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Thread: New Member in NH, waiting for dx

  1. #1
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    Default New Member in NH, waiting for dx

    Greetings! I am so glad I have found you all as I have felt pretty alone lately and having a hard time understanding all I have been going thru.

    A brief introduction- I live in NH and just turned 40 and apparently fell apart the same week! I recently graduated nursing school and became an RN.

    For years various docs have thought I had Lupus on and off but I have always tested seronegative which was puzzling. Today there are more tests and more known which is leaning towards a dx of lupus for me.

    I have been through a PE at age 29 which nearly killed me, flares of sx prior to periods, have kidney trouble, migraines, muscle and joint pain, seizures, red palms, etc. etc. etc. etc. ALL signs that would point to lupus.

    Well fast forward to now. Having had serious neurological symptoms I had to leave my job as I had just begun and not eligible for leave or protected by FMLA. Could not even get a sick day. I was doing horrible anyhow due to symptoms, it was like watching a slow train wreck I could not stop. Having graduated with honors despite being a single working mom, all I had worked so hard for was falling thru my fingers. My emotions were/are not what they usually are- I am all over the map on that, not the stoic woman I usually am!

    This most recent bout is second in several months (last one followed my grams death- I was her caregiver and very close). My MD (actually an ARNP) puts me on Topamax for migraines which increased my symptoms 20 fold. After this, I finally go to a neurologist.

    This neurologist reminds me of House on TV! Without the crassness. He is very thorough and I am so very thankful. I like his attitude and his communication skills are top notch and he is willing to work and research for an answer.

    I was diagnosed with Lyme but have three MDs arguing whether it is positive or not... A whole other issue! In the interim I am doing treatment for it as it cant hurt and may help. I was diagnosed in 2005 with Valley Fever (Coccidiomycosis) having positivve titers, but sent blood to UC Davis lab who said they were false positive. All they do is VF testing and research and their tests are the gold standard. So it was not VF. Is the lyme also false positive I wonder?

    Anyhow, neurologist was aghast that after my PE that nobody ever looked into clotting or other blood disorders. Off I go for 15 vials of blood and even more tests!

    Now many are coming back normal or negative and there are so many of them. I tested positive and very high for antibodies to some clotting antigens and he called yesterday and said start an aspirin a day and wants me to go to Dartmouth to see a rheumatalogist, hematologist and toxicologist. He has one in mind for me to see.

    He starts telling me that he does not have all the answers as his specialty is neuro but many with lupus have this and are sero negative so he is leaning towards Lupus at this time. He says they (dartmouth) will make a determination based on medical history and labs, but it more and more it sounds like I have found an answer. He just wants to make sure I never have another PE he says! I think he may have honestly just saved my life! I will be probably put on coumadin which I am not fond of, but will if I have to.

    I have had problems since I was a teen and hoping this will finally come to an answer. Before, the MDs were seeing the negative ANA and saying nope it isn't lupus and not looking any further which I am certain many of you can relate to!

    Although this is long, it really is the truncated version! I am grateful to find this site and would welcome friendship and information as I go thru the next few months of unknowns.

    I am also considering going to Mayo Clinic in FL as they seem to specialize in Lupus. Or maybe the Lupus Center in Pittsburg. I just don't know yet. Has anyone gone to either for proper diagnosis/exclusion?

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    just thought I say welcome...
    The worse the bad times are the more we appreciate the good things in life..

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    Default hi

    Hello and welcome,

    Glad you found this site cause there are many lovely people with the knowledge you need.I dont have so much knowledge but recently i was told it was Lupus. I have found out though or told its actually M.E. I too had a P.E so OUCH i know that pain and dont want a repeat any time soon. Whether i stay as having M.E or that diagnosis is changed is anyones guess (Angel chuckles at the doctors) but i hope not....it gets a bit frustrating after a bit. I so hope someone comes along soon and gives you the input you need and im sure they will. Lovely bunch of people here......so welcome and i hope you feel a little better knowing we all understand.

    Love
    Angel.xxx

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    Default Welcome fellow RN

    Welcome!! Gald you found this place. I recently found it myself, what a blessing. It's nice to know that there are others out there who are going through the same thing and understand. I am a nurse also but have the fortune to work from home. It's been a blessing. Let me know if I can help in anyway and if you need to talk. We're all here for each other and that is something I love. :P
    Ladyrn
    "I will not let this disease define who I am"
    Dx-Lupus, Sjogren's syndrome,antiphosolipid antibiody syndrome, hashimoto's and fibromyalgia and insomina.
    Meds-Plaquniel, Methotrexate, Vit D, Flax seed, asprin, lipitor,armour,premarin,celebrex,folic acid,ambien,hydrocodone,skelaxin,colace,imodium,pr ilosec,antibiotics, and new ones added daily

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    thanks everyone! What I was definately diagnosed with yesterday was antiphospholipid syndrome, aka Hughes syndrome. Evidently it goes hand in hand with lupus and a key factor to being diagnosed as seronegative.

    I have been having livedo reticularis for years without knowing it was abnormal as it always flares when I am cold.

    I have been making a list of my med history, symptoms, family hx, and meds I am taking as well as list of where I have to get copies of records from to take to the specialists I will be seeing.

    I am hoping all this can be done before my insurance runs out....

