I have not been online in a couple weeks... been really frustrated about
things. I don't know if anyone remembers me from before, but I have had swollen lymph nodes, high RF factor, severe pain in my bones/joints, and extremely weak along with a lot of other weird things like rashes, sores on my head, etc... But to make a long story short, there was a big question about
whether it was Lupus or not and I went to a rheumatologist who did a bunch of bloodwork primarily for Lymmes disease because he saw an old tick bite scar on my leg and then told me that everything was normal and I didn't need to come back, but when he sent my bloodwork paperwork back, the RF factor was still well above normal but slightly lower than the first time.
The first time they had taken it I was not on steroids, but I have been on them for around 9 weeks now (very high doses) which is the only thing allowing me to get out of bed at all from being so weak. Then my new family doctor gave me tramadol to help with pain and neurontin. For the first time in probably over a year, I had a full night's sleep with the neurontin--it really helped.. but after about
a week it became less effective during the day so she upped my dose to 3 pills a day which is helping a lot. Now I am really scared because I will run out of the prednisone which I have been taking 20 mg a day (morning and night of 10 mg each) at the end of the week and I am already where if I am even late on a dose I start getting too weak to move too much. All my doctors are telling me I have to come off the steroids and I don't have Lupus because I had a negative ANA test which they said tests for it. I don't know what to do anymore.
My lymph nodes are so swollen that my family doctor says she thinks it might be lymphoma and is having an MRI done on June 6th--but that is a week away from being off the steroids and I am trying hard to keep up with my schooling in the doctoral program because I don't want to give that up. I have worked so hard to get through school this far and kept good grades too. I am just beyond frustration with doctors!!! I feel that none of them care at all. I need a referral to see another Lupus doctor that is also a rheumatologist but since this is a new family doctor, she is acting kind of weird about
giving me the referral since she thinks it might be lymphoma... but if she was really concerned that was what was wrong with me, why has she made me wait almost a month for the MRI?
I feel like they don't understand at all how much this is ruining my entire life!!! I just want to be able to get out of bed in a day and not be in so much pain or so weak that I can't! I have a little 17 month old son that depends on me and while I have been on the steroids I have been playing all I can with him so that he knows how much he means to me--but what happens when I run out and can't get out of bed again like before? I am also working on my school work as hard as I can to get ahead because I don't know what I will do when I come off of them. I have no idea why the prednisone works such magic for me with my situation--but it does. I need a doctor that really understands me and can help but don't know of any that really do care at all! I just need someone to encourage me right now. I am so down about
all this and just at the end of my rope again with frustration.
I have been having a couple really good weeks here lately and so scared now that it is all going to end because none of these doctors care or believe me because things aren't showing up in my bloodwork the way they expect it to! Even when I had osteomyelitis as a child--I never had a fever, no high white count, no nothing in my bloodwork! Yet it was in late stage by the time they put a needle down in my hip bone and found it! Same with my grandmother's brain tumor (realized it was cancer only 6 weeks before she died because they didn't see anything in her bloodwork and kept telling her it was a pinch nerve) and same with my grandfather this spring who died within 16 days of being diagnosed with an aggressive form of leukemia and had been sick since October but nothing would show up for him on any tests!!!
I am not planning to sit around waiting to die of something if it does not show up in my bloodwork. I love my son and my husband and I want to live!!! I feel like these doctors don't care and would just be like "oh well, we did all the test right" if something happens to me--but they won't listen to me when I say what is going on is not normal and it is really bad right now!!! Can anyone help me please?!!! Nicki(post edited for easier reading. Please take note for future use, and split your paragraphs up into smaller units for easier reading)
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Post Edited By Moderator (Screaming Eagle) : 5/30/2011 11:18:08 PM (GMT-6)