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Thread: Not diagnosed, but struggling to get one of any kind.

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    Default Not diagnosed, but struggling to get one of any kind.

    Hello all! I am at my wits end. I am 23 years old and feel like I am 60. Here is my "life story"
    Back in 2004, I had a bad case of Mono. Since then, I have struggled with constant fatigue which has worsened over the last two years. I have had TONS of ear infections, UTI's, 3 cases of bronchitis within 3 months and once with pleurisy, kidney infection, sinus infection and to top it off a MRSA infection. I also have added a HUGE list of seasonal allergies and all, yes ALL, antibiotics to my list of anaphylactic reactions. I am sick, all the time, regardless of isolation from the public. In fact, right now I have a head/chest cold that is starting to become ear/sinus infection.
    Recently, the fatigue has gotten so bad that just taking a shower proves tiresome. I have also had that achy "arthritic" feel in my hands and lower legs. This has gotten worse with doing physical therapy to improve the function of my shoulder from a car accident three years ago where I STILL have inflammation and muscle pain all the time. Actually, yesterday I went to do physical therapy, and i came home in such pain in just my shoulders only to lay down to rest and wake up with achy pain in my entire body. Regardless of my activity level, the fatigue is still there.
    I've also started having this flushed looking face where my cheeks and nose are red and warm to the touch. Not really the "butterfly rash" associated with Lupus, but still not normal.
    I have gone round and round with doctors for about two years now trying to convince one of them that something isn't right. It took me moving to a slightly bigger medical city to get a doctor to at least test my blood for things like cholesterol, blood sugar, vitamin B12, you name it it was tested. Out of that set of results, the vitamin B12 was slightly low, so I am now taking a supplement. Also, my doctor ran an ANA screening... which came back positive, only to be negative upon further testing.
    I am back to square one of not having a diagnosis and not being believed of my symptoms. It's to the point where I am getting depressed and pissed off because I cannot get anyone to listen to me, including my own husband and family.
    Is it possible to have lupus and have a negative test? Is it possible that this could be some other auto immune disorder? PLEASE PLEASE PLEASE someone help me figure out what to do next! I just want relief and to not be achy and so fatigued all the time!
    Sincerely,
    R Nodurft

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    HI there - I'm sorry you're feeling at your wits end and depressed. To answer your question, yes, it is still possible that you could have a range of any one or multiple auto immune conditions. Also, the ANA can be positive in one test, but negative the next. My ANA was consistently positive for several tests but after a while of being on plaquenil it eventually went negative even though my disease state was active still. You would be shocked at the possibilities your symptoms can point to.

    There is still a lot they can do but it may require a little investigation on your part. It is quite normal for women in general (unfortunatly) to automagically be categorized in the 'depressed' or 'anxious' category when standard tests don't come back positive. I will encourage you to avoid being labeled depressed or having anxiety without an actual phsychologist or psychiatrist labeling you as such because it can cause problems when you need help. (told to me by a psychiatrist I visited when I kept being written off as depressed and it was determined that my depression wasn't the issue, my body was. Ironically enough I had to fight to get what I needed and ended up having cardiac bypass)

    While there are some forms of psychogenic physical symptoms related to depression and anxiety is- depression and anxiety is more often than not linked to chronic health conditions whether it be nutritional or chronic disease/inflammation (go figure! if you feel like crap all of the time you just might get depressed about it right?) Depression don't help the crap feeling either.

    Furthermore, no one knows your body better than you. In my experience people know when something is not right and a smart doctor worthy of your business will be a member of your team, working with you using his experience in medical investigation and testing to find what the possible conditions could point to and help develop a treatment plan or intermediary symptom relief while investigation is ongoing. Sometimes it is simply not known until the disease state progresses enough to be recognized more easily (such as in the case of AI diseases) However, many AI diseases (actually most of them) respond to prednisone and other anti-inflammatories. Physicians often try a short dose of prednisone to see if you respond to it which helps them determine whether or not your body is actually inflamed. It is very possible you could be in a very early stage of an autoimmune condition and just do not have enough clinical symptoms to satisfy your current physician or group of physicians enough to form a good treatment plan or answers for you. It is in your best interest that they not be to quick to answer questions they're unsure of, however, a good physician will get you to on a road to finding out or at least clearly communicate with you.

    With your allergies and infection history alone, I would personally recommend you locate a good Immunologist (not an allergist but Immunologist) Many of them overlap with Rheumatology. The reason I recommend that is because there are some forms of inflammatory arthritis which produce some of the symptoms you mention in response to infection and stress and an immunologist is usually qualified to perform the right tests to thoroughly check out the health of your overall immune system. Like Rheumatologists, Immunologists are highly specialized while keeping all body systems in mind during patient evaluations. General Practiioners are not equipped to handle complex cases unexplained illnesses. period.

