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    Talking hi

    Sorry I think I put my post in the wrong place please delete it if so, it's supposed to be in this section.

    OK maybe I'm jumping the gun, but when my dr told me it's a great possibility I have Lupus, I ran with it. She said that based on my medical history and exam - I have 8/11 criteria and have to get testing done this week...it all fits and I just want a "name" for the craziness I've been through...am I pathetic for doing that?

    These are documented symptoms from doctors appointments;

    I 've had dizziness/fainting - since age 9; headaches - since teen years; miscarriages; Group B Streptococcus (pregnancy) blood sepsis; extreme swelling in feet, edema in legs, hands - off & on; anemia (11.0); skin rashes; mainly upper trunk area, head/scalp; kidney/urinary problems; left flank pain; EFGR 66/Creatnine 1.0; WBC, blood, URO, ketones, leukocyetes in urinalysis; extreme fatigue; shortness of breath; abdominal discomfort/pain; nausea, vomiting, diarrhea, constipation intermittently; abdominal pain/bloating; enlarged liver; diffusely echogenic; numbness on feet; chest pain; nausea, vomiting and diarrhea; lump under left arm - baseball size; left flank pain, diarrhea, constipation, on cold symptoms, feels like flu; extreme fatigue; urine dipstick - 1+ leukocyes; EKG - Sinus Rhythm 51, multiple PVC's, incomplete RBBB, QT interval short for rate - Urinalysis color light yellow, character cloudy; EFGR - 59; creatnine 1.3 ; palpitations, arrythmia's; rash across cheeks and nose (looks like a sunburn;worse when in sun); sun/light sensitivity; heat intolerance; hair loss; joint & muscle fatigue/pain; mouth/tongue sores (roof of mouth, side of tongue); poor memory/brain fog; sometimes it's difficult to remember events and simple names of things, other times no problems at all; depression; sore throat; numbness in left hand/leg; muscle pain & tenderness; stiffness/soreness upon waking; blurred vision, eyeball pressure (feels like eyeballs are going to pop out) itching, dry eyes, occassional excessive watering; right eye twitches; ringing in ears; Moderate obstructive sleep apnea; NCS/OI; ANS dysfunction - HUTT; Cardiac Ablation - malignant heart arrythmia's.

    After I put this all together and read it, I said wow I didn't realize so much was going on with me. I am missing records from 1997 - 2000, so who knows what else I could put down or add to.

    Maybe someone can give me some guidance or advice here and I hope others don't have to wait a lifetime to get diagnosed.
    TIA
    Last edited by lisa33167; 03-04-2010 at 04:27 AM.

  2. #2
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Lisa,

    I saw your duplicate thread in Lauri's Lounge and I edited it so people will be directed to this thread, and for your convenience, all your answers and responses will be in one place. The important thing is that your message be in an area where it will be seen and responded to quickly, by the largest number of people possible, and for that, this is the place.

    I want to tell you up front that NO, you are NOT pathetic in any way, shape, or form for wanting to put a name to your symptoms. Gotta know your enemy before you can mount a proper defense.

    So, on to your symptoms. Lupus can have a wide range of symptoms, and no two people or cases are exactly alike. I was diagnosed with SLE in 2004. Being a guy, I'll leave the female specific stuff for the other ladies here to deal with. Overall, many of your symptoms are not common with SLE, but that does not mean they do not happen. However, Some of your symptoms, one's that we consider the more common ones associated with the disease, are definitely there in your list. In particular the ones I've experienced on your list are the quarter and dime sized patches of hair missing, I had two, they eventually came back, but that's the piece of the puzzle that finally led to my diagnosis. It's called Alopecia Arreatta. The others would be the brain fog, mouth sores, extreme sun sensitivity, terrible fatigue, joint pain, and the rashes you mention, although I've never had the typical Malar "Butterfly" rash across my face, I get it most everywhere else though.

    Many symptoms associated with Lupus are transient, one of a kind type things that may only happen once or twice. I've woken up with what is obvious AI related inflammation in parts of my body never affected before, and had it go away never to return. The disease activity is weird that way. Many of your symptoms could be from a myriad of other conditions, however you are approaching this wisely by focusing on the most likely candidate for the time being, and within the scope of the website and discussion, I'll keep my focus on Lupus for now as well. It's easy to get sidetracked and overwhelmed (thank you brain fog).

