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Thread: tired of wondering do i have it or do i not?

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    Default tired of wondering do i have it or do i not?

    hi. new here. my husband thought it would be a good idea for me to talk to people who could understand what i am going through. i am having a difficult time believing whether or not i actually have lupus because my doctors have me questioning myself. in 1999 i had a sudden onset of double vision and went to eye doctor thinking it was glasses i needed. they told me i had optic neuritis in both eyes and i should be checked out by a doctor. after being tested for MS, diabetes, pseudotumor cerebri, etc and no one coming up with anything, i got frustrated and called a friend who i worked with who is a doctor and told him my frustrations. he took a thorough history and ran some bloodwork. my sed rate was 47 and i had a borderline speckled ana and was slightly anemic. he decided to diagnose me with mctd until further symptoms showed themselves. after that i had an episode of going completely blind. i forgot to tell you that my history includes fast heart rate,chest pain,unexplained raised red rashed on arms and legs and fatigue since teenager, most symptoms went away when i had my children from 1985 to 1990, they began to re-appear noticeably in 1995 and it has gone down hill from there. current symptoms are malar rash that sometimes comes and goes in a matter of hours, extreme fatigue, joint pain, high blood pressure, elvated blood glucose from steroids and possibly because i am very overweight, severe headaches, microalbuminuria in 2001, and now i am anemic and have more protein in my urine than before which was discovered this past week while i was admitted to hospital for severe headache and vomiting. protein was 198mg in 24 hr urine. md told me i probably had vasculitis and possibly lupus nephritis from flare. here is the problem. my ana and all autoimmune blood tests are negative. i have ever only had just the one borderline speckled ana and a few eleveted sed rated. i have not found a rheumy that does not make me feel like i am crazy yet please help i know this is long. any help would be appreciated

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    Angiern, welcome aboard. I see you are a fellow Floridian.
    For me, my blood tests bounce around. The dr basically just uses them now to see if anything is abnormal based on MY levels. Cause when I am feeling my worst is when the numbers are "normal". It's weird. After 8 years of not knowing, it finally took a biopsy of one of my rashes to get a final dx. I wish I'd have known it would be that easy for me but it just took the right dr asking for the right test. {{HUG}} It's awful living in limbo.
    Have you seen a Rheumy at all? If not, I'd recommend that and a dermatologist. Frankly tho, the rheumy's in this area (I'm in Tallahassee btw) SUCK! I finally found a good one but have to drive to Thomasville to see him. {{HUG}} Just hang in there and keep looking for the right dr, they are out there but they sure don't hang up signs that say hey I can help you. Hopefully Saysusie will have more info on the different tests. I don't even ask for my numbers anymore, I just have them tell me all is ok (as in not going to organs yet) or if there is a problem. I stress out too much if I worry about all the numbers. As they say Ignorance is bliss. And I trust my drs now so I can feel comfortable being in the "dark". LOL
    Has your dr friend put you on any meds at all to help with your symptoms?

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    Default Thanks for the Encouragement

