My name is Cassie and I am a 27 year old single mother to an amazing 18 month old daughter.
I have yet to be diagnosed... However Lupus seems to be what the doctors are currently looking at. I have always has many things wrong, but doctors never took the time to piece things together. I have Chrones disease, alopecia areata, joint pain, strange thyroid tests, PCOD and very sever depression and panic attacks. I have seen obgyn's, dermatologist, surgeons, gastro internalist... no one ever thought to look outside the box. Finally a doctor decided to refer me to a Endocrinologist as well as a Rheumatologist. I dont know much about Lupus. I was thinking the best way to get info about this would be to speak to people that have it! Thats what brings me here to you guys!
Im wondering... does this scream Lupus to anyone or do you think they are barking up the wrong tree??
The funny thing about Lupus is that it can be different for different people. For me it's severe joint pain, hypothyroid, intestinal problems, hair loss, dry skin, and a host of other problems that finally led the doctor to test for Lupus. No family history. So to answer your question is it depends. The doctors will need to do some bloodwork then along with the symptoms look at your problems to see if they add up to Lupus. It can take a long time. Some people on here still do not have a diagnosis. It is hard to be patient but that is what you'll have to do. I am not an expert, and I only know what I feel, others that are much more knowledgeable about all the ins and outs will be on here later. I just wanted to stop in and say hello and welcome to the site. Hope you find all the answers you seek! Billie
Originally Posted by Cassie
Welcome to WHL!
Alopecia Areata was the final piece of the puzzle for me that lead to my Systemic Lupus (SLE) diagnosis. And, joint pain and depression are two of the most common of all the sympoms of Lupus. I'm not very knowledgeable about Crohn's, but I do know many of our members here do have this in conjunction with SLE. I think you may be on the right track. I hope we can help you find the answers you need, let's see what some of the other's here have to say.
Thank you so much for your support. It has been a tough journey thus far and Im sure its going to be a long one, but atleast it will be nice to finally know what is going on. I was starting to think the Doctors just thought I was making things up. It is really hard to find people that understand whats going on and how Im feeling. Very happy to have found this site!!
Originally Posted by Cassie
Welcome to the WHL and lovely to have you with us. It's like Hillbillie said it affects us all in different ways as the symptoms are just a never ending story. Well i've had an history of all sorts over the years but it was'nt till 2yrs ago i broke out in a right rash that looked like ringworm, refered to a skin specialist and it got worse and then i was told i had raynauds, then my joints playing up like mad and cramping each morning but to get it proved it's loads of blood tests and because it makes your blood fluctuate so much while being tested, they keep testing till they get the answer they want, i'm just hoping to see my specialist come january i realy do want some answers but i'd say with what your suffering a very stong possibility.
Love Terri xxx
Hi Cassie and welcome to WHL! We are so glad that you have found us. As everyone before has stated this disease is different for all of us but it is a long journey with few answers until the doctors get lucky enough to run the tests on the right day! I know it is frustrating but at least you are here and we will be happy to be a place for you to vent. There are many smart people on this board so welcome aboard and don't forget that you are no longer alone on this journey.
I look forward to getting to know you
Thank you all again for the kind words. Im understanding now what you mean by testing on a good day. I went to get my blood work done to establish "markers" However the doctor then informs me that the steriods I am on to keep the inflammation in my intestine under control will effect the results! Im still waiting to get my appointments book with the specialists I have been referred to. Unfortunately I live in a small town so everything seems to take FOREVER! Although I am in Canada, I cant even imagine any of you living the states and having to pay for things like seeing doctors and specialists. This is crazy!!!
There is my morning rant for the day!
Thanks for listening
Hello and Welcome Cassie;
Yes, we have to pay for everything here in the states and the costs are absolutely devastating to most. Our health care system is absolute madness!!
It sounds as if you, at least, finally have a doctor who wants to find out what is wrong and wants to treat it appropriately.
I am sure that you are not really willing to stop taking your meds so that you establish markers (lol). But, I am so happy to hear that your doctor, at least, understands this phenomenon. Here in the states, we have too many doctors who, when the test results are within normal range due to the treatment, tell their patients that they no longer have the disease and then discontinue treatment!
I am glad that you are here and, as you can see, we are all here to help you in any way that we can and we want you to know that you are not alone!
Peace and Blessings