View Full Version : Hi, and some of what's been going on.....

02-26-2010, 03:42 PM
Hi everyone. I just posted in the new member area. I am looking fwd to getting learning and getting to know some of you. Some wierd things have been happening, and late 08-early 09 things were kind of bad.

I have basically had headaches since childhood. As a teenager, I started with the migraines, whhich were mostly around my period. In my mid teen yrs, I would get those mouth sores that were on the linings of my gums and white. back then they were pretty frequent, and my mom took me to the family dentist. I remember him being stumped, but even back then saying something about "autoimmune" but him not knowing and maybe we could go to UCONN for testing but we never did. I had nothing else wrong.

In 2006 I got married to the love of my life. Now I always had headaches, but a month after the wedding, I started getting these NEW kind of headaches. It would be I would WAKE up with like what was worse than a migraine. I can't describe the pain. And I was extremely tired during the headache. My usualy migraines not only did not feel like that, but also were around menstruation time, and not all of these were. I used to worry when one would strike. I started getting bad acne, (I had it when I was younger too) which I STILL HAVE TO THIS DAY. Also, that same yr, (late 2006) I would have days, although usually no more than one and usually around my cycle where I would feel SO TIRED that I could literally fall asleep standing up. Again, this was a new thing. And I would worry about when I would get a day like this, it was NOT NORMAL tiredness, but telling a dr that was pointless, b.c as most of you here probably get, most drs do not listen.

In fall of 08, I started having stomach problems. It started with on and off nausea, some pain, and acid, and these wierd muscle pains around my upper abdomen (those pains were not like a stomach ache, but rather like overexcertaion cept I did not overexcert myself). Then the day after Thanksgiving 08, I was getting out of the shower, when I was hit with the WORST bout of nausea ever. I took a compazine, and waited and waited.....the nausea was bad and chronic for almost 3 months. I also rapidly lost weight and during the worst of it had almost no appetite. Although *knock on wood* my stomach symptoms have improved some, I still have problems. I am down about 30 lbs from when this first started. My appetite is way better, but it can wax and wane.

During the bad stomach episode, I saw my PCP (useless) and a GI (he is better). My PCP did general bloodwork on me (fine). My GI did an endoscopy on me (mild gasttiris and reflux) but not enough to explain the symptoms, then later a gastric emptying study (normal). MY GI however is concerned about the weight loss. Only recently have I began on my own to suspect autoimmune stuff.

It's b/c with even eating almost normal again I don't gain weight like I used to. I also get from time to time unexplained muscle pain for no reason. Then what made me really think autoimmune again is that I have an itchy spot on the bottom of my foot (no rash) and when I googled it, it can m ean something autoimmune too. I just feel something changed/is not right....and I am almost afraid to go to my PCP b.c I know basic blood work I know does not show autoimmune disease.

if you ask for the ANA, are most drs willing to do it? I just don't want to pay a dr copay and them to write me off. Should I just make an appt with a rehumatologish(SP?) on my own? Any advice I can get would be wonderful.



Angel Oliver
02-26-2010, 05:01 PM
Hi Lauren,

Im sorry to read all whats been happening to you,but so glad you found us.If it was me id recommend first you see your doctor for the first assesment then ask him to refer you to see a rheumi and as soon as possible.I hate to think of you there suffering and worrying in silence,when the doctor can certainly help you through this and find out once and for all what the diagnosis is.Call and let us know how you get on.Until then keep posting here.Many members wll come and give you their thoughts and advice soon.You are not alone.Remember that!!


02-26-2010, 09:18 PM
hi lauren,

your story is so similar to so many of ours....we are the ones who have to do the research and identify possible answers to the question"what is happening to my body?"

If you feel like your pcp would brush you off if you asked for an ANA test, then i would not see him....i would look for a GOOD rheumatologist in the area and go there. Your local lupus foundation can help with referrals, and you can use the internet to see how various rheumies are rated by their patients.

To prepare for your next drs. appt., i suggest that you check out the "stickies" on this site = there is some very good information about the different symptoms of auto immune diseases specifically lupus. Also, start yourself a diary/list of the symptoms that you have experienced, and your daily struggles with pain and fatigue....all of this information will help with the diagnostic process. Lupus diagnosis requires meeting criteria that includes lab results and symptoms.

if you would like our help, just let us know and we will help you get throug this frustrating and often frightening diagnostic process.

02-27-2010, 07:50 PM
hey lauren idk but if it were me i'd make an appointment to my OBGYN... with the abdominal pains and stuff.. and other specialists.. but i'd definately see an OBGYN..

good luck
hope you feel better

02-28-2010, 03:06 PM
Hi Lauren,

I would tell your doctor you want an ANA test along with c3,c4, CRP (c reactive protein), etc. If he does not want to do it; I would find another doctor. Unfortunately, like mountain dreamer, we have to do a lot of research on our own and then take it to our doctors. After 4 months of biopsies, I printed out the tests for Lupus and took them to him. Bingo, I was positive. Hang in there and keep us updated.

Take care,


02-28-2010, 08:01 PM
Hi Lauren. Welcome to WHL. Parts of your story sound very familiar to me and I am familiar with the frustration of the incompitence of the doctors. I am sorry to hear you are battling your own personal health war but you have found a place filled with wonderful people who understand what you are experiencing and who can give you an ear to listen, a shoulder to cry on some advice when you want it and friendship that extends into a wonderful surrogate family. I think you should tell your doctor your suspicions and ask for that test. You are your own best health advocate. If your doctor does not respond or take you seriously, fire them and find a new one to work for and with you and to listen to you.