1. 49855 thumb
    KatB
    Data Quality: 2 stars
    • Sex: F
    • Age: 39
    Condition: Dermatomyositis 42 additional condition(s)
    Quality of Life:
    • Mental: Moderate
    • Physical: Moderate
    I am: vb
    I have:
    Dermatomyositis

    KatB updated the condition Dermatomyositis

    • First symptom:
    • Diagnosis:

    Will update after Sept 8th when I finally get all the answers I have been looking for, finally...

  2. 49855 thumb
    KatB
    Data Quality: 2 stars
    • Sex: F
    • Age: 39
    Condition: Dermatomyositis 42 additional condition(s)
    Quality of Life:
    • Mental: Moderate
    • Physical: Moderate
    I am: vb
    I have:
    Dermatomyositis

    KatB completed the QOL survey

    • moderate Social
    • moderate Mental
    • moderate Physical
  3. 49855 thumb
    KatB
    Data Quality: 2 stars
    • Sex: F
    • Age: 39
    Condition: Dermatomyositis 42 additional condition(s)
    Quality of Life:
    • Mental: Moderate
    • Physical: Moderate
    I am: vb
    I have:
    Dermatomyositis

    KatB completed the MSRS survey

    • MSRS: 35
    • Moderate disability that requires some help from others Cognition
    • No symptoms or disability in the specific area Vision
    • Aware of symptoms but no functional disability Speech
    • Aware of symptoms but no functional disability Swallowing
    • No symptoms or disability in the specific area Upper limb
    • Mild disability but not requiring help from others Walking
    • Moderate disability that requires some help from others Sensation
  4. 49855 thumb
    KatB
    Data Quality: 2 stars
    • Sex: F
    • Age: 39
    Condition: Dermatomyositis 42 additional condition(s)
    Quality of Life:
    • Mental: Moderate
    • Physical: Moderate
    I am: vb
    I have:
    Dermatomyositis

    KatB completed the Mood Map survey

    • Function
    • Distress
    • External Stress
    • Depression
    • Emotional
    • Compulsion
    • Anxiety
    • Mania
  5. 49855 thumb
    KatB
    Data Quality: 2 stars
    • Sex: F
    • Age: 39
    Condition: Dermatomyositis 42 additional condition(s)
    Quality of Life:
    • Mental: Moderate
    • Physical: Moderate
    I am: vb
    I have:
    Dermatomyositis

    KatB added a treatment evaluation for Ultram from

    • Perceived effectiveness for Fibromyalgia: Major
    • Perceived effectiveness for Chronic pain: Moderate
    • Side Effects: None
    • Adherence: Always
    • Burden: Not at all
    • Dosage: 300 mg Daily
    • Advice & Tips: Def recommend taking this along with Baclofen (for muscle pain/spasms) and Plaquenil (joint pain) for Fibromyalgia
    • Cost: < $25 monthly
    Def recommend taking this along with Baclofen (for muscle pain/spasms) and Plaquenil (joint pain) for Fibromyalgia
  6. 49855 thumb
    KatB
    Data Quality: 2 stars
    • Sex: F
    • Age: 39
    Condition: Dermatomyositis 42 additional condition(s)
    Quality of Life:
    • Mental: Moderate
    • Physical: Moderate
    I am: vb
    I have:
    Dermatomyositis

    KatB shared details about Ultram

    Stopped
  7. 49855 thumb
    KatB
    Data Quality: 2 stars
    • Sex: F
    • Age: 39
    Condition: Dermatomyositis 42 additional condition(s)
    Quality of Life:
    • Mental: Moderate
    • Physical: Moderate
    I am: vb
    I have:
    Dermatomyositis

    KatB updated the condition Asthma

    • First symptom:
    • Diagnosis: ?

    Been having symptoms since around March 2013, have gone to hospital from it. Supposed to be from my dermatomyositis that is causing it. When I am breathing at my best i was diagnosed with mild asthma. We need to test again in winter to show how bad it gets.

