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Thread: Please tell me what you think...

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    Default Please tell me what you think...

    I am new here and am in the process of trying tirelessly to obtain an answer as to my symptoms. I feel as though lupus is definitely on the "white board" as one of the possible diagnosis's for my symptoms. I would like to see what any of you has to say and what pointers you have for me in still attempting to obtain my diagnosis...

    Here are my symptoms:
    1. Achy painful musles and joints -
    2. Muscle weakness with an occasional spasm
    3. Mouth sores on occasion
    4. Costachondritis (chest pain)
    5. EXTREME Fatigue - debilitating at times
    6. Occasional fevers of unknown origin
    7. IBS
    8. Headaches, frequently, some tension, some migraine.
    9. Occasional numbness, tingling in fingers, hands, toes, and feet
    10. Dry mouth - I feel like I can never get enough to drink
    11. Dry eyes
    12. Tinnitus on occasion
    13. Difficulty concentrating, short term memory fog
    14. Symptoms get worse upon heat/sun exposure, have a hard time cooling down

    Here are my current diagnosed conditions:
    1. Anemia for which I currently see a Hemotologist on a regular basis
    2. GERD
    3. IBS
    4. Hypertension
    5. Anxiety
    6. B-12 deficiency
    7. Swollen glands (Recently had a swollen node removed, negative for cancer, now my other glands swell frequently for no known reason)

    I also have a history of Pancreatitis for which they never found the cause (and I don't drink), and Tendonitis.

    In addition, I have a family history of auto-immune disease with my mother having had Multiple Sclerosis and Rheumatoid Arthritis. I have had an RA test which was negative.

    I am trying to tell myself that I am not being a hypochondriac, these symptoms are real, and am trying to get through each day. Currently, I don't have health insurance and am having to save up so that I can go to a Rheumatologist. In the meantime, I suffer, mostly in silence because I feel that people just think I'm complaining most of the time. I am overweight, I'll be honest about that, but I've always been overweight, since I was a teenager and I'm 39 now, and my weight hasn't changed much over the last few years. The doctors always go back to the weight and never seem to look beyond it here where I live and I know that something is not right.

    Any suggestions, support, tips, etc. anyone could offer are greatly appreciated. I feel like I possibly have lupus, and if not lupus, definitely some other auto-immune condition...

    feeling hopeless lately...thanks....susan1971

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    I am no expert or dr. But it sounds an awful lot like lupus. Have you had blood test that point towards lupus? Just as a positive ANA? Other people will respond on here and be more helpful and have better advice! It just sounds like it to me. But I am fairly new to all this. There is a "sticky" in one of the forums about the 11 critieras for lupus. You may check that out. I think it's in the newly diagnosed section! Hope this helps!

    On a side note welcome to site and hope it helps you out!

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    Thanks for your response. I have had an ANA test about 5 years ago in 2006 which was negative. I have reviewed the 11 criteria and I believe that I qualify, but I guess I just second guess myself and wanted to see what others who are familiar with the condition thought about my situation.

    I don't know about anyone else, but sometimes I think that my friends and family look at me like I'm wishing to have something or that I'm making more out of my pain than I really feel, when in reality, my wish is only to know what I do have so that I can educate myself and my family and form my plan for treatment so that I can have the best life possible.

    Again, thank you for your response. It is appreciated.

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    Hi Susan! We are so glad to have you join us! There is no way for us to tell if you have Lupus or not but, I agree, it should still be on "the white board". I have almost all of the symptoms you have and I had too many dr's "toss out" lupus for way too long. Finally I found a Dr that knew what he was doing and he said "of course this is Lupus!". If you have a Dr (or Drs) that are not listening to you the fire them! It is not Dr Shopping to try and find someone that knows what they are doing. Tory just told you about the Sticky that lists the 11 criteria for diagnosing Lupus. You don't have to have all 11 nor do you even have to have the 4 all at one time for it to be considered. Lupus is diagnosed on a cumulative level which means you can have one today and it can go away and then another one can come up. You don't just look at the one that is there now you look at both because you look through the whole history of the patient.

    The most important thing that I have to say is this: You are NOT crazy. You are not a hypochondriac. You are not seeking attention. You no longer have to suffer in silence. We are here for you and we never get tired of listening!