    What type of work can you do at home? I am afraid if on immunosuppresives can I even work on a regular floor? I was doing OR nursing (circulator) but neuro sx got really bad and it was pathetic. from what I am reading possible TIAs are causing this.

    I am happy to hear how blessed everyone is on here, as I have felt so alone lately and worse to come I am sure. Been pretty emotional lately and wishing I wasn't single and worried about the future and hoping this does not ruin me, but determined to not let it!

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    Default Personal message

    I have sent you a personal message regarding my story and my work. You are not alone and have support from a lot of great people here.
    Ladyrn
    "I will not let this disease define who I am"
    Dx-Lupus, Sjogren's syndrome,antiphosolipid antibiody syndrome, hashimoto's and fibromyalgia and insomina.
    Meds-Plaquniel, Methotrexate, Vit D, Flax seed, asprin, lipitor,armour,premarin,celebrex,folic acid,ambien,hydrocodone,skelaxin,colace,imodium,pr ilosec,antibiotics, and new ones added daily

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    Welcome to the board kukukajoo

    My mother had lupus, my sister is diagnosed as well. I've had problems since I was in my late teens but still no diagnosis here. Blood work is all over the place and I have a rhuemy who doesn't put much stalk in lupus, she thinks it's a catch all that doctor's use when they dont know what's really wrong with you.

    By the way she doesn't seem to know what really wrong either :lol:

    It's difficult to switch doctor's here, I'm on several waiting lists.

    My mother worked, my sister is working and so am I. There are days I wish I weren't working but I guess it's a reason to get up and get moving which I find really does help.

    Mostly it depends on how your lupus is presenting.

    For me, I have joint issues, fatigue, headaches that last three days and cant be shushed with medications. I also have malar rash, butterfly rash, IBS, and other goodies.

    I'm functioning quite well now that the plaquenil and arthrotec 75 have kicked in. Plus I work out every day.

    When I say I work out...trust me it's gentle, mostly to get my joints moving.

    Glad you found us. Hope you find the support and information you need. This is a great group of people.
    Oh look ... a cookie

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hello kukukajoo,

    My name is Rob, and I just turned 41. I was diagnosed with SLE five years ago. I just live up the road a bit from you in Maine. I live on the Penobscot Bay near Searsport. I know how you feel about so many things you've worked hard for slipping through your fingers. I worked for years building my own business, and had finally become reasonably successful when I had the rug pulled out from under me. Was due to marry my fiancee and that went south as well. I had to go on full disability, and basically start my life over. So far so good on that front.

    There are so many people like you who are stuck in diagnostic limbo. It was actually a relief when I finally got my diagnosis. It can be a real emotional rollercoaster. Anyway, I just wanted to say hello, and welcome you to our group. Make yourself at home.

    Rob

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    Rob we are going to have to get together when it gets a bit warmer out!! yep, I am a fair weather friend for sure and shameless about it!

    It IS a huge relief to get a diagnosis. Having had lupus come up as a possible culprit for so many years so many times and just my symptoms and accompanying ailments are really classic textbook. Just that darned negative ANA was always always throwing people off. Knowing now that I have this APS is a good thing, as it is making the puzzle picture clearer and I don't think the MDs can argue anymore that the negative ANA means no lupus. I just want to get treated properly and better, get rid of the pain and have my spunk and energy back!

    Where do you go for treatment and where? Are the MDs good about letting you participate in care ie making suggestions, not wanting to take steriods and trying different approaches but being versed enough to treat you well?

    I am sorry your life has changed so much and have to say if the finacee could not endure that you are so lucky to have found out now even though it must have been painful to go through. Besides I have seen your pics, and with or without lupus you look like a good catch!


    I will reassess my job situation soon and I think I will be able to work at least part time. It is easier to make it thru a grueling day of work if you know you can drop the next day and sleep all day if needed, which with me is needed lately. I just gotta get rid of the pesky neurological symptoms.

    Well I gotta run, have tons of reading to do on this site and others. Then finally I think I have the energy to clean my house (at least some of it!) , it is beginning to develop a funny odor from dirty dishes in my room! I hate to admit but if someone came in my house at this very moment, they would not be thinking very well of me! If a friend popped by unannounced at this moment, I would die of a heart attack and embarassment!
    Krissy in New Hampshire

    DX: Antiphospholipid syndrome, Raynauds, Lyme disease, and lupus "suspect"

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    Sits in the corner, I think you already know this but you REALLY need to switch docs for sure! Have they bothered to test you for anything else like the APS that I have?

    You just need to RUN far far away and get someone who understands and is willing to help you solve the mystery. I have had a MD nearly kill me 11 yrs ago when he sent me home from ER with a full lung hemmorage from a PE and I nearly died that nite. Told me it was pleuirusy the jerk! Then back then never tried to figure out why a healthy 29 year old not on birth control never tested me for lupus or anything else to find out why it happened.

    I have learned that MDs are not gods. Some are great and will admit their lack of knowledge. Some will truly listen to a patient (the good ones) and others just have been hardened somehow and really need some help getting back to what being an MD is all about.

    So if this jerk cant listen to you, is so narrow to not believe in Lupus and just not treating you well he/she needs to go to for more training!

    Okay, I am off my soapbox now. Sorry. Just so sick of MDs not doing their jobs and in the process harming patients.
    Krissy in New Hampshire

    DX: Antiphospholipid syndrome, Raynauds, Lyme disease, and lupus "suspect"

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