PLEASE! I need advice! I'm flipping out and need help!
Hi. my name is Renee. I'm 35 with two small children 3 and 5. Here's my story. I really need advice what you all think what is going on here based upon your experiences. In 2000, 9 months after giving birth, my ankles were hurting do i went to the Dr. He took an ANA and it came back 1:160. Everything else was fine (SED, CPK, etc). Went to Rhumi and it was down to 1:40. Heard nothing after that. No mention of Lupus, nothing. Fast forward to 2003. Got a flu shot (i will regret that for the rest of my life) and things started going nuts. Tingling sensations (which have ceased), strange aches and pains (some in joints, but most not)...plantars facitis pain in feet. Went to everyone, Dr., Rhumi, neurologist..all was OK. ANA was negative, MRI's for MS was negative, blood work was fine. Still, sensations. On and off now since then. I have had a rash in my cleavage area where the breasts meet the skin (they are a DD and always were a B, so i figured with the sweat from that area, etc.) not raised, not scaly, just red. I dont see a mylar on my face, although my face does gets a little red in the sun (but goes away) but whos doesnt? Now, just went back to the Dr. and he took an ANA. It was 1:40. He said he does not think I have lupus. My hair has been shedding alot, although i just stopped nursing 6 months ago, wear my hair up in a ponytail all day so i dont brush it,so maybe its the days hairs i was supposed to be shedding? does it seem a little thinner, yes, but I do not have alopecia spots. My joints are not achy, some are tender if i poke them hard enough (elbow, knee). Its more muscle aches and sensations. thats all, though. Nothing else. My eye pressure is higher than it should be (early 20's) which is another new thing I've been dealing with. Eye Dr. says its ok, but keeping tabs for glaucoma. My memory hasnt been the greatest lately, like I'll forget where i put something, then I''ll remember. Rhumi hasnt seen me since the new 1:40 ANA (SED and CPK were normal, btw) i just got back, but when i saw here prior she thought I had Fibro. Ok, with your experiences, what do you think is going on here? I looked at the 11 criteria and only have the weekly positive ANA. For Fibro, I have 10 out of 13. I am a total nervous wreck. I am completely flipping out! I mean, I have two small kids! I'm there MOTHER! I NEED to see these kids grow up, see my grandchildren...dance wtih my son as his wedding! I'm hysterical writing this. If this is just fibro, whats up with the ANA? Dr. said some people just have it elevated. I dont know what to do. I dont understand. I made an appt for the DR for tuesday and I want him to do tons of blood work. Any suggestions? Does this sound like lupus? If so, what about living? Is this a thing I could live with for 40 years? I'm sorry to be so dramatic, but the thought of my kids...i cant bear it. Any advice (good, bad or indifferent) would be appreciated. Thank you and God Bless.
I understand how you're feeling. I've been pre-lupus since 2001. Had a very high ANA 1:1320, some joint pain (hospitalized with chest wall pain - they thought at first it was a heart attack), fatigue etc.
Have you been able to get back in to your rheumatologist? I would keep a daily journal and keep track of symptoms. Take a list of questions when you go to see your dr. The problem is, lupus is very difficult to diagnose and the symptoms can constantly change as well as your bloodwork.
In April of this year, I started having seizures and as my rheumatologist was on vacation, got in to see my neurologist. He got me started on seizure meds (after an MRI, EEg etc.) When I finally got all the blood tests done, a lumbar puncture etc, she ruled out MS and said I do have lupus of the brain and had to start cytoxan therapy right away. I've had 2 sessions so far. The first one wasn't bad but was very ill with the last one.
I have one son who just started college and was scared to get an actual diagnosis confirming lupus. I have since made sure I get enough rest, take vitamins, report new problems to my dr and get more exercise. Lupus is scary but can be controlled. Saysusie is an expert in this area and I'm sure she can give you more facts but I'd be happy to help provide support! Hang in there! A positive attitude can go a long way in improving how you respond to treatment!
Renee, I am sorry that you are going through this. Not knowing what is wrong can be very frustrating and scary. I'm not sure what your ANA means. Your first positive one looks like it was high. I have read that ANA can fluctuate throughout the course of your illness. Usually if you have a positive ANA with other symptoms, the doctor should look into autoimmune diseases. Unfortunately it can take years for symptoms to develop and to get a diagnosis. My first symptoms were very vague, but over the next year began to develop symptoms specific to lupus and also had some labs that supported lupus. I also had to switch rheumys to one who would listen to me.
If you have fibro, your rheumatologist should be treating you. Fibro can be mild or really debilitating, but the good thing about it is that it is not life threatening and does not attack any of your organs. I hope you don't have lupus, but if you do the prognosis is still prety good. I have read that most people with lupus can expect to live a normal life span because of all the treatments they have now.
I agree with catlady that you should keep a journal of all your symptoms. I also have 2 small children (3 & 7) and I also worry about being there for them. I have a lot of guilt about not having the energy to do as much with them as I used to. Hang in there and we are always here for you at this forum for support. Take care.