    Thanks for the reply. When I did my post last night I had the fatigue monster sitting on me and brain fog like you would not believe, so I did not make a few things clear. My dr friend moved to Kissimmee and I no longer see him. He did start me on meds without a firm diagnosis, but since he left, the doctors I have encountered have been less than helpful. My PMD is wonderful(another friend I once worked with), but he is afraid to do anything without a specialist's ok. There is one Rheumy in town and he is a JERK. He once told me after I had been seeing him for about a year and I asked to get off Arava because of the side effects, that I had to do what he said and he would not give me anything else or tell me how to wean myself off the Arava. That was the last time I saw him. I have seen Dr. Zeb in Tallahassee and Dr. Fessler at UAB. Both of which told me I have Fibromyalgia. When I asked them why prednisone made my symptoms so much better(because if it were fibro, prednisone would make it worse) they could not answer. Currently I am seeing Diane Harris out of Pensacola, but have not seen her in about a year. When I began seeing her she ran all the usual tests and of course they were all "normal". She did continue the meds I was on and said she wanted to change my diagnosis to Undifferentiated Connective Tissue Disease. She did not really act like she thought I was crazy, but she wasn't willing to commit to a firm SLE diagnosis either. I thought, here we go again and I did my usual thing and decided to pretend I didn't have Lupus for the last year. I have been taking my meds, just not really seeking that all important diagnosis to validate that I am not crazy. God gave me a reality check with the hospitalization last week with the ultimate diagnosis being SLE CNS Vasculitis and Possible Lupus Nephritis. This got me back on the wagon to seek someone who will be sensitive to my needs and not treat me like I am a basket case. You asked about meds. Currently I am taking the following meds:Toprol XL 75mg, Prednisone 20mg daily, Methotrexate 17.5mg SQ Weekly, Mobic 15mg daily,Singulair 10mg Daily, Lasix 20mg daily,Folic Acid 1.6mg daily, Calcium 1800mg daily, Potassium 20mEq daily, Wellbutrin 200mg XR daily, Advair twice a day, Combivent twicw a day and flonase twice a day. Enough to kill a horse. My main concern right now is this protein in my urine, anemia and low serum protein. I really hope this has not moved to my kidneys. I am trying to get in with my Nephrologist, but there is only one group in town and they have a monopoly on things so it's their way or no way and I am still waiting to get an appointment. Sorry this is so long. I have always tried to handle this on my own, but really am getting overwhelmed and need some support. Thanks for your help!

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    Hey there. Dr Zeb well don't get me started on him. My PRIMARY dr wouldn't even let me see him period, and after hearing other things, well let's just say it's better that I didn't. I saw one rheumy at Shands and talk about JERK! I thought my dh was going to deck that one. Now I see Dr. McMillan in Thomasville. He's a little wierd but a great dr and I trust him. My co-worker has RA really bad and she is finally getting in to see him next month. (He has a long wait for first appts unless your primary calls to tell them how urgent it is). But I would totally recommend him if you wanted to drive there.
    Don't feel bad on the brain fog, we all get that mine has been awful lately.
    don't you hate it when you DO find a dr that is good and you relate well too and they decide to move? major PIA. It is so hard to get a dx at all and then to have to start all over is just a big migraine waiting to happen. I'm sorry you are going through any of this and hope you find a good one soon.

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    Hi everyone - I've been reading the board for a couple days and this is actually my first post. I just had to respond since you said you saw Dr. Fessler. I saw her for about 2 years and she helped some but not enough - she isn't very agressive with treatment. I have since moved to Dr. McLain at Brookwood in Birmingham and he is wonderful. His wife has lupus so he his very understanding. It sounds like Birmingham might be a long drive - I only mentioned it since you said you went to UAB.

    Also, if your ANA was tested using Lab Corp - their test has been known to not detect ANA in some patients. Dr. McLain has seen a couple patients including me that the test reported a flase negative. Lap Corp changed their test to a computerized method a couple years ago - the result will be a single number and not a titer. I have had a positive ANA for over 10 years and all of a sudden a doctor checked my ANA with Lab Corps new test and it was negative. Dr. McLain questioned it and sent my blood to a lab that still had humans looking at the serum and reports the results as a titer and I was definately still positive. He had one patient with severe Lupus that also was ANA negative with Lab Corps new test but definately positive with the older test.

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    Bama thanks for the news about lab corp and their new method :lol: My sister in law has been having some issues and they worked her up for lupus and she's waiting to see a rheumatologist. She was telling me the results of her ANA and I found it interesting that it wasn't a titer. Of course the hospital she went to couldn't tell her why it wasn't in a titer. Thanks for the news. I can't wait to share it with her

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    Default What a coincidence!

    I saw Dr Fessler at UAB back in 2001 or 02 I can't remember exactly. The first time she saw me she saw my butterfly rash and said "That is a malar rash if I have ever seen one" and was convinced with my history it would be Lupus. Well when all the labs came back negative,she did an about face and said I guess you just have Fibro and Rosacea. She gave me meds for the Rosacea which I used for several months without any relief and told me I needed to get better sleep. I have not been back since. Oh by the way she could not explain to me why the Prednisone that should aggravate Fibromyalgia made me feel like a million bucks. I am going to see the Rheumy I saw in Pensacola about a year ago who was sympathetic to me and stated she definitely thought it was some kind of connective tissue disorder, but did not want to commit to Lupus on Monday because I am now having Kidney problems. I told her last year I did not care if she called it the common cold as long as she treated the symptoms and did not treat me like I was crazy. She laughed and left me on Prednisone and Methotrexate. I thought I would give her another try. Wish me luck!