    If you would like help getting your records organized and some further direction email me. I volunteer as a patient advocate
    32 YO Wife, Mother and Advocate
    Lupus - Subclavian Bypass May of 2009. Ectopic Lentis, Scoliosis(not lupus related)
    Current medications: Aspirin, Plaquenil, multi vitamins, folic acid, Methotrexate, Tramadol PRN

    You can find me on facebook at www.facebook.com/sororenotis
    Please tell me you are from here and who you are if you add me there.

    I work full time and Leader for International Autoimmune Arthritis Movement
    http://www.iaamovement.org/

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    Hi Rnodurft:
    Welcome to our family where your story is so very familiar to many of us. It is very difficult when you cannot get a diagnosis and your own family will not believe you! Unfortunately, this happens too often and to too many of us!
    YES, it is possible to have Lupus with a negative ANA. In fact, it is called "ANA Negative Lupus". In simplest terms, ANA-negative lupus is a condition in which a person’s ANA – or antinuclear anitbody – test comes back negative, but the person continues to exhibit traits/symptoms consistent with someone who is diagnosed with lupus. The thing that too many doctors forget is that the ANA test is used to screen for lupus, not to diagnose it or to dismiss it!!
    If your ANA is negative, your doctor SHOULD then test you to see if you have a high titer anti-double stranded DNA antibody; test you for that Anti-Sm (Smith) antibody; consider doing a biopsy to determine if there is kidney damage, consider doing a biopsy on your lesions/rash to determine if there is skin disease consistent with Lupus. Lupus SHOULD NOT be ruled out just because the ANA is negative!
    Also, it is quite common for our ANA to be positive at one reading and negative at the next. This is because Lupus is a disease that changes within us. Symptoms that we display today may go away only to be replaced by new symptoms tomorrow. Or, symptoms that are causing minor problems today can turn into serious complications tomorrow and visa- versa! That is the heinous nature of our disease and one of the major reasons why it is so misunderstood, so hard to diagnose, and why our family often does not believe us when we constantly complain about different symptoms. Lupus is also a disease that affects THE ENTIRE BODY, that is why it is called a systemic disease. Lupus attacks ourconnective tissues, our joints & ligaments, our skin, our internal organs, our blood, etc. So, it is the nature of the disease to attack us in different parts of our body and in different ways. Since it is a disease that attacks every single part of our bodies, then it stands to reason that we would have numerous complaints about what is happening to us and our complaints would be as varied as the disease is. If anyone understood the disease, they would understand that concept.
    It might be helpful for you to educate yourself about this disease AND to insist that your husband educate himself about the disease. He can come here to read the posts in the forums here. It is important that he understand that you ARE NOT making anything up, you are not a hypochondriac and that this is a disease that can be fatal..so this is a serious issue that he should take seriously.
    It might also be helpful for you to seek treatment from a rheumatologist. Lupus is a rheumatic disease and rheumatologist specialize in these types of diseases. This type of doctor might know better what tests should be run and what medications you can take in order to alleviate some of your symptoms.
    In the meantime, please know that we are here to help you in any way that we can, to let you know that we understand and to make sure that you know that you are not alone. I wish you the very best.

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    Thanks for your replys! I appreciate knowing someone out there knows what I am going through and can help me get started with having doctors listen to me!
    I have one question, in my area (Omaha NE) we have allergy and immunologists and then we have rheumatologists. I have already been to an allergy and immunology doctor, who passed me to her PA. Grr. I have talked to one of the regular allergy and immunology doctors there who treated me twice for anaphylaxis from anitbiotic testing and I did bring this topic of an autoimmune disease up to him. He quickly brushed me off in saying some people are just like this and are just allergic to almost every drug on the planet. So, with that, do I go back and see the original allergist/immunologist who dropped me on her PA? or do I skip that and go to the rheumatologist who doesn't have the immunology aspect and can mainly only treat the aching?

    I did tell my husband that he needs to take on the responsibility of learning more about this with me and on his own. Actually, I got mad at him when he came home from work because he tends to act like this is all in my head, so I flat out asked him. He tried to reassure me that he does think something is wrong but he also told me I tend ot jump to conclusions that disease A is what I have. He also was skeptical that I was truely allergic to 6 antibiotics... as were all of the doctors I have seen. I have since proved him wrong, as you cannot fake anaphylaxis. I just wish there was a way that doctors could tell what was wrong faster.

    Thank you for informing me on what to do about the depression label! I had that with my first doctor, and I feel now that this doctor, who started out being very helpful, has also labeled me as depressed. The first thing out of her mouth last week was depression. Well of course I am depressed! NO ONE WILL LISTEN TO ME!! And to top it off, apparently they tested my blood for inflammation and that came back negative. Then explain my body aching, the fact that my shoulder is STILL in pain from a car accident 3 years ago? Short story: was in a car accident, saw many orthopedists and finally one diagnosed me with an inflammed shoulder. Treated it with 4 different anti-inflammatory drugs all of which I reacted to with bad side effects. I restarted going to a chiropractor who does physical therapy as well. The physical therapy/chiropractor visits were helping until yesterday when my entire body decided to flare and become inflammed and swollen. My hands are so swollen I can't get my wedding ring off. I know my body, this is inflammation. End of story, stop treating me like I am a drug seeker!!! (sorry needed to vent about doctors in general and their labels!)

