I say that often and to almost everyone, but I truly, truly mean it and it is important to me that each of us knows that we are all here for each other; to help, to comfort, to understand and to educate.
Congratulations on your wedding and you are indeed blessed to have a husband who is supportive and loving.
I wish you both the very best and I hope that we can also be supportive and caring!!

Peace and Blessings

10-03-2005, 12:19 PM
Dear Ladies,

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...


10-03-2005, 02:15 PM
Mesh mesh

Those are some awsome questions! I am all about asking questions! LOL!

As for how lupus generally starts out, I think it's different for everyone... I didn't have ANY joint pain... Now all of a sudden I'm geeting more aches and pains than I know what to do with!

As for specific medication questions, I'd ask your doctor, because they will know better what will be better for you... Because just because something works well for one doesn't mean it will work well for another... I think that's especially true of this disease.

Since you are having problems with your birth control pills, I would also ask your doctor about having children. It's not something any of us like to think about, but, basically birth control pills make your body think that you are pregnant, so if you are having problems with the pills, there is a possibility that you could have problems during pregnancy... Maybe not, it could just be the specific one you are taking isn't working with you properly, but, it's better to ask and know for sure.

The depression is normal to a point... I think that's pretty subjective too, though... I know that I have GREATLY distanced myself from everyone... But, at this point I think it's a situational thing... But, I'm also pretty stubborn... Is there ANYONE that you feel like you can talk to, that knows you fairly well? Maybe ask what they think.

I understand not wanting people to feel sorry for you, but not wanting them to blow it off either... And, at the same time, you almost wish that they COULD HONESTLY tell you that everything would be okay... It's almost like you want someone to protect you and tell you they won't let anything bad happen to you... But, at the same time, you don't want to be protected, you are still a fuctional human being capable of taking care of yourself... At least, that's how it is for me... Let me know if I'm totally off base...

Anyway, I hope you find the answers to all of your questions!

Let us know how your dr's appt goes!

10-06-2005, 02:43 PM
SoleSinger thank you!

Sorry this reply is late...Yes you were right on the money and thankyou for your sweet reply! after reading so much of this forum lupus affects everyone so differently...it is absolutely fascinating (in a bad way) about how it works!

I am heading to the doctor tomorrow and honestly i am not looking forward to it! I used to get excited (which is kind of weird) about going b/c i thought they would come up with a diagnoses and we will start treatment and everything will be okay! but that hasn't happened...as of right now i am on plaquenil and i wish it could be affective right now but i have only been taking it for less than a month. This doctor would like me to get on methotrexate but i am not sure if i want to take it i am young and still want to have kids...has anyone had any luck with methotrexate?

I also have one more question...does any one ever have an irritated scalp...i feel like there is some type of rash on my scalp is that normal for people with lupus?

well have a good night everyone!!!