  8. 49855 thumb
    KatB
    Data Quality: 2 stars
    • Sex: F
    • Age: 39
    Condition: Dermatomyositis 42 additional condition(s)
    Quality of Life:
    • Mental: Moderate
    • Physical: Moderate
    I am: vb
    I have:
    Dermatomyositis

    KatB completed the QOL survey

    • severe Social
    • moderate Mental
    • moderate Physical
  9. 49855 thumb
    KatB
    Data Quality: 2 stars
    • Sex: F
    • Age: 39
    Condition: Dermatomyositis 42 additional condition(s)
    Quality of Life:
    • Mental: Moderate
    • Physical: Moderate
    I am: vb
    I have:
    Dermatomyositis

    KatB updated her weight for

  10. 49855 thumb
    KatB
    Data Quality: 2 stars
    • Sex: F
    • Age: 39
    Condition: Dermatomyositis 42 additional condition(s)
    Quality of Life:
    • Mental: Moderate
    • Physical: Moderate
    I am: vb
    I have:
    Dermatomyositis

    KatB updated her symptoms for

    moderate ModerateSwallowing difficulty (dysphagia)
  11. 49855 thumb
    KatB
    Data Quality: 2 stars
    • Sex: F
    • Age: 39
    Condition: Dermatomyositis 42 additional condition(s)
    Quality of Life:
    • Mental: Moderate
    • Physical: Moderate
    I am: vb
    I have:
    Dermatomyositis

    KatB updated her symptoms

    decrease better BetterAnxious mood, Balance problems, Bruxism (teeth grinding), Burning sensation in face, Chest pain See more
    increase worse WorseAcid reflux, Brain fog, Memory problems, Muscle weakness, Nerve pain (neuralgia) See more
    severe SevereAnticipatory anxiety
    moderate ModerateAvoidance of situations, Fear of embarrassment, Panic attacks, Sweating
  12. 49855 thumb
    KatB
    Data Quality: 2 stars
    • Sex: F
    • Age: 39
    Condition: Dermatomyositis 42 additional condition(s)
    Quality of Life:
    • Mental: Moderate
    • Physical: Moderate
    I am: vb
    I have:
    Dermatomyositis

    KatB updated the condition Fibromyalgia

    • First symptom:
    • Diagnosis:

  13. 49855 thumb
    KatB
    Data Quality: 2 stars
    • Sex: F
    • Age: 39
    Condition: Dermatomyositis 42 additional condition(s)
    Quality of Life:
    • Mental: Moderate
    • Physical: Moderate
    I am: vb
    I have:
    Dermatomyositis

    KatB updated her basic information

  14. 49855 thumb
    KatB
    Data Quality: 2 stars
    • Sex: F
    • Age: 39
    Condition: Dermatomyositis 42 additional condition(s)
    Quality of Life:
    • Mental: Moderate
    • Physical: Moderate
    I am: vb
    I have:
    Dermatomyositis

    KatB became a 3 star data donor! star earnedstar earnedstar earned

  15. 49855 thumb
    KatB
    Data Quality: 2 stars
    • Sex: F
    • Age: 39
    Condition: Dermatomyositis 42 additional condition(s)
    Quality of Life:
    • Mental: Moderate
    • Physical: Moderate
    I am: vb
    I have:
    Dermatomyositis

    KatB updated the condition Candidiasis (yeast infection)

    • First symptom:
    • Diagnosis:

    I've been treated first by an ob/gyn for it & after over a year of chronic infections she referred me to infectious disease & they or one of my primary care drs have been treating me for it since then. I think that was 2007 to present. I take 200 mg of Diflucan 1 time a day every day & if I miss even a day the infections come back. I also get it in my mouth as thrush almost everytime & usually right before I get vaginal symptoms. Yeast medicines that are used vaginally do not work at all. IN 1999, After having my daughter who was breech by emergency c-section & then 9 hrs later having an emergency hysterectomy that I almost died from & I requried several blood transfusions & they had to give me 2 types of blood. Then I got a staph infection in the hospital after I was out out I.C.U. for a few days, so I had to be reopened (without pain meds) & they had to leave my stomach open to heal. That almost killed me too & I was on 4500 mgs of clindamyacin a day for another month after I finally went home from the hospital. MY yeast infections didnt start until after that & they just got worse & worse over time, & they continue to become more resistent over time as well. I would have yeast all the time without my medication & with it I still get infections sometimes now.

