Really not sure what to do anymore! Can anyone help me?

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





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Post Edited By Moderator (Screaming Eagle) : 5/30/2011 11:18:08 PM (GMT-6)

Hi Nicki,

Sorry you are dealing with so much, I would also suggest bringing someone with you to appts, since I started doing this everything gets explained thoroughly. I remember a few years ago I was taking prednisone and I felt like superwoman I could work 10-12 hr days and then come home clean the house, make dinner, do laundry, have a date night with hubby and after I tucked him in I still had energy to wash floors. I was so disappointed when it ran out.

Take care
Rose

Thank you everyone for your support!!! My doctor is doing a "cervical MRI" to look at the swollen lymph nodes in my neck. They are getting fairly painful (not real painful like my bones feel in my legs and back especially) but pretty uncomfortable. Without the prednisone, the left side of my neck is swollen out to my left ear--and on it is still pretty puffy.

I think she wanted to "see" it first before she orders a lymph node biopsy (I think she is planning to take the whole lymph node out if I understood her right). I am just so worried about coming off the prednisone because everytime I do, then I can't get out of bed--literally!!! I am so weak that I can't move and the past couple weeks have been such a blessing.

To be able to get up and play with my son and work on my school work (and finally get mostly caught up after 3 months of getting behind in it) and all... I just wish these doctors could have more understanding and help for what I am going through right now.

They just keep ordering the next test a month out, another test a month out from that--and it drags on and on without really addressing the symptoms at all.

Thank you all for all your help and comfort! Reaching out to you helps me a lot!!! Nicki

Maybe ask to see an endocrinologists and ask for thyroid testing...low or high
thyroid levels can make you weak and tired...get your thyroid checked out...
that's about the only thing I can think of. don't be afraid of the mri, it'll go
by fast and ask for ear plugs they are loud...to me it sounded like indian drum beatings
If you are afraid of small places then let them know as they can give you something to relax you...
well wishes and keep on pushing for a dx...

Thank you Chartreux for the suggestion. I did actually see an endocrinologist because I have had a pituitary tumor for years now and that was their obvious first concern with my symptoms but she checked my TSH, LH, FSH, GH, and prolactin levels and they were all fine....

In fact, she wants me off the steroids: pronto.... and said she would rather see them bush me up with a bunch of pain meds than be on the steroids... that scares me too...

Pain meds help (minimally) for the few hours but you need more and more and they only help the pain, not the weakness. The tramadol I am on is giving me longer relief through the day and the neurontin really helping a lot especially at night. Then the prednisone is what is giving me the real relief from just about everything!!!

thanks again,
Nicki

Thank you Blondie! I just got back from my interstitial cystitis doctor and she gave me a note for school! I was so grateful! She said that usually IC goes hand in hand with autoimmune disorders and it would really explain a lot to her that that is what is going on too. She really made me feel validated. I am hoping my new family doctor does the same thing for me!

I really appreciate all the support from everyone! I am hurting pretty bad right now from the "Big" day out I had so I have to go rest--but thank you everyone!!! Nicki

Thank you Sandi! I was very grateful for my doctor today to give me at least a "differential diagnosis" of lymphoma versus autoimmune disorder. It at least gives a name to one of the two possibilities they feel that it is: a NAME finally!!! At least now I have something concrete in hand. I know it may sound stupid, but when you are this sick, it is such a relief to know WHAT you have wrong with you instead of just that no one can tell you! So that was really good today in my mind to have that in writing for me to use for my school note and/or work note.

I really appreciate all of you so much!!!! Nicki

Thank you Trudy! I see my family doctor on Friday and will ask her what I need to do at this point. If I am not satisfied, then I will ask the specialist I saw yesterday what to do. She seemed to be very understanding and believed me plenty.

She actually seemed almost relieved that she also had a real explanation of what was causing all my symptoms! She said it would explain all of it! (Lupus). That made me feel a lot better as most of the other doctors have said it was possible but didn't seem real clear on it...

I appreciate you!

Nicki

Hi NikiS, it is really frustrating when trying to deal with the unknown of everything hitting at one time. But, like the others have said you have to push forward to get the answers you need. Sometimes advocating for our own care is a reality in life. Many of us have had to do exactly that. One thing I want to point out to you is if you have several things going on at one time, the drs are going to only work on one problem at a time to rule out different things. It does feel like they are not getting it at times I know, but that is how most drs deal with a patient that has multiple complaints.

As far as Lupus or any of the auto-immune disorders drs will not dx that sort of a condition unless they are absolutely sure that is the problem. Because one test may be positive and the others are negative does not mean you have the disease either. I have four auto-immune diseases and believe me none of them were diagnosed quickly or easily, crohns disease, ulcerative colitis, lupus, 2 different types of psoriasis and possibly psoratic psoriasis. It took years for the dx of these problems and it was not because I had bad drs either. There are ramifications with insurance companies when a dr dx's some of the auto-immune diseases this is why they wanted to be absolutely certain of the dx. My drs wanted to be sure before labeling me with something that I many not even have because of how insurance companies can react.

As far as steroids are concerned, they are a medication not for long term use because of their potential side effects later on down the road. Most drs use them on a limited basis too. As a rule they do make us feel like super woman while taking them. I know when I was on them I got everything done and always had all of this false energy. I was on them for 3 1/2 yrs by a dr that had no clue about being on them long term. Now because of the heavy use I have osteoporosis of the lumbar spine as a result of them. So, no they are not good long term. I ended up in the hospital for over a week because of high blood pressure and I was at stroke line level when admitted. So, again, I will tell you short term for a few weeks is fine but not long term like even the time frame you have been on them. In fact considering the amount of time you have been on them, you probably should not have anymore for at least a year. I have had them this year and cannot have anymore for a year.

If the drs were positive you have Lupus they would have put you on Placquenel, that is one of the meds for Lupus, I have been on it for over two years now.

As hard as it can be try to be as patient as possible to find out what is wrong with you. You sure don't want drs rushing in and giving incorrect dx's thats for sure. Hang in there.