    Welcome to the family
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Hi Susan,

    Welcome to the WHL and nice to have you with us and never think your an hypochondriac or mention it to doctor's or specialist's because that will give them a good reason to fob you off.
    A large majority of your symptoms i have day after day, i can't say you have Lupus but there's definitely something going on with either an automimmune disease or diseases or Lupus.

    I really hope you able to get the money together to see a specialist soon but i'm just letting you know that when bloods are took refering someone having Lupus, it makes the blood fluctuate and give off false reading's, as alot of we have had no end of bloods took till a definite reading as showed.

    I wish you all the very best Terri xxxx

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    Thanks to all of you who have replied. This craziness is a struggle day after day and I get tired of hearing myself complain sometimes. It's nice to know that I'm not the only one in this "boat". I am closer to getting to schedule an appointment with a Rheumy and hopefully will by weeks' end.

    I've had a bad weekend this past weekend. Hands mysteriously swollen and blue/purple and horribly painful all day Saturday.

    I went out with my husband and son to the mall on Saturday and then of course, on Sunday, I was useless. I am so frustrated with that feeling of not being able to do things with my family without having to pay for it the next day.

    I did notice on Saturday that my symptoms are certainly worse when I am exposed to sun/heat. I've never had a rash per se, but fatigue, swelling, muscle pain, and overall ill feelings seem much worse after minimal time to heat/sun exposure. I realized this when we stopped at a small flea market on the way home from the mall. It didn't take much for me to want to go back to the car.

    Well, thanks, again for "listening" and giving me your great advice. I am still on the road to figuring out what's going on with me. Wish me luck.

    Susan

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    I think about all of those symptoms could relate to an autoimmune disease except maybe irritable bowel, not sure of the tinnitus either. An ANA test is fairly cheap without the reflux testing. I can get it done for around $30 if I was paying out of pocket. Just because it was negative 5 years ago, doesn't mean it is now. I think I would get that rechecked.

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    Just an FYI.. IBS is something that that often goes along with an Autoimmune disease. It is very common for people with Lupus to have IBS or other bowel issues.
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Quote Originally Posted by susan1971 View Post
    Thanks to all of you who have replied. This craziness is a struggle day after day and I get tired of hearing myself complain sometimes. It's nice to know that I'm not the only one in this "boat". I am closer to getting to schedule an appointment with a Rheumy and hopefully will by weeks' end.

    I've had a bad weekend this past weekend. Hands mysteriously swollen and blue/purple and horribly painful all day Saturday.

    I went out with my husband and son to the mall on Saturday and then of course, on Sunday, I was useless. I am so frustrated with that feeling of not being able to do things with my family without having to pay for it the next day.

    I did notice on Saturday that my symptoms are certainly worse when I am exposed to sun/heat. I've never had a rash per se, but fatigue, swelling, muscle pain, and overall ill feelings seem much worse after minimal time to heat/sun exposure. I realized this when we stopped at a small flea market on the way home from the mall. It didn't take much for me to want to go back to the car.

    Well, thanks, again for "listening" and giving me your great advice. I am still on the road to figuring out what's going on with me. Wish me luck.

    Susan
    Hello Susan,
    It is crazy day after day and you've hit it right on the nail, as i never know what to expect each morning it just does my head in.
    Well it's nice to hear your getting close to seeing a Rheumo and touch wood for you this end it's a good one, as i can't say much for mine but there we go that's life for alot of we.

    If you hands are swollen, which i have that may be your joints but to be a blue/purple i'd said you've either got Primary or secondary raynauds, as i've got Raynauds Disease and suffer all this are your hands cold alot and you find it hard to get warm.

    Well i'm no Doctor.lol but i'd wait for your diagnosis but Raynauds and other immune diseases can be a large cause of the sun interfering with you, always where 50 block and never let your body be exposed to the sun to much or florescent lighting can do it, i stick to the shade myself.

    Susan i wish you all the best of luck with a diagnosis but bloods will need to be done and hopefully your mind can be put a rest whith what your dealing with, instead of going around in a circle wondering this and that.

    Hugs Terri xxx

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