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Thread: Hi My name is Samantha....

  1. #1
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    Default Hi My name is Samantha....

    Hi my name is Samantha, I am a sophomore at Oregon State University in Corvallis Oregon. I am studying Pre-Nursing. I am in a Medical Anthropology class, and I am doing a research paper on Lupus and I thought that it would be a good idea to start here. For the paper I need to interview a person who has Lupus. If someone could address these issues within 24 hours that would be great I would very much appropriate it. I am interested in knowing the following:
    1.) When diagnosed
    2.) What symptoms were present: prior to diagnosis and what tests were preformed
    3.) How old when diagnosed
    4.) Medications--current, past
    5.) Surgeries
    6.) Complications then and now
    7.) What worries you?
    8.) Quality of life at this time
    9.) Future treatments available?
    10.) Relationship with physician
    11.) Support medical and personal
    12.) Pregnancies


    Thank you!
    Samantha

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    Hi,

    My name is Harriet. I am also doing a project on Lupus for Social Anthropology at university but I also have lupus. I'd be happy to help you with your paper.
    1.) December 2005
    2.) I had joint pain for many years, was told they were growing pains by doctors but in 2005 the doctor finally sent me to see a rheumatologist at my local hospital. I don't know what tests they did. There was one called an ANA test and they did a full blood count as well as liver and kidney function tests. I don't know what else
    3.) 19
    4.) Lansoprozole, Ramipril, Mycophenolate Mofetil, Prednisolone, Warfarin, Alendronic Acid and Simvastatin. I was also on Hydroxychlorquine for a short while and NSAIDs
    5.) I had a kidney biopsy if that counts
    6.) In March/April 2006 I had a major flare which severely damaged my kidneys, gave me 3 blood clots (one in each lung and one in my right kidney), pleurisy and pericarditis
    7.) Not a lot, I'm in safe hands at the hospital. I am concerned I may be robbed of my fertility though
    8.) My quality of life is pretty good compared to some people who have lupus. I'm lucky and am still able to get around. I think that's mainly down to my medication. I don't have many, if any, flare ups now just a few occasional joint pains every now and then
    9.) I don't know what the future holds for lupus unfortunately, I'm hoping for medications that are safer to use during pregnancy
    10.) I have a very good relationship with my doctors
    11.) Medically I am supported by my GP, a Rheumatologist and a Nephrologist mainly. My personal support comes from my mother and my very understanding partner
    12.) I unfortunately had to terminate a pregnancy a few weeks ago due to my medication having teratogenic effects on my baby. It was extremely difficult

    Hope this helps,

    Harriet
    Last edited by AlphaWolf06; 03-06-2010 at 01:25 PM.

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    Thank you so much Harriet! This information will definitely help me write my paper! May I contact you if I have any further questions?

    Samantha

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    Hi Samantha,

    Yeah, you can private message me if you've got any more questions.

    Good luck with your project,

    Harriet

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

    I'm Rob, one of the Moderators here at WHL. Do you need more than one interview? Also, do you need an interview with a man diagnosed with SLE? If so, I'd be happy to answer your questions (with the exception of #12).


    Thanks,

    Rob
    Last edited by rob; 03-06-2010 at 03:19 PM.

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    Hi Rob,
    Sure that would be great to have a male's view who has SLE!


    Thank you so much!
    Sam

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    Would you like another point of view? My official diagnosis is Mixed Connective Tissue Disease, which means that I tested somewhat positive for four autoimmune diseases - Lupus, Sjogren's, Rheumatoid Arthritis and Psoriasis. It seems to be very common for us to have overlapping AI issues.

    1.) When diagnosed
    I was going from one doctor to another from April 2007 to Feb. 2009, when the diagnosis of MCTD came through.