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    Good Luck - I hope this next doctor listens to you. Keep going till you find a doctor to listen. I went all over the country before I got sufficient help. You are definitely not crazy especially when your kidneys are evolved!

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    Default Saw my Rheumy yesterday

    Well I went to my Rheumy in Pensacola yesterday. I am glad I decided to give her another try. She really listened to me and looked at all the labs from my hospitalization . She said my Lupus must be very active right now because I am on moderate dose of prednisone and high dose of MTX and I am still spilling protein, having edema and BP problems. I asked her if she was calling it SLE now and she said with so many symptoms, she would feel certain it is. She did do some labs I have never had before though. Can't remember the names(I'm lucky if I remember my name) She said that she is very concerned about the CNS symptoms though. Wants me to F/U with Neurologist ASAP. Had a few funny things in my Lumbar Puncture. I asked her if we could do something besides increase the Prednisone and she said we are going to do both. I talked her down to only 60mg Prednisone(she really wanted 80 I think) and she said she wanted to talk to my primary doc and nephrologist first, but she wants me to have a Kidney biopsy and to add Imuran ASAP. I started the 60mg of Prednisone today and boy have I put out some urine. 4 liters so far and almost 4 pounds. My BP is down and I sure can breathe better. Edema down some, but not completely gone away. Can anyone tell me about Imuran and their experience with it? I am kind of scared. Actually I am real scared! It has finally hit me that this isn't just skin problems, annoying joint pain and fatigue anymore. This is taking a turn for the worse and I could die. I know this sounds extreme, but I am having a poor Angie day. I really don't have too many of those. Most of the time I just pretend I don't have Lupus and then God decides to give me a nice big reality check. Well I am certainly paying attention now. Enough gloom and doom. Sorry! I know this sounds twisted, but when I went to check out at the Rheumy's office, the paperwork she handed me had SLE checked and I was happy because it finally had a name and she believed me. Last time I saw her she checked Undifferentiated Connective Tissue Disease. One small step for Angie, One big step for Lupies in the Panhandle of Florida. Sorry this is long. Thanks for listening.

    Angie

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    Imuran is the trade name for azathioprine, an immunosuppressive medication. It is used to reduce the body's natural immunity in patients. It is very strong drug. If it works successfully, a patient should be able to reduce or eliminate the need for prednisone in their Lupus treatment plan. It is one of several steroid-sparing drugs. However, Prednisone should not be stopped with the addition of Imuran to the treatment. Your Prednisone dose should remain the same until there is improvement shown after taking the Imuran. Then your doctor will most likely start tapering your dose of Prednisone slowly, at one to five milligrams a week to avoid problems.
    Imuran may cause some bone marrow suppression and elevation of liver enzymes. Therefore, your doctor will check your blood tests regularly to monitor you for significant changes. You may have to stay on this medication indefinitely because Imuran is a long-term treatment.
    The main clinical improvement of symptoms occurs during the first year of therapy with Imuran. Improvement is gradual and it may take several months before you really begin to notice a change in your symptoms.

    Dosage varies from 100 mg. to 200 mg. per day and it is imperative that you take the medication exactly as prescribed by your doctor and never increase, decrease, or stop taking this medication without checking with your doctor.

    Contact your doctor if you notice any of the following side effects:
    Nausea and vomiting
    Fever or chills
    Loss of appetite
    Upset stomach
    Skin rash
    Diarrhea
    Cough or shortness of breath
    Cold sores in the mouth or on the lips
    Blood in the urine or stool
    Unusual bruising
    Fatigue
    Missed menstrual period
    Yellowing of the eyes and skin
    Hair loss
    Muscle or joint pain
    Darkening of the skin and fingernails

    I hope this has been helpful to you
    Peace and Blessings
    Saysusie

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