I am going to the Sansum Clinic on the 23rd for testing. My question is this:
In 1987 when my youngest child was born I was given someone else’s medication by accident. I was in labor and a couple of cm from complete. The nurse gave me the woman in the next rooms’ medication that was supposed to go in her IV bag, straight up in my heplock.
It was Pitocin a labor inducer. Without going into the graphic details I almost died, the baby almost drowned in my blood and I ended up in surgery.
Needless to say I have a thing about medical procedures :-)
Anyway, I started having symptoms of something autoimmune not too long after this happened. Also I had tremendous anxiety and depression.
I feel I have pretty much overcome the anxiety and depression over the years but am wondering if I share this with the Dr. if he is going to give less credence to my symptoms than if I don't.
I have been told by other Dr's that the med I was given wouldn't cause the symptoms that I am having. So I just don't know how much to share. From the things I have been reading it sounds like there are things that can trigger lupus and other autoimmune diseases.
Can any of you give me some advice on how things have gone for you with the Dr's?
I haven't had any major testing done at this point. Only basic things like CBC and electrolytes to make sure that I wasn't out of whack somewhere. Over the years I have had tons of individual complaints (hives, anemia, rashes, joint pain, fatigue, numbness and tingling, muscle weakness) to name a few. I have been tested for these things individually but no one including myself thought they might be related until I saw my OB this year. The woman who does my OB stuff isn't a Dr. she works for a Dr. but she is a CNP and is much more through in my opinion than most of the Dr. I have seen.
Sorry this is so long.
Getting a Lupus Dx can take an act of god sometimes. I've been where you are. I'm 31 and was dx with SLE, RA, Sjorgren's, and Raynaud's. In the last 6 months, they've added Fibro to the mix. In other words, I have the "autoimmune variety pack".
Here's what I've learned so far...
1) Remember that you can fire a Rheumy at any time if you don't feel that you're getting the care you deserve/need. I've heard from a lot of people who "stuck it out" with a doc that didn't listen and approached everything with a "cookie cutter".
2) Before your appt, take some time to write down your history and symptoms as well as any questions you have. This way you can make sure that everything is addressed.
3) Whenever you get bloodwork or any sort of tests done, request a copy be sent to you directly (for your records). Sometimes you'll encounter difficulty with this - I simply say that I want to deliver a copy to another doctor of mine.
4) Log a journal of how you're feeling, particular pains, symptoms, how much sleep, stress, meds, fevers, rashes, etc. My doc loves it when I use the 1-10 scale.
5) Be a responsible party in your own care - ask why your doc is giving you particular meds. Ask about side effects, when you should expect a response, if there are alternative meds/therapies available and why he/she is using this method. (My doc perscribed Procardia for my Raynauds for cold hands/feet - it causes swelling in the ankles/feet. I chose to try cayenne capsules instead - worked just fine!)
6) Develop a good relationship with not only your doc, but also the nurses and front office. You'd be amazed what a difference it can make. I also got my doc's email address - much easier to email him directly when I'm in a pinch and need an answer than playing phone tag and the waiting game.
7) Educate yourself - read up on the diseases. Contact the Arthritis Foundation and the Lupus Foundation - they have a TON Of resources and most of it's free.
Finally, and most importantly, Be Persistent. Sometimes getting the dx requires doing some jumping up and down and hollering. Many of us have gone thru the wringer getting the dx. Sometimes it takes years and lots of frustration. BUT support groups, understanding friends and boards like this can help on the journey.
I have done so much research lately my head feels like it will explode:-)
One more question, with Raynauds does the extremity always turn blue? I get bouts fairly frequently where my fingers and toes get freezing cold but they don't change color much at all. It seems to take forever for them to warm up again. This happens especially if I touch something cold even for a few seconds. Could that be the same thing?
Thanks for your help,
At first my fingers & toes didn't turn blue or white but as the disease progressed, they did. So I just keep my fingers/toes painted red all the time so I don't notice it! LOL
You'll hear in reading that it can also affect your nose and ears - aka extremities. This winter, I had problems with another "extremity" that was rather embarrassing - my nipples got so hard that they hurt and they wouldn't go down despite putting warm packs on them.
My doc wanted to put me on Procardia (which can cause swelling of the feet/ankles) - told him I'd pass on that. Found out that cayenne pepper capsules can do the trick in the winter months - also eating lots of cinnamon - they increase circulation in the blood vessels.
When I told my doc about the "problem", he said "some men find that very sexy". (Jacka** thing to say) So I responded - "how would you like an erection for 3 days?" I HOPE he was just kidding around with me, because I tend to be a joker, but they hurt like the dickens!
Good luck tomorrow and let us know how it goes - make sure to ask him/her when you'll be reviewing your bloodwork with him - as I'm sure they'll take some blood/urine samples for testing.
HA HA!! That was a great response!
The clinic that I am going to is along the lines of the Mayo Clinic. I am tired of messing around. I am so thankful I have good insurance. They told me to be prepared to stay for 2-4 nights. What I understand is that I will have my test results before I leave there. I will probably also be poor. :-)
A Dr. referred me to this place although I heard about it from a friend who is a nurse and ask about it when I saw the Dr.
After I called the clinic I found out you don't have to be referred at all.
They have a website under the clinics name if you want to check it out. Sansum, Santa Barbara,Medical Foundation Clinic
I have only lived in CA for a year and a half so I really felt out-of-the-loop when it came to medical resources here.
I will post how it went when I get home.
Thanks for all your support.
Sorry to butt in, but I was wondering where you found your information on Reynaud's? I've been prescribed Adalot and Diltizan and both of them caused problems for me, and didn't seem to help much either. I have the autoimmune 'variety pack' too. (cute term). Also, I have Irritable Bowl Synd. so the cinnamon would be out. If the cayenne pepper is in capsule form, do you think it would still cause stomach problems? Taking care of a Georgia winter might be easier than a Minnesota winter, but it would be worth a try.
Not a problem at all Ann! I have read just about everything I can get my hands on for "my diseases". I was thinking about ways to increase circulation/blood vessels and had read that cayenne pepper does that - so I mentioned it to my Endocrinologist (who seems to be in the know about everything) who said absolutely!
I have a stomach of steel - spicey foods etc. So I don't know if they would bother you. Try them on a full stomach and see what happens...
Minnesota? You have GOT to be kidding! Move your cold toes down to Key West!
[This message has been edited by scbagrrrl (edited 04-23-2002).]