Advice

[Hollylewis]

Hi all,

I am feeling much better emotionally and anxiety wise.. I have met with my rhuematologist neurologist and GP..I am still trying to put this all together in my head.. My Drs think that it is a strong possibility I have APS but since I haven't had a major clotting event I will not receive anti coagulation. Is this a common thing? My neurologist is convinced that I had a TIA but my MRI/MRA was completely normal.. The weird headaches have stopped since the asprin was started as well.. I also am not suffering from any joint pain or other symptoms.. Just the livedo and tingling on my left side when I sleep. I am just concerned as I don't really know what to watch out for, the Drs are not so much helpful as they say not to worry? Any tips would be greatly appreciated.

[CanaryDiamond10]

Lucky you, Holly! If they are in agreement that you can be managed on aspirin you are very lucky. Acceptance is a step you just need to move through because you can't fight it. Acceptance and education so that you know what to expect and when to contact a medical professional.

I am lucky as well. My APS is managed on one 325 mg aspirin/day. Every once in a while I get a flare (like now). I tolerate the livido (it's really rather benign) forgetfulness, inability to comprehend simple things at times, excruciating headaches and the rest of my problems are due to other diagnoses. I try to be sensible with my diet and I really benefit from exercise. It hurts like heck first thing in the am, but once I do 45 minutes on the treadmill at 3.5 miles per hour (I am short legged), it lowers my blood pressure by as much as 50 points and my muscles and joints are all warmed up and stretched. I stretch throughout my day and do back exercises for some bad discs(L5-S1). I just work it in my day. Every time I go to the kitchen sink I use it as a bar and do 5 back bends (not too far) over the sink forward and 5 backward. If I remember to do it throughout the day I don't have nearly as much pain by the end of the day. Read the archives on this site. Just go down the column of questions and you'll find some of your own on there and the many different answers. Fellow patients are just a wealth of information. Keep a journal. It's important. It keeps you organized, vents your feelings, documents your medical record and you can track your pain and emotional state on a scale of 1-10 each day. Note anything unusual, like livido is increased today or decreased. I feel like I have the flu. It really just takes a sentence or two. But if your docs ask how long you've had the rash that isn't livido, you'll know exactly. Keep a list of ongoing questions so that you can go over them with your doctors during your appointment.

I'm so pleased you have some definitive answers, have a diagnosis and a plan of action. You are well on your way. Now just concentrate on learning about your disease. Good luck, Holly.

Warm wishes,

CanaryDiamond

[Hollylewis]

Canary,

Thank you for the advice it's comforting.. How long have you just remained on asprin? Did you have a "major" clotting event?

[CanaryDiamond10 in reply to Hollylewis]

I was diagnosed with APS about 2010 or so. Had a past medical history of autoimmune illness since birth, many miscarriages. The doctors said pregnancy was impossible for me. I divorced. I had thrombophlebitis during my 10 month pregnancy with emergency c-section. 4 years later we had another, healthy, repeat c-section to be safe. I was still not diagnosed with APS. I did not take blood thinners, even aspirin, during either pregnancy. (My "babies" are 32 and 28 now) They were both billireubin babies. They got their father's blood and had to be put under lights for a few weeks. I had a stroke at age 48 with the ultimate diagnosis of CNS vasculitis. The stroke left me with a severe stutter, right hand tremmor and flail, weak left side, loss of peripheral vision. They put me on 80 mg Prednisone a day till I gained 120 pounds (I am 5'-2"). They topped that off with Cytoxan chemotherapy agent, which fortunately put the CNS to sleep, but gave me bladder cancer, which I still fight. In 2010, when they found the bladder cancer is when my rheumatologist finally put together a complete medical history. At the same time, Prof Hughes was collecting cases with a particular set of symptoms in order to catagorize, name and make the medical community aware of this disease. He and his team developed appropriate tests and are in the lead, as far as I know, in research. That's really all there is to me.

I wish I had more than advice to give you. I wish I could take it away from all of us. Wouldn't it be some thing if we found a simple cure? It would make for a wonderful miracle.

Warm wishes and best of luck to you, Holly.

Canary

[Jade]

Well done you Holly being able to see a rheumy, neuro and a GP allin the week before Chrismas. Did you have to see them privately? I am curious what were your symptoms that led you to be already under a rheumy and a neuro if you just had a rash on your legs.

Glad to hear the aspirin is working so well for you.

[Hollylewis in reply to Jade]

It started 3 months ago when I have having migraines that caused me to loose my vision for a few minutes.. I then started to see a neurologist for that.. In November I saw my GP for a physical and she noticed the livedo and asked me of I have always had it .. I said yes and she said that I should see a Rheumatologist for it.. I did and thats when she tested for the APS antibodies. I live in Cleveland Ohio and go to the Cleveland Clinic and they have same day appointments for most things!!

[GinaD]

AHHHHH! Cleveland Clinic! Now I know why you received your diagnosis so quickly! Congrats! You have great docs. Happy new year! And if you ever come to vacation in Almost Heaven, maybe we could meet for that cup of coffee.

[Hidden]

I have all the antibodies typical for APS. I had migraines. Then TIA/stroke. Neurolog gave me 75 mg Aspirin. Better some years but after an operation for hyperpara I got worse. Lost my eyesight at the right eye for a couple of minutes and other neurological problems. When i started Warfarin I got much better. No dubble vision. I could read. I did not loose my sight.

Take care.

[CanaryDiamond10]

Holly, you are very fortunate to be at the Cleveland Clinic! It is one of the finest hospitals in the nation. You just can't find better. Dr. Calabrese is on staff there and he is the foremost doc on CNS vasculitis. I considered going there. It's the hospital you fly to when you are really, really ill. I hear they work actual miracles there. I have no doubt you will recieve the finest of care. If you get some good patient education print outs, share them with the Forum will you? I'm in the northern suburbs of Chicago. Good luck!

Warm wishes,

Canary