Base

Name

Lynn

Nickname

mrsdiggitydawg1

Year of Birth

1961

Gender

Female

Location

SW Florida

Relationship

Patient

Short Bio

I am a 60-year-old female suffering from various symptoms for approximately 30 years…long enough that you would think I would have a diagnosis by now…I do…not one…but many including fibromyalgia, osteoarthritis, migraines with and without aura, GERD, parathyroid hyperplasia, adrenal adenoma (4.1 cm, surgically removed), small parotid mass, idiopathic chronic constipation, infertility problems, depression, anxiety, endometriosis/adenomyosisetc.  My first symptoms I believe were visual in nature in my 30s, which prompted my first brain MRI, which showed a 1.0 mm unidentified bright-white spot in the white matter of the third ventricle “consistent with MS plaque or possibly neoplasm”.  Since then, I’ve had quite a few more MRIs of brain, C- spine, lumbar spine, sinuses, shoulder and coming up T-spine.  My symptoms pretty much sound the same now as they did 30 years ago as I kept somewhat of a journal, but have gotten worse and more added in just the last 5-6 years.  Most recently Most worrisome and/or bothersome to me include extreme fatigue, muscle weakness and droopy eyes, upper/lower extremity weakness (with very little activity outdoors), heat intolerance (sweat fiercely), tremors in all 4 extremities, flushing, getting choked a lot (mix of liquids and solids, i.e.,  cereal with milk, pepperchinis, and fruits like watermelon, apples), brain fog, low concentration/alertness, and I also have a difficult time drinking and eating and breathing at the same time as I seem to run out of breath while trying to do so or uncoordinated doing so.   Diagnoses still in the back of my mind aa possibilities include MS, myasthenia gravis and/or some form of MD.  Interestingly,  just recently found out that myotonic dystrophy, type 2, runs up the family tree starting with my great grandmother  (paternal grandpa’s side of the family) with a total of 12 of her descendants with the disease.  I was genetically tested (DMPK, I think?) but never had the results explained to me.  I just remember seeing “gene not detected” so I just threw it in my tall stack of medical papers to file, which keeps piling up because I hate filing lol.   So…I’m here seeking more information from the people who “know” things 😎. Thanks in advance for sharing information, your stories, and coping skills for what ails you!

How did you hear about us?

MuscularDystrophyNews.com

How long have you or the person that you are caring for had MD?

30 years

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