View Full Version : Still trying to put the puzzle pieces together??
10-08-2009, 01:12 PM
Hello, I just wanted to re-introduce myself. I am a male 34 years of age. I am in the Air Force and still trying to find out what is going on. In June of 2008, I got a chest pain which was diagnosed as Pleurisy. It lasted for about two days and then I went to get checked out at the doctors office. That's when they put me on celebrex for the pleurisy. I took it for a few days and then started to feel like I was sick. Made another apt and they said that I was probably having an allergic reaction to the celebrex and told me to just not take it anymore and use motrin. I had a lot of IBS type symptoms for about 2 months straight and then finally got over it. During this time, I was going from doctor to doctor trying to figure out what was going on. I have had tons of blood tests ran and chest x-ray, MRI of head, CT scan of internal organs. The only thing that comes back bad is my White blood count is ranges between 2.1 and 3.7. I have a positive ANA 1:1280 and an SSA of 580. My double stranded DNA is negative and all other test come back within normal limits. The internal medicine doc told me that I have lupus and needed to see a Rheumatologist. I went to the local Rheumy here in town and she said that my case just does not sound like lupus and then gave me a follow up apt and put on the paper that I had Lupus and Sjogren's. My main symptoms that I have noticed over the past 15 months are Back pain along spine every week that can be managed with tylonol. I think I may have a pinched nerve in my neck because I get a little pain in my fingures when I use bad posture at the computer. I have noticed that some of my hair is thinning, but I am 34 now? Feel like I get acid reflux type symptoms a lot. My white blood count is still where it was last year and my ANA is the same. I have also noticed a lot of allergy type symptoms, such as sneezing and blowing nose over the past year than what I ever had my whole life. Last year, I used to get real foggy headed and started using the netti pot and it really helped. I just figure that the brain fog was due to the allergy symptoms. I have never been tested for allergies, I don't have joint pain. I would love to hear what you all think, Should I keep going from doc to doc? Should I just go with the Lupus diagnosis etc? I would like to hear your stories.
Reading your thread reminded me a lot of myself, when I first started trying to figure things out. My opinion would be to stick it out with your rheumy, because your symptoms to me sound similar to lupus.
Lupus is one of many causes that may cause pleurisy. The SS-A titre is positive in 40%-60% of patients with lupus, and sjogren's, but not usually positive in other autoimmune diseases. I guess it is always wise to get a second opinion through other doctors, but i'd definitely hold on to that rheumy. Do you get any other symptoms such as mouth or nose ulcers, butterfly rash, fever, anemia,damaged nails, or loss of appetite. Hair thinning or hair loss can also be a lupus symptom.
Lupus can sometimes take many years to diagnose, and can progress very slowly. There is heaps of info on the net about lupus, and lupus blood abnormalities, that I found more informative than my rheumy.
I hope you find the answers you are looking for, hang in there, and keep a close eye on all your symptoms, document them, and tell your rheumy on your next visit.
10-08-2009, 04:46 PM
hi cool, welcome back. sounds like you have had a busy year searching for what "is happening to you". I agree with Tammy, your symptoms are vey similar to those that many of us have. Most of us have had bouts with pleurisy. Also, the Sjorgren's can be the reason for the increased nose blowing. If you have confidence in your rheumy, you might want to go back for another visit and just see what he/she can add to your last appointment. Hange around here at whl, so many of your questions can be answered here. It was from reading members stories that i was able to expedite my diagnosis, and contribute to treatment choices.
10-08-2009, 04:49 PM
I have noticed a little thinning of my hair over the past year. I am not sure what the ulcers are suppose to look or feel like in my mouth. I am just at a loss as to what to do next. Did you have joint pain to start out with? I have never had any of that. I think the main thing for me is just the IBS type symptoms and feeling like I have a pinched nerve somewhere in my neck. My rheumy does not seem to be that great. She just said that it was up to me if I wanted to start on the plaquenil, or we could just wait and see. I feel like she is the one who went to school for this stuff. She should know what I need to do. She said that if I do have lupus, that it is just a very mild case and that usually with guys it would start messing with organs within 5 years. So I just wonder what I should do next?
10-08-2009, 05:32 PM
Hey, Cool, I can sorta speak from experience in that, don't believe everything you hear!!! I was diagnosed many years ago with discoid lupus, JUST SKIN, no big deal, right? Maybe, if I had stayed on the plaquenil, I wouldn't be where I am now?!?!?! Honestly, if she's offering to put you on plaquenil, what can it hurt to try it? If it makes you feel better, then it's the right thing, if not, well??? It is the safest medication that I'm aware of if you do indeed have lupus. Someone will certainly correct me if I'm wrong!
Hope you feel better very soon!!!
I can see that this is really stressing you out.
I have not been diagnosed with lupus yet, but my rheumy said that it is only a matter of time. He also gave me the choice of whether or not to start on plaquenil, I was very confused, and told him to write me up the prescription, and so I went home and researched all I could about it. The next day I decided to buy the med. and i've been on it ever since. It has more advantages, than disadvantages, it helps with my joint pain, and there is evidence to show that it might also slow down the progression of lupus.
In answer to your question, I do suffer from joint pain, but that started about a year after all my blood abnormalities. I was first told that I had a positive ANA, a homogeneous titre >640 (lupus), speckled titre >640, centromere titre >640 (scleroderma), elevated ESR, and antiphospholipid syndrome. At the time of receiving these results, I felt fine. I was in huge denial because I figured I should be sick, or atleast feeling something wrong. Not long after, the symptoms slowly began to appear. Even though i'm sick now, and bloods are getting worse, it still doesn't meet the criteria for a diagnosis. So my point is, that in some people this disease can progress very slowly. At the beginning it is normal to feel like there might be a mistake, or what ever it is, might go away. I wish I could say to you that it's probably nothing, but that would be a silly thing to do. So instead my advice to you is to continue seeing your rheumy, read up all you can on lupus so that you have a good understanding of what you might be dealing with, and write down any new symptoms, and be sure to let your rheumy know. There are things that you might not even know are connected to lupus. So get on the net, and research all it's symptoms, so that if you have any, you will know. I first started getting mouth ulcers about 4 years ago. Tiny little things, that sting, but go away pretty quickly. When I found out that lupus was in my blood, then it made sense to me why I kept getting the ulcers. So there may be some things happening to your body that don't seem like a big deal or seem important enough to tell your rheumy, but you would be surprised how many symptoms are connected to lupus. Look, your best outcome here would be that it may not be lupus after all, but you have nothing to lose by learning abit about it, just in-case. Believe me, when I first found out about my autoimmune problems, I thought it was the end. I dove into huge depression. It was the worst year of my whole entire life. I slowly came out of that depression with a lot of help. I then got my self the internet, and read up everything I could find associated with lupus. I have to say, it made me feel a lot better about things. I still get angry from time to time, because there are certain things I can't do. But most the time, i'm living life as best as I can.
Coming here to WHL, helps a lot, so please continue coming here, and asking any questions. I'm wishing you well.
10-10-2009, 04:53 AM
Im so like your symptoms and YES id stick with the Rheumi you have.If it is not Lupus they will eventually let you know.But to me reading your thread,does sound allot like Lupus,but just hang in there and keep reading the posts...how you feeling today?
Love n hugs