Not sure what else to look for.. help?
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I have a number of symptoms and have undergone several tests without identifying the root cause. Any ideas of things I can look into that may be causing my issues? My doc is saying just to treat the symptoms at this point.
Tested negative for:
• Lyme
• Rocky Mountain Spotted Fever
• ANA
• May Thurners Iliac Vien Compression
• Current DVT
Symptoms:
• Facial swelling
○ Swollen in the morning, resolving after an hour or so.
All over swelling, but especially around lips/mouth/tongue
• Fatigue
• Migraine
• Lightheadedness
○ Specifically when going from laying or crouching to standing too fast, but not just generally. I hear a swooshing sound filling my ears and feel lightheaded/dizzy.
• ITP
○ Platelet count usually 70-80, identified 10 yrs ago
• Leg swelling (left leg only)
○ Chronic leg swelling, worsened with activity. Compression stockings/elevation help some temporary but swelling returns immediately after
○ Not due to any known injury, but swelling for approx. 10 yrs
• Facial redness
• Eye dryness (sudden start 1 yr ago)
○ Hurts to open in the mornings, feel stuck; Feel tired and want to close them after opening
○ Left eye feels worse; Schirmer's test (8/9 left;12 right)
○ Fingers, hands, wrists, ocassionally other joints like knees
○ Hip pain (left side only)
Occasional deficiencies identified on labs:
• Ferritin, B12, Vit D
Medicine:
• Migraine- TrokendiXR (100mg/day)
• Platelet Support - Papaya Leaf Extract
• Birth control
• Vit D
• Vit C
• Vit B12
• Multi Vit
• Preservative free eye drops
• Tylenol (as needed)
Family history:
• Mom - Breast cancer, Brain annurysm, Headaches, Facial redness, High blood pressure
• Dad - Diabetes, High blood pressure
• Grandfather - Myasthenia gravis
Notables:
• Gallbladder removed
• Neuropathy in feet, but I believe this is a direct side effect of TrokendiXR
0 likes, 1 reply
PeterAK sadie32320
Posted
Being as your grandfather had MG, you may have an autoimmune disease or a component driven by an autoimmune disease. You could try what is called IVIG, it can be a general treatment for autoimmune diseases. It is very expensive and your doctor would have to do some fast talking to get it approved. If the treatment works you would have narrowed the possibilities for diagnosis and you would have a treatment till you get there.
If you do it, make sure you get the 3-5 day program, one week every month. When I did it in the beginning some things were getting better while others were getting worse . Also never do 5 days in a row, take a break (weekend) in the middle otherwise your BP goes nuts.
Whatever you do I wish you luck. The road you are going down is not easy, it took me 7 years and many doctors to get a diagnosis for my MG. I don't know what your circumstance's are but you might try going to clinic(s) specializing in rare diseases.