    You have already done alot of your homework, and I see you are familiar with the diagnostic criteria, this is good. One thing I do not see in your list is the results of an ANA (anti-nuclear antigen) blood test. Although there is no single test conclusive of Lupus, a positive ANA result is a very strong indicator. Do you have a Rheumotologist? They are the specialist who usually makes a Lupus diagnosis. I suggest you find one, if you do not already have one, make an appointment sooner than later, and take your list of symptoms to the Rheumo and tell them you want to be tested to see if you meet the Diagnostic Criteria for Lupus. Stay focused and be persistent, don't let anyone tell you "it's only in your head", because it's obviously not.

    Lets see what other's here have to say. We have an excellent body of knowledge here with members who have lived with Lupus for many years, and thrived despite it. We're a pretty social, easygoing group, so please make yourself at home. Welcome, and I hope we can help you find the answers that you need.

    Rob
    Last edited by rob; 03-03-2010 at 11:12 AM.

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    Thanks Rob

    I went to my neurologist that did an EEG last year, for what I thought could be nerve damage. After she took a complete history and a very extensive exam, she said she was sending me for blood tests for AI and said I had 8/11 markers for Lupus. I go this Friday for my blood tests (Ana, cbc, cmp, immuno (something I cant read her writing) urine immuno (again something I can't read) HB or HG AC and 2 other tests I cant figure out. She picked up on what 8 other doctors in the past year have not, I'm relieved but scared at the same time. (I know you all can relate)

    I told my husband what she said and said NO way I could have Lupus, but I didn't know what it was until I read about the symptoms and said WOW. Then it hit me about my hair - my mil asked when I showed her last year my hair if I had been tested for lupus, enter the denial phase of anything being wrong lol

    Dr said with the other things going on with me she can't put me on medication, but does want me to see a Rheumotologist after I have the bloodwork, ct scan (cant have mri due to pacemaker/icd) and EMG so I don't have to have tests done again at their office.

    I'm up in the air about the ANA thing though, I've read many tests say negative when you do have it or positive when you don't have it or switches from one to the other, but I'll find out after I have them done Friday. Either way, I feel like this is the right track.

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    Yes, it does sound as if you and your doctors are on the right track now. Today is Friday, so you are seeing your doctors today. Please tell us what you discussed, what was decided, and how you are doing?

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

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    I had all of my blood work done and going to call my dr today and see how long it will be before they get the results and request them send me a copy asap so I can prepare for my appt at the end of the month.

    I had this really crazy idea from another forum - spend a few minutes in the sun to "help" your ANA on your blood test.

    wow it threw me for a loop and I only spent 10-15 total out side - it was about 50 here in FL but a UV index of 10+ on and I felt like I was roasting. I burned so bad my eyes swelled almost shut and I thought I wasn't going to be able to get my blood work done. I have been so sore and aching all over that I can barely walk or sit up and just this morning been able to do anything

    I've had a problem with sun/light sensitivity for the past year or so, but this by far is the worst I've ever had.

    just waiting on pins & needles for my results :P

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    arrrggg I called my dr's office yesterday and tehy told me the secretary was out so everything was on hold for a week and not sure when they'll get my results - it could be a week or if she had me tested for other stuff it may be 2-3 weeks before I know

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Quote Originally Posted by lisa33167 View Post
    arrrggg I called my dr's office yesterday and tehy told me the secretary was out so everything was on hold for a week and not sure when they'll get my results - it could be a week or if she had me tested for other stuff it may be 2-3 weeks before I know
    Waiting like this really sucks. Sometimes I think they forget that we are hanging on the answers they give us. It can be terribly stressful to sit and wonder with no answers. When this happens to me, I just try to tell myself that we are making forward progress overall, and waiting is a part of that process. Try to stay busy with activities to keep you from worrying. I know It's easier said than done. I had a bad memory lapse on my way home from the store on Saturday (I think) and got lost. I have a bunch of tests with my neuro tomorrow, so I'll be doing the waiting game too.