    I think I read on this set of forums that writing a journal of my symptoms and how they affected my body/day will be helpful. I think I might try that so that when I finally get somewhere, I can show the doctor this and give a more detailed description of what is going on with my body.
    Thank you for letting me vent... my hands are in too much pain to keep typing.
    R Nodurft

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    Finally! I went back to my regular doctor feeling normal today. She agrees, there is something not quite right that I would be having symptoms in "waves" and then it is like a switch and the symptoms dissipate. So, I have an appointment for Thursday with a rheumatologist, apparently one of the best in Omaha.

    Thanks for your advice! I am keeping a journal, and being assertive with issues like being labeled drug seeking and depressed! I will keep you updated!

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    Hold your ground! it is not all in your head, nor are you a drug seeker..like I tell the doc's...I could buy that stuff anywhere if that all I wanted!! A good rheumatologist should be able to help you ..it took me 4 rheumy's til I found the right one. Don't give up. Thankfully my GP is pretty smart too and believed me too. Good luck in your journey.
    Andrea

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    good plan, also take pictures of your hands when they get that swollen and also when they're not as swollen, That should shut em up too
    32 YO Wife, Mother and Advocate
    Lupus - Subclavian Bypass May of 2009. Ectopic Lentis, Scoliosis(not lupus related)
    Current medications: Aspirin, Plaquenil, multi vitamins, folic acid, Methotrexate, Tramadol PRN

    You can find me on facebook at www.facebook.com/sororenotis
    Please tell me you are from here and who you are if you add me there.

    I work full time and Leader for International Autoimmune Arthritis Movement
    http://www.iaamovement.org/

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    Quote Originally Posted by pandagirl View Post
    hold your ground! It is not all in your head, nor are you a drug seeker..like i tell the doc's...i could buy that stuff anywhere if that all i wanted!!.
    lol!!! Amen pandagirl!!
    32 YO Wife, Mother and Advocate
    Lupus - Subclavian Bypass May of 2009. Ectopic Lentis, Scoliosis(not lupus related)
    Current medications: Aspirin, Plaquenil, multi vitamins, folic acid, Methotrexate, Tramadol PRN

    You can find me on facebook at www.facebook.com/sororenotis
    Please tell me you are from here and who you are if you add me there.

    I work full time and Leader for International Autoimmune Arthritis Movement
    http://www.iaamovement.org/

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    Hello all!
    I finally went to a rheumy yesterday. He had his med student take my history and then pass it to him. He then came in and did ask deeper questions and did a physical exam. Upon bending a few fingers and my wrist joint, he went and got the rest of his med students. At this point I was kinda freaked out with all the people in the room but when he expolained to his med students my case, I felt more relaxed. He stated that they would never see another case as flexible as I am at the age of 23. Final diagnosis: hypermobility, connective tissue disease and fibromyalgia (the last one thrown in because of family history).
    It seemed odd to me that he didn't run any more testing, but I do agree with him that because of the physical exam, the lab results my regular doctor did to rule out Lupus/Rheumatoid Arthritis, and the family history he could diagnose me. So now I am on yet another vitamin supplement, and I am taking Tylenol PM at night to try and get the fatigue under control. I am also to do daily low impact exercising and stretching to alleviate the long term symptoms. As far as today goes, no life restrictions are needed however, he did state to expect arthritis at a younger age and to expect to have joint replacement surgeries. As far as all of the allergies, antibiotic allergies, he has no idea what the connection is, but it is obvious that the two seem to be going hand in hand. The more my symptoms flare, the sicker I feel from seasonal allergies.

    Now. My challenge is to figure out how and what I need to change in my life. I also need to figure out how I am going to balance adding a job with all of this and eventually pregnancy. I have so many questions like "would getting wrist braces or hand supports help keep my hands from hurting while I am on my computer?" and "Should I avoid exercises like ballet or running?" Of course none of these are really appropriate for the rheumatologist but more trying to get suggestions from other people with a similar case as mine.

    On that note... PLEASE feel free to post what you have found helpful/not so helpful in your life!
    Thank you all so much for helping me out!
    Rnodurft

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    When i first started with this i even began to think it was in my head and no one else seemed to take it seriously either. That is when i found this web site and all of the most caring and informative people. I too have a list as long as my arm to antibiotic and drug allergies. It scared the hell out of me to take a lot of these drugs especially the lastest methotrexate but i think i am starting to have some posttive affects from them. Hang in there and i hope you find some definate answers soon. Love and prayers Bonita

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