View Full Version : New Member from Rochester, NY
07-11-2008, 01:35 PM
Hi, my name is Tina and I was diagnosed originally with Polymyositis two years ago. It wasn't until 6 months ago the docs figured out I actually had Lupus. Started having arthritic symptoms in my hands and wrists and more recently terrible rashes in sun exposed areas. This is the worst! All of my other symptoms have been controlled with Imuran (all tests have come back NORMAL), first time since being diagnosed. I was originally on Methotrexate and all that did was make me feel terribly ill! I was just put back on a short stint Prednisone to try to get rid of the rash as well as Palquenil to keep it away. I'm glad I finally have a diagnosis, it took those doctors forever and there's no worse feeling than knowing there is something wrong with you but not what exactly!!!
I am a 38 year old female with three children 18, 17 and 14 and not a very big support group (my Mom and boyfriend is about it and my Mom has Multiple Sclerosis). Hoping to find inspirational stories to keep on the right path to conquering this horrible disease!
07-11-2008, 01:59 PM
Hi Tina, and Welcome!!
You will be very happy you found this site - it is full of informative, kind and funny people who know EXACTLY what you are going through. I also went through the dispicable "diagnosis" roller coaster, and was finally diagnosed in May with Seronegative Lupus. My ANA has always been negative, however, my symptoms - which started more than 8 years ago - have FINALLY been enough to have first my GP, and then a rheumie Dx me with lupus. It is apparently very rare, but I feel its more common than they are willing to believe.
Yes, I agree: There is NOTHING worse than being sick, and having no diagnosis. There has not been any improvement in the lupus diagnostic process in 40 years, according to the LFA. That is unacceptable. I hear of SO MANY people out there with obvious SLE symptomology, who are brushed off, or told "maybe", lets wait and see....wait for what? Kidney failure!! Many here have been through the ringer with this issue, and some here have yet to be "officially" diagnosed. However, anyone is welcome here...which is wonderful.
The majority of us here are women in our 30s and 40s (there are men here too, especially Rob - whos awesome) and are mommies, too. Im glad you found your way to us - to inquire, vent or kick and scream if you have to.
07-11-2008, 02:51 PM
Welcome to the site. This is a great place to meet a lot of folks with Lupus. I was diagnosed fourteen years ago Lupus and Sjogrens. I have also been diagnosed with Celiacs Spru and PA. I just want to welcome you to the site.
07-11-2008, 03:24 PM
Welcome Tina :)
How are you making out on the plaquenil? I take it two pills at night with some yogart. I find that's the best way for me to take it. Sleep through what ever dizzy spells or tummy upset there might be.
I also take arthrotec 75 for the arthritis issues. It cuts the pain in half, but it also causes swelling of the lower legs...sigh. Oh well it does cut the pain.
This is a wonderful site. Glad you found us :)
07-12-2008, 03:52 PM
I would like to thank you all for the wonderful welcome. I belonged to a support group for Polymyositis when that was what they thought I had. These groups are wonderful, it's really nice to know you are not the only fighting a terrible incurable disease. Especially with Lupus which can affect so many people in so many different ways. You never know if some new strange ailment is a flare of the disease or your run of the mill virus. So it's good to compare notes.
I've had two years to accept that I have an autoimmune disease, not until recently which one. It was real hard at first. I woke up one day and hurt all over, like I had been hit by a truck. It continued for a week before I went to my PCP. He suggested it was all in my head, prescribed me an antidepressant but luckily ordered blood work. They called me that evening at home and told me to go straight to the ER. Apparently my CK levels were over 40,000. (The equivilent to running three marathons in a row.) They did a muscle biopsy which they said would tell me for sure if I had Polymyositis. I waited 3 months for those results only for them to tell me it was incunclusive! I was on Methotrexate for a year before I told them I was not taking it anymore, it made me sick for the whole entire day I took it. Not happening. I started out on 90mg of Prednisone as well and had to taper off for over a year.
Ten months after I was in the hospital I had a seizure (also a symptom of Lupus) I had an MRI done which showed "something" to this day they are not sure what it is, some lesion in my frontal paritiel lobe. It hasn't changed since that day. My neuro-oncologist believes it may be inflammation from the Lupus and on the right medication may go away. We'll see, I get MRI's done every three months. I believe because they saw something on the MRI they were focusing on that as the cause of the seizure and didn't give it much thought that it could be Lupus. Then I started having the wrist and hand pain. My Rheumy put me back on Prednisone and the pain went away. He then ordered the ANA which came back borderline for Lupus but with all the symptoms he agreed that that is what I have. The rash was the clincher. God I hate that stupid rash! I used spray on sunscreen and missed a spot on the back of my arm. All I heard until I was put back on the Prednisone was "What's wrong with your arm?". Love that.
What does everyone else out there do about the rash? Everyone feels so sorry for me when I say I can't easily go out into the sun. It is sad but what can you do?
07-12-2008, 04:09 PM
Hey Tina -
I do have the butterfly rash, but do not get some of the terrible rashes that others get. I do know, however, all about the seizure thing. They couldnt figure out why I was having them either. I ALSO have multiple lesiions on my front parietal lobe which they werent sure what they were. They said "Not HIGHLY suggestive of demylating disease" and "could be ischmic lesions" so either something like MS or mini stroke like occurances. That was five years ago, and I have not had another brain MRI since. My seizures were kept under control for a while with Trileptal and Topomax, and then last summer, when I was Symptom Free (woo-hoo!), I weened myself off of them both.
I dont have the seizures bad anymore/often, but I do have petit mal seiures alot, and MANY neuro symptoms (dizziness, vertigo, uncontollable muscle movements, horrible burning pain in my feet, drop foot and balance issues) I also have several spots on my lower half that have NO sensation at all, and some with decreased sensation.
I probably should get another MRI, its been a while. Keep track of your neuro symptoms - they can be serious with lupus, though I think many of us have ALOT of them that the docs dont even acknowelege.
So glad you joined us. You will be amazed at how many symptoms you have in commom with others, that you thought you were crazy over!!
Take care and warm thoughts coming your way -
07-14-2008, 10:42 AM
You've already met some of our family members and have seen how informative, kind and understanding our members are. You've been given good information and advice. I just wanted to pop in to add my "welcome" to the mix and to let you know that there is always someone here to help when you need it!
Peace and Blessings