Thank you for this wonderful site. Whether I have Hughes or not, I’ve sure learned a lot by reading your posts.
I’m 46 years old and have three healthy children (full term), and had one miscarriage (12 weeks). I have always had bouts of crippling fatigue and migraines (ever since my teen years).
While in my late 20’s and while on birth control and doing lots of 8 hour flights for my job, I couldn’t walk 10 feet without having a tachycardia, I was in and out of the hospital at that time. The cardiologist, the internist, and the emergency room doctors all said I was healthy. One emergency room doctor even said that I was a type A high strung personality and that I would need to become a type B person (more laid back) and my symptoms would go away on their own. Essentially he said “it was all in my head”. Only my nutritionist truly listened and trusted what I was saying. My nutritionist said it sounded like thrombosis (my pains in my legs and chest, etc…) and he told me to go off birth control, eat more vegetables and less junk food, and to work out (exercise) every day. He saved my life. (Last year at the age of 45 years, I found out I was Factor V Leiden heterozygote and prone to clots when flying and with birth control hormones.)
My first neurologic symptom was at the age of 28 after the delivery of our son. Within a month of delivery, my leg started to go out (no feeling) and I would fall while walking. I would also have bouts off and on where I would sound drunk and slur my words. I went to the neurologist who said it was probable MS.
Since then crippling fatigue that comes and goes. Over the years I have had bladder issues, foot drop, feeling of bugs on skin (but no bugs), hot fire burning spot on skin (but cool to touch), giddiness, memory issues (foggy memory, slow processing at times, mixing up words (for example, I once said “nice to foot you” instead of “nice to meet you”) and when I start to mix up words I end up doing it twenty times during a conversation so instead I just stop talking. Last year I drove by a street turn 6 times because I couldn’t recognize it (3 blocks from my house while my teen daughter kept saying “mom you missed the turn again”).
I take regular low dose aspirins to control the pain in my heart, and neck, and left arm. I also have Meniere’s in my ears and Raynaud’s shows up in my fingers and toes on the cold days. Last year I developed the lupus butterfly rash on my face.
My current MS doctor doesn’t believe it’s MS, but still watches me. My MRI's show a few lesions (foci) of growing intensity in the white matter. I also have scar tissue in lungs likely due to pulmonary embolism (never smoked). Yet, the doctors have never caught a clot in action or saw a DVT in me on a scan. On the other hand, over the last year my blood tests have shown:
-my D-dimer test was high at 488,
-my prothrombin fragment 1+2 moab was high at 367 (like a high D-dimer, elevated F 1+2 independently predicts occurrence of VTE),
-my VLDL-3 (small remnant and the worst LDL) was high, and
-the most protective HDL-2 was low.
That coupled with my symptoms and that I am Factor V Leiden heterozygote and yet I’m still not on Warafin or any blood thinner other than the daily low dose aspirin.
Then last week while searching migraines (I was in bed for 3 days nauseous with a doozey of a migraine), I ran across an article that was titled “Migraine, Memory Loss, and Multiple Sclerosis Neurologic features of the antiphospholipid (Hughes) syndrome”. Wow, it described ME. I had never heard of Hughes Syndrome nor been tested for it before reading that article. Our 16 year old daughter has over the last two years started showing symptoms of occasional crippling fatigue, dizziness, and severe migraines (hospitalized several times) so I would like to find out what is wrong with me so that if she has it, she won’t go through decades of struggle.
I just had my blood tests this morning for antiphospholipid syndrome. Thank you for all the information on this site so that I was able to tell my doctor what tests I needed. My GP had never heard of Hughes Syndrome. I can’t wait for my test results to come back. After 25 years of symptoms, it would be nice to have a diagnosis and a course of action. I know some people are shocked by having the diagnoses. That won’t be the case for me. For 25 years, I’ve walked 3 miles a day and taken baby aspirins and given up meat because I know otherwise I end up bed ridden.
When a neurologic symptom comes up, I apply neuroplasticity. For example, when foot drop comes back, I change things up and walk backwards on the treadmill (slowly albeit). When my fingers start losing feeling, I do something new like pass the basketball around me. When I get a fire spot on my skin, I put an ice cube to the spot and my brain realizes that the spot is not really on fire.
I feel like I’ve done all I can on my own to fight to stay healthy, but as I get closer to menopause my symptoms are getting worse. It would be nice for the doctors to find that warafin or heparin would help. So I am patiently waiting for my test results.
Thank you again for all the great information in your posts. I feel like after 25 years of being on my own, I’ve finally found my group.