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Thread: Help, need feedback

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    Default Help, need feedback

    I saw a rhuem for the first time yesterday. My gastro had made a preliminary diagnosis of lupus even thought my ANA was negative. My GP's partner agreed even though my GP thought the lack of a positive ANA ruled it out completely.

    The rhuem "didn't want to scare me" so he wouldn't express a definite opinion. With the holidays in the middle of my testing I know I am going to go nuts so I am hoping y'all can tell me something. I either have atypical lupus or atypical everything else. We are definite on fibro at this point, or at least I think we are. I have some internal damage but it has long since been ruled out for these condition. I have been seeking a gastro diagnosis for the past 6 years and even lupus is better than this unexplaining mess. If it is a gastro thing causing this then bluntly I should be dead because getting this sick from gastro should be a sign of things shutting down completely due to ruptured intestine and infection plus loss of blood. As I have been to the ER many many times with these symptoms leaving the doctors scratching their heads I do not think the gasto question can really be raised again.

    I have these symptoms

    1. Chest pains and difficulty breathing at times which the rhuem agrees are not GERD. I went to a cardiologist last week while on the prednisone and he only did an EKG because I was feeling so much better on the prednisone. these occur only during a flare. My blood pressure is all over the place and can drop low enough to scare doctors yet be reading as very high in the same day.

    2. Itching all over my body often accompanied by a sensation like having biting ants crawling all over me. It is like pins and needles only way worse. There are times I cannot bear even to have clothes on. I just sit on the bed and cry it is so bad.

    3. A burning hot rash on my face that my gastro called a malar rash when he saw it in its normal state. It is hidden right now because my face is red and broken out from the sunscreen. Usually the rest of my face is pale with a bright red butterfly shaped rash on my cheeks and nose. It burns and is really hot to the touch. Sometimes when I have it my lips feel chapped. I also feel feverish. Even when I do not see it I can often feel it as a burning sensation. The skin is normally rough, scaly and dry as if I had a bad wind burn. It is always accompanied by other symptoms of a flare and is especially bad if I get in the sun. I also get rashes on my arms if they get in the sun.

    4. Extreme photosensitivity to the least amount of sunlight. If I go to the store just being in the car makes me sick and going into the yard is worse. I lose the ability to think clearly, develop symptoms of the stomach flu, have a headache and joint pain. In addition, I do a complete about face personality wise. Paranoid, angry, bitter and depressed basically describes it. It is to the point I have ruined every vacation my husband and I have gone on by bursting into tears around 100 miles from home and crying uncontrolably until days after we return home. I cannot explain it emotionally as my mood will be good before we leave and for the first hour. Then I just collapse emotionally for no logical reason except for the sunlight. This is also accompanied by dizziness, vertigo, inability to stand without falling, muscle weakness, swollen face and belly, occasional chest pains, confusion, itching, muscle and joint pains. It is usually followed by rectal bleeding and intense abdominal cramps on the left side. Obviously, if you feel like this everytime you go on vacation you are going to be depressed and crying BUT the mood change comes on first. At the time I will feel I have every justification for being mad but in retrospect I know I was really off my head. My husband knows it is because I am so sick and has been trying to get me to believe it long before the lupus idea was suggested. To be honest I just thought I was a really toxic person at times.

    4. Falls, dizziness and vertigo. Sometimes I feel the room is spinning but most of the time I just feel disoriented. Standing suddenly or standing for any period of time results in falls. This is always accompanied by confusion. This happens almost all the time when I am flaring and is one of my biggest complaints. I am a shut in most of the time because of this but it also does go away. Adreanal gland failure was suggested as an alternative reason for this but then it should happen all the time. Instead it seems more related to sunlight, illness or stress. I am usually anemic but not to the point it should cause this.

    5. Muscle weakness. Most of the time I need help doing normal household chores or dressing myself. (I can't keep my balance putting on pants at times.) Frequently I need help sitting up. With prednisone I did 75 crunches so we are talking about a huge difference.

    6. Intestinal Bleeding. I frequently pass bright red blood which is accompanied by liquid bowel movements. Crohn's was ruled out once but the rhuem thinks it could be in my small intestine and was just missed during the last colonoscopy. He says I couldn't feel the difference between it being in my large or small intestine but I am sure I could due to the symptoms of my intestinal damage. Also, the blood is bright red and that is strictly a lower digestive system thing. Farther up it gets digested and changes color. I have been to gastros for 6 years trying to find an intestinal reason for the list of symptoms so I am fairly sure it isn't crohn's disease. My innards should glow in the dark at this point from all the CTs Xrays etc and I have cornered the market on barrium. I just can't buy the same old gastro suggestion. And even if it was crohn's the doctor tells me I would also have to have the adreanal failure and rosacia in addition to the fibro for it to explain all the symptoms. With all those taken into account there would also still be no reason for the extreme photosensitivity.

    7. Headaches, migraines and stiff neck

    8. Mouth ulcers. Some red, some white, some painful, some not so this is something that is too vague. I also have nosebleeds and nasal ulcers.

    9. Joint and muscle pain. We have a yes on fibro so that explains some of these but it is hard to say. There are sharp muscle cramps and dull aches that randomly wander over my body. There are arthritis like joint pains which usually are neither red nor swollen. As they happen when I am in a flare I have not been looking for swellings due to the confusion. This is especially true because I have put on weight and that combined by intense water retention during these times make me look puffy all over.

    10. Exaustion. I sleep all the time and when I am awake I am tired. This is pretty much all the time even when I am not flaring.

    11. Swelling. I occasionally when in a flare puff up like a water ballon. So big I cannot wear my pants. I am talking huge.