    I'm incredibly sun sensitive too. Even before lupus I was. I'm really fair skinned, never was able to tan, just burn, and really fast. Try to be careful about your sun exposure. I don't think the idea of intentionally getting sun exposure to help with your tests is a good one. Just be careful. I hope you get some answers ASAP, and I hope you're having a good day.

    rob
    Last edited by rob; 03-09-2010 at 08:01 AM.

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    oh Rob, that's terrible how did you find yourself? hehe sorry no offense I have a 9 yr old Autisitc son and getting lost is no laughing matter; we have him on Project Lifesaver because the school he was in LOST him! he got scared during recess when some other children were fighting on the playground and ran to the media center and made himself at home reading for awhile before they found him [thankfully] now within minutes they can track him to wherever he is if he ever gets lost again.

    sometimes the waiting game is worse than the news the drs want to tell us; went my round of that a few times last August when I had heart surgery

    I've lived in FL since I was young and have gotten used to the heat & humidity here, never had a problem even being outside all day doing whatever - beach yard work etc until I got really sick about 1 1/2 years ago - since then I've noticed the heat intolerance and sun/light sensitivity, I just had no clue anything was wrong with me until August 09. Since I've never had a problem with the sun and have hide instead of skin, I thought I'd see if the sun idea made any difference, now I will be extremely cautious.

    good luck with your tests and hopefully you'll get your results quickly :P

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Lisa,

    You're a very punny girl! Hey, if you can't laugh at yourself, life can quickly become more serious than it needs to be.

    Long story short, I went back to the last place I thought I could get back to, which was the grocery store I had just come from. I drove right past my road on the way, and I did see the street sign with the name of my road, but the letters were mixed up, and I could only understand the individual letters, not the actual word they formed. Anyway, I made it back to the store and a payphone (cellphones don't work in my area). I keep the phone numbers of friends and family written down and on me at all times for just such an event. I got ahold of my girlfriend and she came and had me follow her back to my house. She's extremely understanding, and supportive.

    It was an odd sensation. Earlier in the evening, I kept thinking I forgot something. Every minute or so, I would think I locked my keys in my truck, or that I forgot my wallet. Very strange. I'm fairly sure this new problem is related to MS, not SLE. It was different from my usual Lupus brain fog. The funny thing is, I know this area like the back of my hand, and I used to have a somewhat photographic memory for maps.

    I know what you mean about heat intolerance. I used to live in Arizona, and was also stationed in Southern AZ while in the Army. Although I've always burned easily, I was acclimated to the hot climate there, and had no problem being outside working in the heat. That all changed in the months leading up to my SLE diagnosis. I now have no tolerance for heat. I start sweating and it does not stop even when I would go inside and sit in front of an A/C unit. It would take hours to cool down. Got very light headed too. Not fun. That's one of the reasons I moved to Maine. I live on the Southern Maine Coast where the temps are not too cold in the winter, and never hot in the summer. It's a very mild climate overall, and has been beneficial in many ways.

    My neighbors son back in AZ is Autistic, and he has a system like what your son has. It sure did save his parents alot of worry, knowing they could find him easily. He would get lost from time to time, and like your son, it was usually triggered by some sort of stressful, sudden situation that scared him. The technology available these days really is amazing.

    Rob

    PS-The waiting game is definitely worse than the actual news.
    Last edited by rob; 03-09-2010 at 01:09 PM.

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    hi lisa,

    i just wrote this long welcome to you, and poof, my internet went down and it was gone....oh, well, no one here will be surprised that i had computer problems. ha ha ha

    welcome welcome welcome. You will find that this forum is where you will find how to live with lupus. Any debilitating disease requires that we learn new skills, and that we make different choices. Please know that someone is always here to help whenever you have any questions....rob and saysusie have already demonstrated the compassion and knowledge among our members.....they are the foundation of the family.

    i am going to send this now, so as not to risk loosing again. Just know that i have read your posts, and i think you are an amazing woman who knows how to fight for one's health....
    Phyllis

    share a smile today

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