Well, after years of complaining of a severe headache, slurred speech, dizziness, staggering, blah, blah, blah (and being sent to the psychiatrist because of course I was making it all up to cage for narcotics) my wonderful new primary I have been raving about for the past few months ordered a brain/head MRI today. This is because when I went in for a voluntary field vision test a few weeks ago before starting Plaquenil (of course the rheumy didnt suggest it), I had sudden, episodes of left eye blindness. Great. Anyway, the wonderful MRI tech today said it sounds like TIAs, which I am reading can be brought on by lupus, so every day, my own research gives me more explanation than any medical doctor has the time to figure out. You have to be your own medical doctor when you have autoimmune disease, the MDs just don't have enough time to deal with it all.
My fillings hurt like heck though LOL.
Oh dear. It's true you have to become your own doctor with these diseases. Fortunatly where I live that is encouraged and I've been given a lot of resources through the medical services.Did the eye exam detect the left eye blindness or did you report it to the doctor at the time of the exam? When is the MRI scheduled?
I'm glad they are sending you for the MRI. Hate you have to have one; but it needs to be done so you can get some answers.
I'll be anxious to hear how it goes.
Lovie - it happened during the field vision test. They did the right eye first, np. They fitted the little scope to my left eye and I immediately went black blind in the left eye, and the test hadn't even started. It was bizarre. I had the MRI about five hours ago. My husband was ecstatic, its the first medical doctor to examine my head biology, not psychology. LOL Let us know what the results are. I am happy you finally have a great doc that is looking out for you.
Any idea when you'll get the results? That's troubling for sure. Did the eye doctor shed any light on the subject? Did he have any idea what might be causing it.
Has it helped any of you (Plaquenil) I have so much pain all the time and I have been on it for 6 months nowThe Plaquenil has been fantastic for me - inflammation is down, joint and muscle pain down, and I had to fight the rheumy to prescribe it after a second opinion from USF Tampa. But I had been on quinine for a year previously, so that might be one reason it kicked in so fast. After reading everyone's posts these past four months, I think that everybody has to find their own combo of drugs that works while our disease is in one stage, then have to modify when the disease shifts. But that's just in my opinion, what do I know?
The eye doctor sent me a letter and here is the list of possibilities for the left eye blindness, and none are good: possible vascular compromise of either: severe carotid occlusive disease, temporal arteritis, vasospasm; or micro-occlusive vascular disease (hypercoaguable state, platelet emboli); or compression of the ophthalmic artery/optic nerve by a mass lesion or infiltative process. Oh joy. Thanks for the concern everyone ~~ Cathy
I had an MRI when I had the stroke. They are now calling it a "mini stroke" - that sounds much better! I also had a face MRI done and neck when I was complaining about hearing chains. I learned I have a very deviated septum in my nose. Very little opening on one side. He said surgery but I don't think so. I can live with it. He also said the nerve problem in my neck, I should wait on that as neck surgery can be very risky. The cool thing was he gave me copies of the MRIs. Most doctors are so stingy with your personal info. It is such a relief to have MRI done on your brain. Just like a chest xray. Did you get copies of your MRI? The face MRI was the coolest
The blindness is scary Cathy but don't jump to conclusions. Who knows what it is. House would figure it out
Cathy - what is rhupus?
Take care.
I am officially diagnosed with Rhupus too. It is RA and Lupus, when my Rheumy first told me that was what we're dealing with, I thought it was some cute little name he made up, but no, it is an official dx.
I sure hope you get results soon. Problems with eyes can be scary, but hopefully it's simple inflammation. I wish you the best sweetie, hang in there!!!
Thanks for all the nice posts everybody - the blindness (which only happened during the test) was really a wakeup call to me. It's supposedly only a few days for results, so I am sure on Monday I will get a call that it was "normal" (my tests are always normal, well, except those 150 RA factors), so it will go down as one of my infamous "we have no clue" episodes.
Rhupus? I got that one when you go get a second opinion and two rheumatologists collide. It's when you have RA and lupus, or "Occasionally patients with overlapping features of rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE), termed "rhupus," have been encountered." I think its just another term for "we don't know". LOL I am still fixated on this "palindromic" rheumatitis aspect. It fits me better than anything else I have found so far. Take care everybody, maybe I will get to wear an eye patch along with my black hooded cape and purple cane :)
Cathy -
Did anybody mention uveitis? Hope I spelled that right.
Hugs,
Pip
Pip - thanks for the tip. The MD did a thorough eye exam before the test, and the tester called him back in after the left eye field vision test was finally over (I was almost puking and was weaving down the hall hitting the walls as I left as my balance was so out of whack), and he re-examined me, and said he could see nothing wrong with the eye itself. But I will definitely add your tip to my long list of questions for, well, I guess myself.
This MD opthamalogist is the one who examined me almost two years ago, sent a letter to 1st rheumy I saw, and suggested MCTD, but he diagnosed me with allergic conjunctivitis and recommended warm compresses. It was Sjorgens in the eyes, and I finally returned a year later (a few months before my RA DX) and said this compress idea ain't working on these bone dry eyeballs, and he prescribed some eyedrops for allergies. I do like him alot and he is being very helpful with my new primary.
This 1st rheumy is the one who REFUSED to even TEST me, and said I needed to go to a psychiatrist because I was faking my symptoms, this after about a 20 minute conversation, with my husband in the room with us. I didn't even know this had happened (he didn't tell us he wouldn't test me or go to the psychiatrist, he just said there was nothing wrong with me and left the room) until I requested a copy of my records for when I finally was told by my super secret cash medical doctor 100 miles away (2 years later of being sick with my faked symptoms) to go see another rheumatologist for my symptoms. (This super secret MD also put me on Lexapro and Clonipin before I went to my current rheumy because he said rheumatologists wont see patients unless they are on depression medication first, go figure that one out).
