View Full Version : New and Incredibly Overwhelmed

02-04-2013, 02:25 PM
Hi Everyone!

Like many of the other posters here, I am newly diagnosed with SLE. I have been sick for about 6 years now and progressively getting worse. I've been wheelchair bound for just over two years with near complete paralysis in my legs. I have been diagnosed with everything from Transverse Myelitis and MS to ALS over the years. The only one that has stuck is Transverse Myelitis (causing my paralysis). About 8 months ago, I was sent to a lyme specialist who has diagnosed me with Lyme disease. I've been on high-dose antibiotics since then with IV antibiotics through a central line for the last three months or so. After minimal improvement (and blood clots, a heart attack, painful breathing, increasing extreme fatigue, muscle and joint pain, kidney issues and the ongoing neurological problems), my lyme doc sent me to a lupus specialist who says I have SLE (and lyme)! She wants to start me on Cyclophosphamide next week. I'm only 28 and want to have children some day! Plus with all the various diagnosis that I have been given (and then un-given) over the years, I'm hesitant to take the new medicine. There seems to be so much information out there, that I'm having a hard time figuring out where to start. I'm just overwhelmed....


02-04-2013, 10:26 PM
hi kt,
welcome to whl.
it always hurts the heart when i hear some of the long arduous journeys some of us have had to endure,

i am not a doctor, but i have tried to learn a little about my health isses.
i believe many of your complaints are possably linked, as they are auto immune problems.
your immune system is in overdrive.
hopefully one of your doctors will be able to treat your whole system (usually the rhuematologist).
it is not uncommon for someone with 1 auto immune disorder to also have others show up at a later stage.

the drug being offered to you is a common drug used to treat many different ailments.
in lupus it is usually only used when your lupus is very active.
yes it is a powerful drug.... but if you do not use it, what is the options to you.

i personally believe that we need to treat each case on its own merrit. some of the medications we take are strong and potent. but if we dont take them..... the desease will do more damage.
often it is a tough decission to decide the lesser of two evils.
no-one willingly likes to poison there body.
i only do it because i know that without my medications i would not be here.
my lupus had progressed to a point where i needed aggressive medication to stop its progression.

02-05-2013, 09:13 AM
I too am sorry about what you have had to go through. It happens way too often and it shouldn't have to. Having said that, Steve is right on the money about the meds. I know they sound scary but the alternative is to let the Lupus continue to attack and it needs to get under control. Most of the time those type of drugs are temporary and without them the damage that can be done to your system is far worse than the possibilities of what the meds could do

02-05-2013, 02:43 PM
Hi there KT84, and another "Welcome to WHL" to you. Have they been able to give you a prognosis for the myelitis? I take it the lesion(s) are on the spinal column only? Has the rheumy said anything about maybe the lupus and transverse myelitis are related, or the lyme & myelitis? Hopefully, you get the one under control, the other will respond. I've had multiple AI diagnoses and mis-diagnoses over the last 20+ years, and am quite familiar with thinking "what thuh...??" quite often after consultations... and I no longer ask "what next?"

02-05-2013, 04:13 PM
Hi and Welcome KT84.

I am sorry that you have had such a hard time of things.Please know you are not alone.

Again Welcome :)