31840 full
ear214
Data Quality: 2 stars
  • Sex: Female
  • Age: 54y
Condition: Undifferentiated Connective Tissue Disease 14 additional condition(s)
Quality of Life:
  • Mental: Moderate
  • Physical: Moderate
I am: Neutral

ear214

Female, 54 years
AL, United States

Primary condition
Undifferentiated Connective Tissue Disease and 14 more
First symptom
Diagnosis
Interests
Advocacy, Alternative Medicine and 2 more
See less

About ear214

I was diagnosed with FMS in about 1995. Migraines since teens or early 20's. Also get recurring viral infections (ME?) and digestive probs. (sometimes severe pain). Over the past few years my brother and I were both dx'd (biopsied) with discoid lupus and told we had either SLE or Sjogren's by different rheumys in different states. He has also been dx'd with FMS. Strange, huh? In the last 2 years I've had facet injections and 4 epidurals for pain from spinal arthritis, shoulder surgery and started going to a pain center. Still not sure what kind of autoimmune disorder I have. The Rheumys around here don't seem interested in finding out or treating for it, even tho my QoL is obviously slipping away. Found a neurologist who seemed to care who ordered tests and found I had anti-MAG titers that might explain the peripheral neuropathy (MAG = myelin associated glycoproteins). But alas, he retired and I think the other docs Are waiting for me to fall down before looking into it. I had to stop working as a software developer jan. 2014 because I just couldn't handle the pain and fatigue any more.

I was about 28 or 30 when I started to realize that the way I felt was proabably not normal. I became friends with a co-worker with MS and discovered I had some of the same symptoms. Most of the countless visits with specialists I've seen over the past 20 years have been a waste of time, energy and money. The uncaring and dismissive attitude of some probably contributed to my illness(es). Things that help me today are my various meds, avoiding or managing stress, mindful meditation, warm baths, and listening to music. I dread all the Dr. appts., but want to get accurate Dx...not just for me, but for my kids. Some day maybe I'll just give up and quit going.

Activity

Profile: 4,078 views
Comments: 13 updates, 2 for others
Member since: Dec 09, 2010
Last Login Mar 04, 2015

Other conditions

  1. ADHD (Attention Deficit/Hyperactivity Disorder)
    First symptom
    Diagnosis
  2. Discoid Lupus Erythematosus
    First symptom
    Diagnosis
  3. Dysautonomia
    First symptom
    Diagnosis
  4. Fibromyalgia
    First symptom
    Diagnosis
  5. Herniated Disc
    Occurred
    ?
  6. Migraine
    First symptom
    Diagnosis
  7. Mitral Valve Disorder
    First symptom
    Diagnosis
  8. Mitral Valve Prolapse
    First symptom
    Diagnosis
  9. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
    First symptom
    Diagnosis
    Undiagnosed
  10. Osteoarthritis
    First symptom
    Diagnosis
  11. POTS (Postural Orthostatic Tachycardia Syndrome)
    First symptom
    Diagnosis
  12. Peripheral Neuropathy
    First symptom
    Diagnosis
  13. Sjogren's Syndrome
    First symptom
    Diagnosis
  14. Systemic Lupus Erythematosus
    First symptom
    Diagnosis