I am a 31-year-old female high school teacher on the Island of Maui in Hawaii. In the past ten months I have developed serious symptoms that have baffled several specialists, including my neurologist, who is currently working me up for MS.
My degenerating condition (which includes loss of feeling in my right foot and stiffness/numbness in my hands) confused me as well…I have no history of significant health problems, other than 3 unexplained miscarriages at different stages and teenage migraines, which were totally absent in my 20s but have now returned.
Over the past year, the lymph nodes in my neck have swelled and remained- two are around 3 cm, and an FNA biopsy showed no evidence of malignancy; merely “inflammation.” I’ve also had abdominal and pelvic ultrasounds, (which only showed a small hemangioma in my liver) a colonoscopy (because of an episode of bloody diarrhea,) MRIs and CT scans of my head, and an ultrasound of my thyroid…nothing alarming…
So-I relaxed a bit even though my right side inguinal nodes also remain enlarged and painful.
However, This summer I began experiencing extreme fatigue and serious pain once the school year began. Then my joints started popping…at first this was comical; my students started calling me “Ms. Snap Crackle Pop.”
It began to worry me though as my discomfort and fatigue increased. I have frequent UTIs and irregular, clotty periods.
Then my vision started blurring- I’d always had excellent eyesight, but now have several “floaters” in my right eye which seem to come and go. The final straw was when I realized how difficult typing (essential to my job) had begun due to the pain and stiffness in my hands.
I feel almost intoxicatingly unfocused at times and in September, I asked my psychiatrist to increase the stimulant I take for ADD, and voiced my frustration to him about my family doctor, who refused to refer me to a neurologist and (still) seems to think I am merely suffering from panic and anxiety-
My psychiatrist, who knows me well became concerned and referred me to the only neurologist on Maui- who is now in the process of the workup for MS. The only clinical finding he’s seen is an absent Babinski reflex in my feet.
However, in the past 2 months my veins have swelled and I’ve noticed a purple and white fatty hamburger looking discoloration of my skin- my right foot (the numb one) is constantly purple and cold, although they both cause me significant pain, as do my arms- but the worst of it is in my groin down the leg, and left side of my neck, where one vein is usually visible. I have red bumps under my skin, over pale areas, and very visible veins and capillaries.
Anyway- a few weeks ago I did what I promised I wouldn’t and googled my symptoms….
I had never heard of Hughes Disease or APS, but decided to take an extra strength Bayer aspirin tablet. Within an hour, I began to feel better and the circulation in my foot abated a bit. I took another and by lunch I felt as if someone had performed an exorcism- the pain was gone- I could feel my foot and the purplish-white rash was literally disappearing. I took 2 more that night and several the next day- I could not believe how much better I felt, and even my vision cleared up.
Excited, I went to my family doctor, and told her about the Hughes syndrome, my history of miscarriage, and the seeming disappearance of my symptoms with the aspirin. She told me she’d never heard of it (neither has my ENT) and refused to send me to a hematologist, because my CBC and SED rate were fine a month before.
I begged to see a rheumatologist, citing the lingering swollen nodes, and I have an appointment on the 11th, thank God.
My only concern is that now I feel as if I should stop or wane the aspirin treatment now so my visible symptoms return in order to show the rheumatologist. Otherwise I’m afraid he won’t take me seriously.
I’m very worried, however, because I tried this yesterday and my symptoms flared like a banshee- the vision problems, confusion, and severe pain, especially in my right leg and neck- were back with a vengeance.
Does anyone know of a good doctor in Hawaii that might be aware of this syndrome? I also have family in Rochester, Maryland, and Washington DC- who have all offered to take me to appointments there.
I am not overweight and appear “well” to doctors….I never used to ruminate about my health; now I’m worried about a stroke or DVT.
I am desperate at this juncture- I’m unable to work, and spend hours in bed. I used to run and swim several miles each week, but now cannot manage to walk my dogs for more than five minutes- My principal and fellow teachers have been incredible supportive and even donated sick days, but I miss my students, and my former life.
My apologies for the very very long post…It’s my first on any blog or health board.