    I also get chronic bacterial vaginal infections of two different kinds; however, not as often as the yeast. Basically, if the yeast starts coming back for any reason then I get or have a bacterial infection as well. So if I can keep the yeast infections under control then I can help control the bacterial infections.

    I also get recurrent, chronic uti's.

    I just did some research and also found out that patients both male and female who took Accutane, which i took 3 treatments of a very high dose of in 2003, now have all these same problems, chronic yeast, chronic bacterial infections, and chronic uti's. I think the accutane is responsible for damaging my immune system, just like all these other people believe. I am hoping that this new Immunologist will be able to help me figure out if that is true for sure. Infectious Disease dr referred me there before I found all this new info about Accutane being the cause. I do know my entire digestive system is messed up and that Accutane settled lawsuits over that and today I just found that it also damages the immune system and there are lawsuits for that below:

    http://accutane-injuries.com/immune_system_disorder.html

  16. 49855 thumb
    KatB
    Data Quality: 2 stars
    • Sex: F
    • Age: 39
    Condition: Dermatomyositis 42 additional condition(s)
    Quality of Life:
    • Mental: Moderate
    • Physical: Moderate
    I am: vb
    I have:
    Dermatomyositis

    KatB was feeling very bad

    I am in pain, really depressed, and frustrated that drs are not being truthful and or as helpful as they could be with my husband's care. Now as I am going thru my medical records and trying to enter in as much information as possible in patients like me for research and to help me track it in my quest to find out what else is wrong with me and to get disability, I keep finding out stuff my drs never told me like about the cyst on my liver or the endometriosis in my ovary and how I was supposed to followup with ultrasound 6-8 wks later but never did cause they didnt tell me too. Also wonder why after a hysterectomy they still gave me pregnancy tests each month for a few yrs....i mean, did that think i was lying about that? Really? I have scars from it and its in my medical records. Frustrated that disability hasnt said anything new lately....was waiting on a court date and my lawyer who i like, never returned my call and its been like 2 weeks. My insurance finally approved me to see a female dr....well a nurse practioner to do my meds and psychotherapy but disability doesnt consider them a dr so it wont help my case at all. Anyways, i still need to go but now that my insurance may chance my dr could change and i hate telling people stuff only to start over with a new dr. My first appt isnt even til May 27. My husband came down with an unknown neurological illness which caused the right side of his body to be parylzed and he has to learn to read and write etc again. He can only walk with a walker cause his right leg still cant hold any weight and he can barely move it. I believe he was misdiagnosed with a conversion disorder due to ptsd/stress which even his psychitrist doens't agree with, so im trying to get a referral to a neurologist that the base doesn't talk to first like this last guy. They are just trying to get him out of the military due to budget cuts as planned and not have to pay any disability. They made him go to work and sit at a desk all day when he cant barely walk with a walker and he's in tons of pain and the whole thing is bullshit. Now they are making him go thru more physical therapy to fix him since they say its all in his head basically. Sorry for ranting, im just beyond frustrated. He is our family';s sole source of income. I don't get child support for my daughter from her father and i am uable to work too, so its just a big mess.

