Hi, I am a 28 year-old mom. I’m pretty healthy except for these awful symptoms I’m having. I feel like I'm dying.
I’m 5’6’’ and 128 lbs. No family history of diseases (except for diabetes, Congestive Heart Failure, basal cell cancer, and aneurysm in my older grandparents) Over the past few months I have been having lots of different symptoms. Sorry in advance for how long this is.
1. Horrible muscle/ ligament pain everywhere. My muscles feel ‘sick’. Sometimes they itch and burn internally.
2. Lymph nodes hurt. Soreness under my armpits, in my neck, and lower back
3. Weakness/ fatigue in my arms, hands, feet and legs. Legs shake when I walk down stairs. Arms tire after very little activity.
4. Painful cramping/ contraction of muscles in hands, arms and legs
5. Painful shock-like sensations in fingers, hands, toes and feet
6. Muscle twitches
7. Joints always cracking and popping (ligament problem?)
8. Loss of flexibility and range of motion
10. Flushing with sweating, nausea, weakness, palpations, heart rate feels faster
11. Hypoglycemic episodes
12. Orthostatic hypotension, fast heart rate upon standing or sitting really straight in chair
13. Get out of breath from talking/ reading out loud.
14. Tender spot in lower left abdomen (Doctor felt it)
16. Get irritated easily
17. Excessive sleepiness
Do you think any of these could be the cause?
I was thinking about a dysautomia like ALS or POTS, muscle wasting diseases, lymphomas, diabetes, or Huntingtons Disease.
I have tried:
Myofascial massage and it made the pain 100% worse
Stretching and light exercise but it resulted in more pain and nausea
Taking a B complex multivitamin, but have felt no difference
My doctors have tried
My GP and Rheumatologist tested my B12, TSH, CBC, Lymes, Sed Rate, ACE, CCP, Rheumatoid Factor, CK level, Complement 3, Complement 4, SCL-70, Anti SM-Ro/La, B2GP1, ANCA, PSDNA, Thyroid Antibodies, Folate, Total Protein Electrophoresis, kidneys, and liver function through blood tests. All were good. My urine was good. Metabolic panel was good. I also had a clear ultrasound of my abdomen, a clear brain and cervical-spine mri w/o contrast.
They ruled out: Rheumatoid Arthritis, Lupus, Scleroderma, Sjogens, other connective tissue diseases, Multiple Sclerosis (even though the brain/ neck MRI was w/o contrast), CMV and Fibromyalgia.
• My Platelet count has been marginally low for a while (around 115)
• I had a complex cyst on my left ovary that has since went away.
• Positive Parvovirus B19, IgG at 7.0 but the IgM was negative.
• Positive EBV Early Antigen Ab, IgG at 126 (reference >120 positive)
• Positive EBV Ab VCA, IgG at 3168 (reference >120 positive)
• Positive EBV Nuclear Antigen, IgG at 646 (reference >120 positive)
• Negative EBV VCA IgM
• ANA is low positive 1:40 with nucleolar pattern
Most people have antibodies to Parvo and Epstein Barr though!
Does anyone experience these symptoms? What were you told?
The next tests my doctor is giving me:
ECG of heart
Diabetes Glucose and Fasting 3 hour Glucose Tolerance Test
Upper GI Flouroscopy x-ray
Abdominal/ Pelvis CT with contrast
If these are ok, she will order an EMG and nerve conduction study.
I am going broke from these tests :(