I went to the opthalmologist today for my six month check up. Optic nerve and retina still look good. Exam was normal except he said we need to do something more for the dry eye. He percribed Restasis. He wants me back in three months for another visual field test. He said that the fact that the visual field defect seems to me to be shrinking is a good sighn. He also looked at my eyes to see why I feel a paralysis like feeling while trying to look up. He said that my eyes are going up but with difficulty and attributed that to a weakened eye muscle. This has been going on for the whole two years but It is improved some, I think. Anyway this is the first time that he said that he seen it and I wondered why? My VA is 20/25. It was 20/20 then 20/30, and now this visit it is 20/25. I wonder why the fluctuation in VA?
The Hematologist took blood first thing and done a baseline test that came back in 30 min, and then saw me for the exam. He took a full history, First doctor who ever sat patiently and listened to all my history. He asked me why I was there. I told him to be checked for clotting risk factors to rule out previous strokes as the cause of the lesions in my brain. After he heard the family history with two young people having fatal blood clots, he said that is all I needed to hear. He said we are going to do the full range of testing to make sure you don't have this risk. THis is the list of the things he is checking for,
FACTOR V lied
PRO thrombro gene mutate
PA 1, ANA
Lupus anticoagulant, Anticardioip--a b
sorry if I mispelled some words but hard to read his writing. He said that my brothers sudden massive heart attack at 31 was unusual even for a smoker. After he mentioned the factor V , I told him that my brothers 25 year old son had been dx with this. He said that could have been what my brother had since it is inherited. He said that all of the test would probally come back normal, but he never lets a young person with that kind of family history who has unexplained illnesses to walk out of his office with checking to be sure. I told him that my neuro had already checked me for lupus and he said that is a different test than I am ordering. We also talked about my dx from the neuro. He said that the neuro has stated on my chart that MS needs to be ruled out, and list ADEM as the dx. He said I guess you know by now that your case is not the usual one. I said I kinda figured that out after two years. He said that ADEM is what they sometimes put when they don't know for sure what is going on. He said that the medication switch might explain the wierd symptoms but not the lesions on my brain. He said that sometimes after a patient has been tested for this long without a dx it is time for the doctors to step out of the box and start looking at everything. He also said that if I leave his office in three weeks without a dx then that is a good thing and he will then be able to totally exclude any blood problem cause.
Anyone got any feedback on what this Hematologist said or the test he ordered? I'm lost again!
Oh yeah this doctor is a hematologist/onocologist(cancerdoctor both.
Hey Santana! Wow, so glad this Dr is going to put your mind at ease, hopefully. Either way, you'll be able to rule in, or out some of these factors.
Although I was dx'd w/MS last year, a couple flags on some early lab tests have made me want to seek out a hematologist. How did you go about finding yours? Was it referred by your Dr, or did you do your own research.
Sorry I don't have many comments on the tests, although I have had the lupus anticoagulant run, this is the one that flagged on mine. The factors were never run on me as a follow up. Keep us posted!
I asked my neuro for the test to rule out clotting problems because of some family history. He ordered some baseline blood test but the lab could not read his orders. I just happened to have an appointment with my primary care doctor last week and told her what happened at the lab. She was going to go ahead and order the test but wasn't sure what the neuro wanted. So she said do you want to just go to a hematologist and a Reumatologist, I can refer you to both. I said yes that will be good. All of my doctors are at the same hospital which is one of the best in Tennessee. It is good to have them all there, that way they have easy access to eachothers records. By the time I got into the exam room with the hematologist he already had my neuro's records and I didn't have to send them to him. That was good for me because I am tired of chasing down records all over the place.
He told me that the lupus coagulant was not for lupus but thanks for explaining the difference to me, that helps a lot. Just keep pushing foward to keep narrowing the possiblities.
Some of the tests may be send-outs. Portions of the blood drawn may be sent to other specialty labs across the country. This takes time, and some of the tests themselves sometimes take several days to run. Good luck, and be sure to let us know when you get your results. Hope it's not an inherited factor for you.
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