  17. 49855 thumb
    KatB
    Data Quality: 2 stars
    • Sex: F
    • Age: 39
    Condition: Dermatomyositis 42 additional condition(s)
    Quality of Life:
    • Mental: Moderate
    • Physical: Moderate
    I am: vb
    I have:
    Dermatomyositis

    KatB added a treatment evaluation for MRI Lumbar Spine from

    • Perceived effectiveness for Diagnostic assessment: Moderate
    • Perceived effectiveness for Degenerative Disc Disease: Moderate
    • Perceived effectiveness for Bulging disc: Moderate
    • Side Effects: None
    • Adherence: Always
    • Burden: A little
    • Dosage: As needed
    • Advice & Tips: 11/18/2011 - MRI, L-Spine w/wo contrast. Clinical indication: Bilateral leg radiculopathy. Comparison: Lumbas spine MRI dated 5/11/2010 and lumbar spine radiographdated 5/11/2010. Technique: Noncontrast enhanced MRI of the lumbar spine with axial T1, axial T2, sagittal T1 and sagittal T2 sequences. Findings: Vertebral body stature is mantained. Disc desiccation is present at L4/5 and L5-S1. Bone marrow signal intensity is normal. The conusterminates normally at L1. Levels: L5-S1: No significant central canal stenosis or neural forminal narrowing. There is broad base disc bulge with facet hypertrophy. There is abutment of the left transitioning L5 nerve root. L4-L%: Borad base disc bulge eccentric to the left with moederate left neuralforaminal narrowing. There is no evidence for impingement of the transiting nerve root. Central canal is patent. L3-L4: Mild broad base disc bulge with no significant central canalstenosis. There is a mild facet hypertrophy. There is no neural foraminalstenosis. L2-L3: No significant central canal stenosis or neural foraminal narrowing. T12-L1: No significant central canal stenosis or neural foraminal narrowing. Impression: Multi-level degenerative disc disease. Detailed above, with abutment of the transitioning L5 nerve root on the left and mile to moderate left L4 neuralforaminal narrowing.
    • Cost: < $25 monthly
    11/18/2011 - MRI, L-Spine w/wo contrast. Clinical indication: Bilateral leg radiculopathy. Comparison: Lumbas spine MRI dated 5/11/2010 and lumbar spine radiographdated 5/11/2010. Technique: Noncontrast enhanced MRI of the lumbar spine with axial T1, axial T2, sagittal T1 and sagittal T2 sequences. Findings: Vertebral body stature is mantained. Disc desiccation is present at L4/5 and L5-S1. Bone marrow signal intensity is normal. The conusterminates normally at L1. Levels: L5-S1: No significant central canal stenosis or neural forminal narrowing. There is broad base disc bulge with facet hypertrophy. There is abutment of the left transitioning L5 nerve root. L4-L%: Borad base disc bulge eccentric to the left with moederate left neuralforaminal narrowing. There is no evidence for impingement of the transiting nerve root. Central canal is patent. L3-L4: Mild broad base disc bulge with no significant central canalstenosis. There is a mild facet hypertrophy. There is no neural foraminalstenosis. L2-L3: No significant central canal stenosis or neural foraminal narrowing. T12-L1: No significant central canal stenosis or neural foraminal narrowing. Impression: Multi-level degenerative disc disease. Detailed above, with abutment of the transitioning L5 nerve root on the left and mile to moderate left L4 neuralforaminal narrowing.
  18. 49855 thumb
    KatB
    Data Quality: 2 stars
    • Sex: F
    • Age: 39
    Condition: Dermatomyositis 42 additional condition(s)
    Quality of Life:
    • Mental: Moderate
    • Physical: Moderate
    I am: vb
    I have:
    Dermatomyositis