My husband was at this appointment with the first rheumy and we are still in disbelief - his written report and what happened in the room is fantasyland. So then I tried filing a complaint against him with the State of Florida, but they closed that section to the public after 911 and denied my complaint via an 800# call in, with no investigation nor documentation. I really really really hate the AMA. I am two years behind in my DMARDS because of this rheumatologist stepping outside his practice perimeters and practicing psychiatry instead of rheumatology. I probably should hire an attorney, but the ABA will get him off.
Okay, I feel better now, thanks for the rant time. Cathy
Cathy-I hope you are able to get some good feedback from your MRi. It is so crazy how hard it is to get some of these tests done! Hang in there. let us know what you find out.
Take care
Tara L
Hi Cathy, I will say a little prayer for you today as I know you are truly worried, hang in there kid, its just another milestone on our road of discovery and pain! Kind hugs Janie. Thank you Tara, Janie, everyone - is no news good news? This is when I wish I could go jogging on the beach to clear out my head, but those days are long over.Cathy,
have you ever talked about Bechet's Disease with your doctors
Buckeye - that's where this all started. The neurologist (because I was having slurred speech and stumbling around) sent me to the first rheumy for possible Behcet's, and the rheumy went NUTS on me amd my husband and said I was crazy to think that - then he walked out and sent a letter back to the neurologist saying I needed to see a shrink. I went to this recommended rheumy because my NEUROLOGIST suggested it, not that I thought I had it. Anyway, he refused to test me, said I was crazy, didnt have Behcets from TALKING to me, then 2 years later I went to a different rheumatologist who thankfully tested me and my numbers were skyhigh for a number of conditions which are partially in my signature block. Come to think of it, I don't know if I was ever tested for Behcet's, is there a test for it? Thanks - CathySo, I called the MRI place a few hours ago, who said the results should have been given to me yesterday, and was surprised I hadn't been contacted. So I called my primary and left a message asking for the results, and still haven't heard anything. So I give it a 50/50 chance of getting a call back. I will probably have to do a records request to get an answer.When my doctor didn't call me back right away once this nurse gave me the results. She gave me the basics and the doctor called me back the next day. She knew I was on the edge of my seat and so I guess I got lucky. Rarely will they do that. It should be fine if you say it's fine though.....their YOUR results.
I know you're anxious. So am I. I've been checking back to see if you've heard. I'll continue to do so.
Hope it's soon. I know the waiting is hard. Hang in there.
Well, I had to call again, but my wonderful primary just called and said the brain MRI was absolutely, perfectly normal, which is unusual, because they usually find some sort of sinus deviation, some sort of little weird malformation, and my head and brain are perfect. Whew. Guess that explains the left eye blindness :) Actually, its a big relief. We had a huge talk, I am switching to the rheumatologist in her practice to try to pin down a true rheumatology diagnosis instead of this up in the air "we don't know" situation, and we will now explore the blindness since it was transient as either TIAs from the lupus or a circulatory problem from the heart. It's always something. I really, really, really like my new primary. Thanks for all the support, thanks Lovie.
I think switching dr.s sounds like a good idea. Hopefully they'll be able to offer a little better explanation.
That's so mysterious. But now you can tell people you have a perfect brain! Thank God it was clear love JAnie. I'm happy that your mri was normal and you have a primary doc you like!. Your other rheumy sounds like he should not be treating anybody. I hope you get answers soon.I am so happy your test came out perfect. If some of this weird stuff happens again keep reporting it to your doctor. Glad you feel better with the news.
Thank you everybody - we really do pull for each other in here. And now that I have a perfect head and brain, well I could become really outspoken or something :)
I see the new rheumatologist Friday - the new primary was relieved I brought it up, because of course she could not. We need to get some answers, not this infighting over medical turfdoms. One problem has been that one doctor pulled a single strand DNA test for lupus and it came up positive - and the doctors are fighting over the fact that this is an inconclusive test, its a double dna strand being both positive that proves lupus. So I asked the primary today, why doesn't someone order up the correct test then? It's only been 18 months of debate over whether a positive single strand positive DNA really means I have lupus or not. Nuts, dangerous nutbags. I won't even get into the weak titer for scleroderma meaning do I or don't I? Double dangreous nutbags.
Again, thanks for all the kind words of support ~~ Cathy
Makes sense to me.....order the double strand test! For crying out load!!
It honestly amazes me how much smarter we are than them Whew glad the mri was good!!
Cathy -
Congrats on the clear MRI. Did they ever check you for uveitis? Am I spelling that correctly?
Lovie -
That's what I say! LOL
Pip
Pip - I have uveitis saved for my six month recheck with the opthamologist for the Plaquenil. Plus I get to do another field vision check, so we shall see how the left eye blindness goes. And tomorrow I start with a new rheumy. Only took me a half an hour to update my six-page history of highlights I started working on a year ago, and the doctors love it. One said it was as good as a medical student would do. Great, can I get diagnosed now? LOL Take care Cathy Let us know what the new rheumy says. Cathy, Good to know that the MRI, show that there was nothing wrong in the brain & head Dept!! I wonder many of us would pass that test - not me anyway Seriously though, it IS great news for you. And also good that you have managed to change to your new RH. Good wishes your way!