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    Question New person, looking for help.

    Hello,

    I have been having issues for years now. I can't even remember what my first issue was.

    Throwout the years I have had aches and pains everyplace, my family thinks that I just complain a lot I think.

    This year has been the worst.

    I recently went to my family doctor who listened to me about the ringing in my ears and dizzy feelings I get, and sent me to an ear nose and throat doctor (whom I adore) who took the time and listened to me. He sent me for an MRI of my brain. He thought I had MS, the tests came back negitive.
    I went back to my family doctor and told him how worse I feel, and he sent me to the Cleveland Clinic to meet with a neurologist who specializes in MS. She sent me for another MRI (it had been 6 months since my first) the results were, no change. There were just two gray masses. No lesions no black hole's nothing.

    My knee has been cracking forever when I get up or sit down...it just pops, makes a sound. It on occasion will just get stuck and cause me pain and I have to work it out.
    Well about a month ago out of the blue...I was in so much pain in my knee that I could not walk, I have never in my life experienced such pain, other then natural childbirth. I went to the ER, had an X-ray, I had a cat-scan...and it showed nothing. They sent me to a bone specialist who sent me for an MRI of my knee ( I go for the results on Tuesday). I am able to walk now, its still sore and is back to just cracking/popping when I get up or sit down. My OTHER knee is doing the same thing now. Popping and cracking.

    Every single day I am in pain, consent pain. I ache. My family things I complain too much. They don't understand. I am always so tired. I have to come home from work and take a quick cat nap before I can make dinner and help with homework.

    I am also scared because lately I can't think straight.
    Its like im foggy...i can't find my words.
    I have started to stay home and not go out in public because im embarrassed of the way I can't follow along or speak correctly.
    I get these weird dizzy spells where no-matter what I am doing, the room will spin super fast....then just stop...it lasts merely seconds.

    The ringing in my ears NEVER stops...today with the neck pain, its terribly worse.

    On occasion (this is new) I get twitches in my hands, and I cant use my phone to punch in numbers, and its hard to write with a pen or pencil. I am starting to develop a weird twitching in my left nostril, its not noticeable from someone else, but I can feel it, its rather annoying.
    I've gone from a full head of thick curly hair, to thin hair. I thought it was from stress. Until I started reading up on Lupus.

    A couple of times I was outside, and the top of my head felt as though it was on FIRE, the sun felt like it was burning me...I had to run fr cover under a shade tree, the sun/heat takes every thing out of me. I just can't handle being outside in it for a long time.

    Also, I am a teacher and if I have outside recess duty, last winter, the cold hurt me so bad, I mean I hurt while im out there, my bones just hurt. I was always wearing a sweatshirt, and sweaters inside at work last winter, no matter how warm everyone else was in the building, I was wrapped up. So im very sensitive to heat and cold temps.

    I just need to find answers. I posted on a different forum a few weeks ago and someone told me to look up LUPUS and I have come to do a lot of reading up on it, I seem to fit a lot of the symptoms.

    I do not have a butterfly rash, but I do have a rash, always have for as long as I can remember on my back, I never wear anything that doesn't cover my back, as embarrassed.
    Could that be related to Lupus?

    I don't remember having sores in my mouth or nose, however, at least 4 times last year I get a horrible sore throat and when I go to the doctor he tells me I have pharyngitis and gives me meds for that. Could be considered sores in my mouth?

    I don;t have anyone I can talk to. I surf the web trying to find answers.
    If anyone reads this...all the way threw, as I know its long....does this sound like LUPS?
    Could these be symptoms?

    I am making an appoitment first thing Monday to discuss these options with my Dr.
    I just need reasured that my thoughts are valid for bringing this to his attention...

    THANK YOU ALL!!!!

  2. #2
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    It could be lupus, it could be something else.
    Some of your symptoms go with lupus, but only a rheumatologist can determine if it is or not.
    That would be the first step you have to take, see a rheumie.
    But don't let your family get you down, you are not just a complainer, you have legit complaints, that need to be checked out by a specialist.

    Oh btw, welcome to WHL.
    Somebody else will be along shortly and give you advise.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    Thank you Debbie. I await some advice. I am actually on the phone as we speak trying to get threw to me General Dr. to see if he will give me a referal to a rumie. Untill this board I had never heard of one.

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    Quote Originally Posted by mom_of_two View Post
    Thank you Debbie. I await some advice. I am actually on the phone as we speak trying to get threw to me General Dr. to see if he will give me a referal to a rumie. Untill this board I had never heard of one.
    That is a good start.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    Hi mom of two and welcome to WHL. I have to agree with Debbie. You need to see a rheumatologist. That is the first step. One of the difficult things about Lupus is that it hits everyone a bit differently. Yes, there are things that are alike but out body begins to attack itself so I may have things that others don't have even if we have the same disease. It is as confusing for doctors as it is for us.

    It doesn't matter if this turns out to be Lupus or something else entirely. You need to find out what is wrong. Your life is being disrupted and you deserve to find out what is going on. Good luck with the rheumatologist!

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    hi mom of two,

    welcome to our family. please feel free to come around and ask any quesstions. We might not have the answers, but we can probably help. there is a trememdous amount of knowledge and compassion among this group, and i hope you benefit from joining us.

    i agree with the others, you should probably be referred to a rheumatologist. however, your GP can run the ANA test that will at least start the diagnostic process. But, just the blood work does not constitute meeting the criteria for lupus. a physical exam and discussion of physical symptoms are also needed, and a rheumatologist is the dr. who can put all of the pieces together. I had a positive ANA for almost 10 years before being diagnosed, my symptoms did not add up enough for a long time, so i went along for years knowing something was wrong, but with no diagnosis.

    i have to take the blame for the delay in diagnosis, i did not understand the symptoms and did not provide enough information to the dr. I recommend that you start a symptoms ledger, write down everything that you can think of, even if it seems minute. For example, my dr. kept asking me about mouth sores, and i always replied NO....well, i was wrong. I thought sores mean open sores in the mouth....that is not necessarily the case. Sometimes, i get raw spots, or swollen places in my mouth, these are considered sores.

    Reading the "stickies" here at WHL will help you identify many symptoms, so educate yourself, and go into the drs. office with your notes. this will help expedite the process.

    good luck, and please come around whenever you want to ask questions.

    by the way, how old are your children? i have 3 grandchildren, ages 7,, 6 and 2 months.
    Phyllis

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