    KatB added a treatment evaluation for MRI Lumbar Spine from

    • Perceived effectiveness for Diagnostic assessment: Major
    • Perceived effectiveness for Degenerative Disc Disease: Major
    • Perceived effectiveness for Bulging disc: Major
    • Side Effects: None
    • Adherence: Always
    • Burden: A little
    • Dosage: As needed
    • Advice & Tips: 5/11/2010: MRI, Lumbar spine with and w/o contrast indication: History of lumbar disc procedures with recent flare of pain and progressive weakness od the left leg and paresthesias. Comparison: None., Technique: standard pre and post-contrast-enhanced MRI protocol o the lumbar spine was performed. Findings: Limited evaluation of the retroperitoneal structures is unremarkable. There is preserveration of the vertebral body height as well as alignment. There is possible partial laminectomies at the L4 and L5 levels. However, this is highly questionable. Disk desiccation and disk space narrowing was seen at both L4-5 and L5-S1 levels. Additional lytic type I changes are seen at the endplates about the left lateral L%-S! disk space. The T12-L1 disk space is unremarkable. At L1-L2 there is a normal diffuse disk bulge without evidence of neuralforaminal or central canal stenosis. A similiar finding is seen at L2-L3 as well as L3-L4 levels. At L4-L5 there is a loss of disk height and disk foraminabilaterally. This results in mild bilateral inferior neural foraminalstenosis without evidencce of nerve root impingements identified. At L5-S1 there is a broad based diffuse disk bulge which is essentric into the neural foramina where there is a disk spur complex. Mild inferior neuralforaminal stenosis is seen bilaterally. No definite nerve root impingement is identified. After tge administration of contrast there is slight enhancement of the right posterior aspect of the disk at this level, likely representing postoperative granulation tissue. There is no involvement orextension into the neural formina. Impression: 1. Postoperative changes at L4and L5 levels as above with evidence ofenhancing granulation tissue within the L5-S1 disk space. 2. Multi-level disk disease without evidence of significant neural forminalor central canal stenosis or nerve root impingement.
    • Cost: < $25 monthly
    5/11/2010: MRI, Lumbar spine with and w/o contrast indication: History of lumbar disc procedures with recent flare of pain and progressive weakness od the left leg and paresthesias. Comparison: None., Technique: standard pre and post-contrast-enhanced MRI protocol o the lumbar spine was performed. Findings: Limited evaluation of the retroperitoneal structures is unremarkable. There is preserveration of the vertebral body height as well as alignment. There is possible partial laminectomies at the L4 and L5 levels. However, this is highly questionable. Disk desiccation and disk space narrowing was seen at both L4-5 and L5-S1 levels. Additional lytic type I changes are seen at the endplates about the left lateral L%-S! disk space. The T12-L1 disk space is unremarkable. At L1-L2 there is a normal diffuse disk bulge without evidence of neuralforaminal or central canal stenosis. A similiar finding is seen at L2-L3 as well as L3-L4 levels. At L4-L5 there is a loss of disk height and disk foraminabilaterally. This results in mild bilateral inferior neural foraminalstenosis without evidencce of nerve root impingements identified. At L5-S1 there is a broad based diffuse disk bulge which is essentric into the neural foramina where there is a disk spur complex. Mild inferior neuralforaminal stenosis is seen bilaterally. No definite nerve root impingement is identified. After tge administration of contrast there is slight enhancement of the right posterior aspect of the disk at this level, likely representing postoperative granulation tissue. There is no involvement orextension into the neural formina. Impression: 1. Postoperative changes at L4and L5 levels as above with evidence ofenhancing granulation tissue within the L5-S1 disk space. 2. Multi-level disk disease without evidence of significant neural forminalor central canal stenosis or nerve root impingement.
  19. 49855 thumb
    KatB
    Data Quality: 2 stars
    • Sex: F
    • Age: 39
    Condition: Dermatomyositis 42 additional condition(s)
    Quality of Life:
    • Mental: Moderate
    • Physical: Moderate
    I am: vb
    I have:
    Dermatomyositis

    KatB added a new 25-Hydroxyvitamin D value for

    • 25-Hydroxyvitamin D19.8 ng/mL on
  20. 49855 thumb
    KatB
    Data Quality: 2 stars
    • Sex: F
    • Age: 39
    Condition: Dermatomyositis 42 additional condition(s)
    Quality of Life:
    • Mental: Moderate
    • Physical: Moderate
    I am: vb
    I have:
    Dermatomyositis

    KatB added a new 25-Hydroxyvitamin D value for

    • 25-Hydroxyvitamin D7.7 ng/mL on
  21. Show more