    That is basically it for the big problem areas. The gastro is having many tests run but I came out ok on my first ANA. (he had a second one run yesterday along with about a dozen others but I won't know anything for 2-3 weeks due to the holidays)

    He says he can accept the negative ANA and is going to keep testing for it. His only arguement against the lupus diagnosis is that the 60mg dose of prednisone did not have me 100% ok. According to him 40mg or less usually works for most people with lupus. For me I was great at 40mg for 3 days and then needed 60mg to keep the itching at bay. At this point I am tapering down to make my tests accurate but it is hard to say what the results are going to be without it.

    Either way, if I have lupus I am atypical. The only thing is if I do not have lupus then I not only have multiple illnesses in combination but they are all also severe AND atypical.

    Can y'all give me feedback as to your bodies' reactions to prednisone. I need to know if you are "cured" of a flare by it or if it can improve symptoms and then fade out before your next dose.

    Also, please give me feedback on your malar rashes. Do your match what I have described.

    And lastly can anyone think of anything that would explain my extreme reaction to the sun other than lupus? It is almost like being two people. The changes in my personality are that great. And my body just falls to pieces. All I have been able to find online is lupus related unless you are just talking about a rash or there are medicine reactions involved and this happens without any medicines. The rash itself is not the problem that worries me. It is the rest of it that I care about. The rash just seems to link everything.

    I like this doctor and he is taking me seriously. It is just that he is not as specific as I would like. I know they don't want to put ideas in our heads but I feel like this matches lupus better than anything else. If it isn't I would have to have both the crohn's disease, rosacia, and adreanal failure and all three would be abnormal cases where the symptoms do not quite fit, the tests were none productive and the symptoms are way worse than normal. HELP!!! I am going to lose my mind over the holiday if I am without some kind of an answer.

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    Wow...you are dealing with a lot! I think you'll get wiser souls than me weighing in here (Saysusie?) but I can tell you one or two things based on my experience and the information gleaned from doctors. First, you don't need a positive ANA to have lupus. Yes, most lupus sufferers DO have a positive ANA, but it is possible to have lupus without that marker. (and, conversely, it's possible to have a positive ANA and NOT have lupus.) Secondly, there is no magic dose of prednisone that works for every person with lupus. It depends on the level of inflammation, the clinic symptoms you have, your own body's chemistry - lot's of things.

    You certainly have a lot of lupus-like symptoms, no doubt about it. But, there are a lot of diseases that have similar symptoms. And, it's not at all unusual for someone with lupus to have multiple auto-immune disorders, or other diseases, at the same time. It makes diagnosis a nightmare for many of us.

    I'm glad you like your doctor - keep pressing for answers and if you aren't getting them, look for someone who has more experience with autoimmune diseases.

    I hope you find those answers - and the treatment that will help you find some measure of relief.

    Jody
    "If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

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    Thanks Jody,

    The gastro and my GPs partner gave me the impression they were sure and I do think the rhuem is leaning towards lupus because of the photosensitivity. It is just the sitting here waiting and wondering. And I feel like no one I know really would know anything.

    Lord knows it isn't a Christmassy subject.

    It is just being in limbo that is getting me so down. Even if it is something horrible you know what to expect. Thinking I might not have it is actually worse than knowing I did would be as I am going to have to give up many of the things I had planned upon doing when I got well.

    PJ

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    Oh my goodness! :shock:

    I can say that the prednisone made me feel much better, but did not heal me from the flare. My energy and pain got better, but not totally well However........if I could feel like that I would be happy. It was almost heaven.. :angel:

    One thing that the rheumy did say was that the fibro was not supposed to be touched by the prednisone. He also thinks that there is something else, not sure what. I am sorry for your pain.


    Cyber hug from me to you,
    :B-fly:

    Karen :x-mas:

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    Hi PJ,

    I agree with Mnjodette. Remember everyone reacts differently. It sounds like you have many symptoms of Lupus alolng with the Photosensitivity. Are you on Plaquenil? That will definately help.

    Chest pains might be pleuricy which is fluid around your heart. It sounds like Prednisone is not working for you. It's time to try maybe something else? Plaquenil? Pins and needles sounds like neuropathy (nerves) which many people do get. From posts in this blog, Neuroton is typically prescribed for the neuropathy.

    Has your rheumy ran an ESR (Sed rate) and CRP (C-Reactive Protein)? They most definately need to be run if they haven't done so far.

    Don't lose hope and don't give up!! It's not in your head. Hang in there and take care. I hope you feel better.

    Faith :lol:

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    I am still in limbo so they are taking me off the prednisone to run some other tests. The one for crohn's has been run before so I doubt it will come to anything. Believe me, my intestines are the best mapped territory in the USA if there were anything there to be found they would know it already. The other thing is the possibility that my adreanal glands are malfunctioning which they need me off meds for too. I might have that but alone it will not explain anything except the falls so if I do have it then it would be secondary to something else. Still best to rule it out.

    I'm guessing they will put me on the plaquinel after my tests on the 16th of January. Funny, I used to pride myself on doing things my own way. When it comes to this I wish I could have a nice straight forward case of it if I have to have it. This is not a good time to be quirky.

    I appreciate the three of you posting. I feel funny using this site until I have had everything else ruled out but I just feel so bad and this is the only diagnosis that fits. I have googled the others and they leave too much unresolved. I am so afraid of going years before this is fixed. The rhuem ordered the two tests you mentioned with a bunch of others but I will not know anything for a few weeks due to the holiday.

    He said "nothing is an emergency here". I kept my temper because I know it was meant to come across as reassuring me that I wasn't dying but it went right through me. When you have been sick this long and this badly it is an emergency to you even if the rest of the world doesn't care one whit.

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    Hi PJ,

    Please keep us updated when you receive the test results. Also, ask for a copy for your personal records.

    Merry Christmas,

    Faith

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