View Full Version : New and so thankful for the forum!

07-02-2007, 12:44 PM
Hi, I happened across the forum by finding a link while I was researching lupus. It's so incredible to see that so many people are feeling the same way!! My mom was diagnosed with lupus the week following Easter, this year -- only after truly believing she was was going to die Easter Weekend. She has been treated for the past 3 years for liver disease. She has been misdiagnosed with so many other things for a minimum of 10 years and now finds out that she has 2 sisters that also have lupus. Her doctor told her for every blood relative to be tested. So after doing LOTS of research and talking with LOTS of people, I hesitantly went to my family doctor and asked him to do blood work specifically looking for lupus. Because of a positive ANA and the family history he referred me to a rheumatologist -- of course one that has a waiting list and can't see me until September or October because another doctor in the office has left the panel. Suddenly I start noticing symptoms -- is it possible to fear the outcome of the tests enough to make yourself "believe" you have lupus and yet not really have it? Or maybe it's just that several of the syptoms I've had for so long and been used to for so long that I would shrug them off with other excuses? Well, since I have started to feel worse and worse I called around and found another rheumatologist that takes our insurance, that can see me tomorrow (they had a cancelation -- praise God!) so maybe we can put an end to this nonsense?! It will be good to know -- one way or another!

07-02-2007, 01:06 PM
i only joined the site a few days ago and already its helped massively,
sounds like your mam has seriously been thrugh the mill, and that has created a lot of stress on you,
i cant believe it could of taken so long for you to be seen!!!!
thay tell me lupus is not hereditry but it cant be such a coincidence,

you may only be experiencing symptoms through fear, suddenly your noticing every cramp, the sooner you get peace of mind the better.
if you have lupus dont do what i did and wait years before sharing fears with other people and if you are in the clear still stay on because hearing from other ppl will greatly help you in supporting your mother,

good luck and god bless. xxxxxxxxx

07-03-2007, 09:18 AM
He befilledwithjoy :lol: (that, in fact, is what I strive to do on a daily basis)

Lupus is said not to be hereditary, but it is generally believed that it is genetic. Therefore, in family members, something in the genes can predispose other family members to have the disease. Researchers are trying to identify and understand the genetic factors that contribute to Lupus. They hope to discover why certain people get Lupus by identifying these inherited genetic factors.
Your symptoms may not be getting worse, what could be happening is that you are now recognizing what they are and are much more cognizant of their effects on you. By the same token, your stress level may also be aggravating these symptoms. So, essentially, both of your assumptions may be at work here.
I am glad that you are going to be able to see a rheumatologist soon. Please know that the diagnostic process for Lupus can be very lengthy. It may take months or even years for your doctors to piece together the symptoms to diagnose this disease accurately because it is a very complex disease that changes: Symptoms develop slowly sometimes and sometimes they go away only to be replaced with new symptoms. Make sure that you give your doctor a complete, accurate medical history (for example, what health problems you have had and for how long). Doing this is critical to the process of diagnosis. This information, along with a physical examination and the results of laboratory tests, will help your doctor to consider other diseases that may mimic lupus, or to determine if you truly do have Lupus.
In any case, we are here to help in any way that we can, to answer your questions, provide information and to let you know that you are not alone!

Peace and Blessings

07-03-2007, 10:18 AM
Hello Befilledwithjoy,
Im sorry to hear your family has been so widely affected by
Lupus. I have quite a few family members that have symptoms of
Lupus, but Im the only one that has been diagnosed. My aunt made
an appointment with my doctor just yesterday, she has been seeing
doctors for many years, with many diagnoses, none of which have mattered in the long run.
I also have learned of symptoms through research, then noticed
I had those symptoms. In my case I think they were already there
I just didn't realize that those things were problems. Like my hands and feet burning, I just thought that was from washing lots & lots of dishes, mop water, standing or running after kids all day, who knew a disease could cause a burning sensation.
What ever the reason for your symptoms, don't ignore them, even
if they seem silly to even you. I was very surpised to find that things that I lived with everyday, for years, were symptoms.
Like Saysusie said give your doctor a full history, don't leave out
"'the little things". I make lists, so I don't forget things -- if i can
remember to put things on the list in the first place-HA!


07-05-2007, 09:45 AM
Hi BeFilledwithJoy!

Welcome to the Forum! :D I'm really glad that you found us! :D

Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!

Let us know how your Rheumatology appointment goes! I'm really sorry to hear about your mother and your aunts.

Keep well! :)

07-09-2007, 11:27 AM
Thanks for all the responses and advice. It's just great to have somewhere to vent or find others with the same things happening. At times I feel like I'm just making it all up! I went to my new doctor last week, went through the 2 hours of asking questions, being poked, prodded, moved, turned, twisted, and then 6 more viles of blood and pee in a cup, oh yeah, and an x-ray of my back. 4 hours I spent, from reception to walking back to my car. What an experience! He said he couldn't definitely diagnose Lupus yet, we'll see when the test results come back. He said it's possible to have relatives with Lupus, even have a positive ANA and not develope the disease. He also said it's slightly possible to not come up with any other symptoms and later in life all the symptoms of lupus can rear their ugly heads. Nice. In the meantime he said it seems more like I have many of the symptoms of Fibromyalgia. I will go back to see him in September. In the mean time I can talk with my family doc about having a sleep study done, if my insurance will cover it because new doc says it's very costly. Okay, so now it's off to research Fibromyalgia.....

07-10-2007, 10:19 AM
There are many of us here (myself included) who suffer with Lupus AND Fibromyalgia. So, again, you will find that this is the place to be if you need information or answers about either condition :lol:
I am happy that you are researching and learning as much as you can. That will be of great help to you and to how you and your doctor work together!

Peace and Blessings