    2.) What symptoms were present: prior to diagnosis and what tests were performed
    Meniere's Disease, Spasmodic Dysphonia, rashes and sores, joint pain (with AVN thrown in), neuropathy, frequent UTIs, migraines, dry eyes,lots of dental problems.
    ANA 1:16, then 1:32 later. SSa and SSb both positive. (full blood work-up) hearing tests, vocal chords tested, MRIs, bone scan, genetic testing, muscle biopsy, evoked response nerve testing

    3.) How old when diagnosed 51 years old (Sept. 3, 1957)

    4.) Medications--current, past Methotrexate, Plaquenil, folic acid, Allegra, Prilosec, multi-vitamin, fish oil, glucosamine-condroitin, cranberry extract, NSAIDs as needed for pain Botox injection in vocal chords 3-4 times per year for Dysphonia

    5.) Surgeries Appendectomy - 1998 Arthroscopic surgery, right knee - Dec. 2008

    6.) Complications then and now I have problems with many medications, including any opioid, such as Tramadol. The AVN was a huge complication - I had to travel and and teach with a wheelchair or rollator. I'm still in a lot of pain, and we think that it is still present.

    7.) What worries you? I worry that my children may have inherited some autoimmune issues. Some of them have some symptoms.
    I think that my mother and my aunt had these same issues, but were never correctly diagnosed. I worry that I may end up like them- they
    both lost their memories with dementia.

    8.) Quality of life at this time I had to give up a teaching job which I loved. I now have a good, but quiet life. I'm still able to drive, grocery shop, cook (love to cook!) and keep house (sort of). I still love to travel, and will travel overseas this summer.

    9.) Future treatments available? I know that some new drugs are being tested. I hope that they are approved soon, and that one will become available that is less harsh on my body than MTX.

    10.) Relationship with physician We moved recently, so I have a new set of doctors. I like my new rheumatologist.

    11.) Support medical and personal Besides my rheumatologist, I recently met my new orthopedic surgeon and I have an awesome physical therapist. I will be going to University of San Francisco next week to meet my new otolaryngologist for a botox injection, who is a friend of the one I had in Texas. I'll be meeting a new neurologist the following week.
    My husband of 33 years is my rock of support. He takes good care of me. My grown children are also very supportive.

    12.) Pregnancies I was very lucky that I had my children when I was young. I had five healthy, normal pregnancies and had four of my babies at home. I had one miscarriage - a set of twins.

    I hope that this helps. Good luck with your project.
    Marla

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    1. Diagnosed early 2009, symptoms for ten years prior
    2. Random hive break outs, random airway swelling, chronic fatigue and pain, hair loss, positive ANA titer for over ten years at 1:640, easy bruising and memory loss
    3. 22
    4. Plaquenil, mobic, steroid packs
    5. gallbladder surgery due to body attacking it
    6. I don't feel like I am getting better
    7. What worries me is being able to get pregnant, not being able to feel any better ever. Being a burden on the people I love.
    8. Quality of life is still ok. Still work a very strenuous job and schedule and am able to do it most days without complications. I get sick a lot due to my dec. immune system. I feel tired all the time and don't feel like doing much outside of work but I'm ok.
    9. Doc is looking at putting me either on long term steroids or low dose chemo drugs.
    10. physician is awesome. he is very personable and encourages me to call if I feel like I'm getting worse prior to our next appointment.
    11. I have a great rheumatologist, neurologist and I am looking at doing a concierge service for my primary physician so they can get to know me better. My boyfriend is amazingly supportive, he is pretty much the only personal support I have. Most people I work with call me a hypochondriac which really frustrates me. My parents don't even know I have lupus.
    12. No pregnancies yet. I have the lupus anticoagulant antibody so my chances of a miscarriage are high. Plus if I go on the chemo drugs, I will not be able to get pregnant.
    -micromedic
    I'd rather be hated for who I am, than loved for someone I'm not.

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Samantha, here you go-


    1.) When diagnosed

    I was diagnosed with SLE in early 2004.

