New to all of this & have some questions
Hello all. All of this is very new to me. A little about myself & what's going on: I am a 30-something mom of 3 great boys ages: 17, 15 & 9. My husband & I have been happily married for almost 19 years now. I am in my last year of graduate school -- working on my PhD in Epidemiology (Infectious disease specialty / statistical methods specialty) & work as a teaching assistant in the Biostatistics department. Unfortunately, chronic diseases are not something I am too familiar with but I have a pretty decent knowledge of the immune system.
Health-wise, I've always been told I have a "weak immune system" and have been hospitalized for encephalomeningitis (once in 2002) meningitis (2 other times 2008 & 2010) with what they termed "aseptic meningitis". I have what was diagnosed as probable neuralgia from the first episode where I get horrible headaches accompanies with disorientation & often get an electric feeling down my spine & into my arms / hands. My only other hospitalization was from mastoiditis when I was pregnant with my youngest (2004). It was really bad & I had to have a PIC line and IV antibiotics for 4 months to recover since it was apparently a rather nasty organism that caused it. So for the last several years I have been trudging on feeling exhausted and quite often experiencing strange occurrences of red blood in my urine without infection & severe joint pain for no apparent reason among other things.
In early May, my Mom became very ill and was in the hospital with heart issues. She had several follow up appointments and along the way was diagnosed with Lupus. She was very worried about my brother or myself having lupus so to put her mind at ease I asked to be tested at my follow up appointment at the end of the month. My primary physician ordered blood tests and discussed my joint issues, fatigue, sun sensitivity, etc. 2 days later I received a call from the Rheumtologist's office with an appointment telling me that I had high levels of RF, vitamin D deficiency and some other things were outside normal range. I was told to start taking vit. D & get some more labs done & the Rheum visit was 2 weeks after my appointment with my primary dr. I had my first Rheum appointment last Thursday. She told me I had high RF, still Vit. D deficient & ANA was pos. We discussed my medical history & she did an exam. She went over my body joint by joint to see where I had pain. She spent about 45 minutes doing the interview / exam part. The week of my Rheum appointment, both my knees were giving me a difficult time with being stiff & painful & my right should was hurting so badly I could not move it without letting out an involuntary yelp. She decided that a steroid shot in my shoulder would help with the pain and it has made a world of difference. She ended the appointment by telling me I have Rheumatoid Arthritis and prescribed prednisone & said I will be starting methotrexate next appointment (in 10 days). She ordered several more blood tests that I can't remember what they all were except another Vit D level, RF, and ANA among several others. She said we would discuss the possibility of lupus at my next appointment.
I have been reading the boards & trying to learn what I can. I really have no idea if she will tell me I have lupus or not when I go back in 10 days. I haven't really told anyone other than my husband and mom about the testing. I am a bit scared though, but am trying not to worry too much. I feel like a I have a Rheum who is pretty thorough when examining and asking questions. At the same time, my mom's Rheum visit isn't for another 2 months & she just has the diagnosis with no treatment plan yet. Mom lives in a different city otherwise I'd take her to see my Rheum. I see many of you have several conditions / AIs at once. Does anyone have RA & lupus? Any advice for future appointments? Any input is welcome. I have been going through the sticky notes at the tops to get tips.
Thank you if you read this. I'm sorry this intro is so long; I am usually a relatively brief writer!
Medicines I currently take are: Depakote 750 mg & nortriptyline 25 mg, B6, B12, Vit C, and now: Vit D & prednisone.
Originally Posted by tgal
Hi! Thank you for taking the time to answer my long post. I take depakote because of what can only be described as electricity running through every nerve in my body, migraines and nerve pain. The nortriptyline is for nerve pain / electric feeling too.
I have not even made the connection to "overactive" immune system instead of a weak one. I guess it was always thought I had a weak immune system because when I would get something like an ear infection it would quickly spiral out of control. I am still learning & unfortunately since I really expected negative results on both the RA (even though had I read about it before testing I would have seen it was a real possibility) & the lupus evaluations. Now, I somewhat expect the lupus diagnosis to come as well. I should probably reconsider all my vitamin C & immune supplements I've been taking. Do any of you take vitamin C? Or any words of wisdom on that subject for me? Thanks again!
Any types of supplements must be discussed with your doctor because Lupus and AI issues attack is all individually are needs are also very individual. What is good for one of us may not be good for another. That is why there are 2 topics not allowed to be discussed here at WHL and those are any kind of natural supplements and special diets. What works for one of us could kill another of us and it is simply not a risk we will take. There are several "sticky's" that will explain with a bit more detail.
ohhh I know those feelings well! They are such a pain in the neck (or wherever they happen to be hitting at the moment lol). I actually think it is a good think that you are not expecting a positive answer. It is one thing to be prepared but you don't need to be in a panic over it. Just know we are here for you as you travel this path... Wherever it may take you
Success is not final, failure is not fatal: it is the courage to continue that counts.
Thank you for all the great info. I had never thought of my immune system being "overactive" vs "weak". I look forward to learning more from you guys. I am usually a very positive person, but am struggling a lot with that this week. Getting a better understanding of what's going on in my body with the AI(s) is helping my outlook as anything unknown is much scarier to me. Definitely makes me think of things I need to ask the Rheum. about when I go back in a little over a week. Thanks again.