View Full Version : Not really sure whats wrong with me

05-06-2012, 07:42 AM
Good Morning,
Not really sure if I really belong here but thanks for being here and reading my info. Maybe some will have some insight as I am in between appts right now. I am 38 (almost 39) and female. I have sort of a long history. At the age of 12/13 I was dx with IGA Nephropathy. Two years of prednisone which is not fun in junior high or first year if high school lol. Things seemed stable for years just really had border line high blood pressure always loosing protein. Got pg with my first son at the age of 18 IGA shows had classic toxemia but was due to kidneys. Had my son induced at 32 weeks. Married at 21 next pg at 25 (struggled to get pg) again IGA shows had second son at 32 weeks induced he passed away. Went on to have 3 mc's before seeing fertilty Dr. Clomid and IVF failed. Had 4th MC when my son was in the 9th grade. All MC"S before 14 weeks. Afater last MC started to have extreamly heavy,long and painfull periods. This went on for a few years. Two years ago tried ablation failed 3 months later had a hystorectomy leaving my overies. What led to the hystorectomy was not just the periods I have had right sided hip/groin and low back pain for about 4 years now with this last year getting bad. Some days I seriously can't walk my groin is so painfull. The hip feels like its my bone that hurts not muscles. Its a deep burning kind of pain that is not relieved by position change it wakes me at night at times. I have had this weird looking skin thing on my right side now for god knows how long never really thought about until liltte purple spots started to appear in it. They come and go. Headaches that sometimes require like 6 tylenol to get some relief I often wake up with headaches. I am always tired. Night sweats. waves of nuasea. Severe pain in fingers when cold. The past year randon numbness of toes fingers and heels and lots of tingling. My veins are popping out everywhere really bad on right leg. I have developed a limp. Swollen lymph nodes near right armpit which I didn't mention but will when I go back.

Went back to Dr as the pain is interfering with work and the purple spots are a bit weird. I just went for a hip x ray a lumbar MRI and to dermotology who did a punch biopsy on my side. The paper says reffered for livedo reticularis. They took like 20 vials of blood. I was kinda scard as I go to a major university hospital for care and generally its a waiting game My Dr did all this in the span of my returing appt for pain in two days. She seemd "alarmed". My dad's mom and sister both had lupus what kind im not sure they both have passed. They said they were testing for a bunch of autoimmune disorders. My gut is telling me somethings wrong. From what I gathered from google (I hate it but I cant stop) lupus , vasculitis maybe lypmphoma. I have not heard from my Dr as my teste were done Thursday and Friday. I have an appt with the Dermotologist and Rhuematolgist (pardon spelling) On June 6th for resluts. They then called Friday and said come back on the 17th of this month for follow up with derm to go over resluts and get stiches out but to still keep appt on the 6th. I am freaking out! Thanks so much for reading any insight would really be appricieated.

05-06-2012, 05:52 PM
Hi Tomcatsgirl;
While many of the symptoms that you've described could be attributed to several auto-immune disorders, it is impossible for us to say if Lupus is a possibility. All auto-immune diseases have symptoms that are similar to one another and it is possible to have more than one auto-immune disorder at the same time (overlapping conditions).
I know that waiting for the results can be frightening and frustrating, but without those results, there is just no way of knowing exactly what is causing your symptoms. The diagnostic process is really a process of elimination and it can sometimes take months to a year before a final diagnosis is made. Especially given the fact that there are over 60 auto-immune disorders.
I would suggest that you keep a log of all of your symptoms and when they occur so that you can discuss this with your doctor. When you do get the results of your tests, please let us know what they are and we will do all that we can to explain them to you and to answer your questions. In the meantime, I am glad that you are here and please know that we understand your frustrations and your fears, most of us have been where you are. We are here to help you as much as we can.

Peace and Blessings

05-06-2012, 08:35 PM
Hi Tomcatsgirl,
Welcome to WHL - you are definitely in the right place. As Saysusie told you, there are many AI diseases and many of us have overlaps of several. I always like to say that all of the symptoms are on a menu which is the entire spectrum, and our bodies pick one from column A, two from column B, etc.
You are on the right track with going to a major university hospital for care. It sounds like your docs are on top of it.
Take a deep breath, hang in there, and you will have more answers soon. Meanwhile, feel free to read through old threads, read the stickys at the top of each forum, and ask questions as you think of them. Arm yourself with knowledge before your next appointment.

05-07-2012, 01:31 PM
Thank you SaySusie and Marla for your replys and info. It feels like im grasping for anything at this point. You are right it takes time. I did recieve a call today from a Dr at the derm clinic with preliminary blood resluts but we are playing phone tag at the moment. My regular Dr called also but said if I didn't call by noon to call her back tomorrow and I did not get the message until 1:00. So they have something to say. I forgot to mention that I am a hep c carrier I found this out last year at a routine follow up with my kidney Dr. I have no clue how or where other than my mom passed away in 1981 from Hep C which was not classified at that time but that is what she died from. She was pg with me while she had it. But I'm 38 you would think at some point they would have caught it. I am not a drug user nor have I had a transfusion and my husband and I are very much in love and faithful for almot 19 years. Anyways again thanks for the comments and for being here not to be rude but I hope I don't need this board. I can only imagine how one lives and deals with lupus. I will post news when I get it.

05-07-2012, 11:41 PM
Please don't take this wrong either but we hope you don't need us too! Keep us posted and wwelcome aboard

05-07-2012, 11:45 PM
i hope you do not NEED to be here.
but i do hope you WANT to be here

we allow friends of lupus patients here also.
so i hope you will hang around.