    2.) What symptoms were present: prior to diagnosis and what tests were preformed

    I had two round patches of hair that suddenly fell out one day, it's called Alopecia Areatta. I had cognitive dysfunction (aka brain fog), Pleuresy, joint pain, rashes under my arms and on my ankles, mouth sores, and fatigue like I had never felt before. My rheumotologist did the usual battery of blood tests including the ANA test, sed rate, complement, c-reactive protein, and others. I had a skin biopsy, and kidney biopsy . There were many other tests, but the ones I've mentioned are the ones that were done when we started to focus only on Lupus.

    3.) How old when diagnosed

    I was 36 when I was diagnosed.

    4.) Medications--current, past

    I have been on Plaquenil for years. I also take the NSAID Naproxen. I also have treatments that are specifically used to treat problems I have from MS, which I was diagnosed with 1.5 years ago, but some of them have a bleed over effect on the Lupus symptoms, mainly IV Methylprednisolone infusions. I take Neurontin to keep pain from neuropathy under control as well.

    5.) Surgeries

    I've not had any surgeries for anything directly related to Lupus.

    6.) Complications then and now

    The big complication I had in the past was weight gain from steroids. I was able to lose all the weight and get back into reasonable shape. The Methylpred infusions I have now do not cause weight gain, but they do cause insomnia, nightmares/night terrors, agitation and a feeling of being on edge and unsettled. The NSAIDS sometime give me an upset stomach, and the Neurontin causes drowsiness sometimes.

    7.) What worries you?

    I've put a considerable amount of effort into not worrying about things, but there is always an underlying concern about some things. The thing that really worries me is the cognitive dysfunction. I have brain fog that is severe at times, and I find myself unable to even spell simple words or perform simple tasks. My short term memory problems subside when my current flare calms down, but I feel as though I lose a bit of memory permanently every time I have a bad flare and the brain fog that goes with it. I was identified in the 7th grade as being "mildly gifted", (a label I always hated), and I was put in an accelerated program which allowed me to recieve my high school diploma early, and as a result, I was able to start college early and get a good start on my career at a fairly young age. It was drilled into my head by my parents and teachers that this gift of memory was my best attribute and my "meal ticket", that it would take me far in life. My memory and ability to see spatial concepts as pictures in my mind gave me success in my former career, and is a central part of the hobbies I love. To lose memory, and have cognitive problems cuts to the very root of who I am as a person. To lose my intellect and memory is to lose my own identity, and that worries me to no end.

    Of course, having both MS and SLE has in the past caused me to worry about how much time I may have left in this world. How many years are these two monsters going to shave off the tail end of my life. I don't allow myself to worry about death anymore, it gets in the way of living.

    8.) Quality of life at this time

    Despite the effects of the two diseases, and the fact that I am on full disability and cannot work, I think my quality of life right now is really good. I have family and friends who care, I am in a healthy relationship with a lady who accepts the limitations SLE and MS place upon me, and I have hobbies and interests that are challenging and fun. I have my cats, and I live in a beautiful, and peaceful place on the coast of Maine, with the ocean in one direction, and green roling hills in the other. There is pain, insomnia, and fatigue to deal with on a constant basis, but I have learned to cope fairly well, and I do, most days.


    9.) Future treatments available?

    There are some promising developments in regards to future MS treatments, however, there is not much on the horizon right now for new and effective treatments for Lupus. Not yet anyway.

    10.) Relationship with physician

    I have a great rappor with both my PCP, and my Neurologist. I have no Rheumotologist at this time. I have not had many good experiences with Rheumo's. My last one made me so angry, I fired him quite vocally in front of an entire waiting room of people.

    11.) Support medical and personal

    I have good support from both my PCP and Neuro. When I was first diagnosed wth SLE, my fiancee left, friends stopped coming around, and my family was not supportive at all. In the years since, I have mended fences with my family, made new friends, and have a supportive and caring girlfriend. And, I have my friends here at WHL who are always supportive. Things are good.

    12.) Pregnancies

    Sorry, wrong plumbing.


    Good luck with your project Samantha, let us know how it turns out!

    Rob
    Last edited by rob; 03-07-2010 at 08:53 AM.

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    Funny Rob at number 12 lol
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

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