I'm so frustrated I could scream! It's been months now and I have no answers!
It started in January, but like always, I ignored it for way too long. I have so many symptoms, it's hard to tell serious ones, from everyday aches and annoyances. Finally, my vision and concentration became so bad, I ran to my GP. I had also been battling daily migraines and nausea, but that's nothing out of the ordinary. I was diagnosed with depression and a UTI.
I was prescribed an antibiotic and Wellbutrin and scheduled for a six week follow up. After 6 weeks, I felt a little better, but not normal. My GP suggested an EEG and a follow up with my neurologist. I also stopped by my optometrist to get her opinion. She thought is was the Wellbutrin, but didn't think it was my eyes, due to my ability to clear my vision temporarily by blinking. My neuro couldn't see me for 3 months, so I scheduled with his nurse practitioner. That was a HUGE mistake! I have never been treated so poorly in my life!
She had no idea what Hughes Syndrome was and didn't even take the time to Google it! She let me know my EEG was normal and I should seek the care of an optometrist. When I told her I already had, she told me I needed a psychiatrist. I grabbed my purse and tried to storm out of her office, but as I was telling her off, she decided it would be a good idea to get the doctor.
The doc echoed her urging to see an optometrist (Does no one listen to me?) but also showed concern about a clot. He obviously wasn't THAT concerned as it took 2 weeks to get an MRI. In the meantime, I ran back to my GP to get off the Wellbutrin. He actually made me feel a little crazy at this visit too!
I am not crazy! I cannot see for more than a few seconds without getting blurry, I feel as though I'm in a daydream I can't get out of, my short term memory is non-existent and a good day is when my migraines stay at a dull roar. My MRI was Friday and I haven't heard anything of the results. I'm at a loss now for what to do. See the eye doc again? Find another specialist? Leave it alone and get used to my new, blurry lifestyle?
Anyone have anything similar?
Here's some quick stats:
-Diagnosed with APS in 2002 during IVF pregnancy
(Positive APS 2002 & 2005)
-Treated daily with 81mg aspirin
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LipsNClips
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Oh yes, I'm in the US. When I found this message board I was actually shocked to discover people over the pond are taken seriously with this disease, as I have never been. I was told there is one APS specialist in my state (Indiana) and was given a referral, but the doctor (rheumatologist) refused to see me. Apparently he doesn't like working with my insurance company. I feel frustrated, let down, angry, and yes, sometimes, I feel crazy!
I'm sorry you are going through so much. Somehow you've got to get to the right doctor. It took me a long time to find someone that would really try to solve my issues. I now have a hema/onco that is working very hard to solve my issues.
As I was leaving his exam room today I thanked him for working so hard to try and help me and to figure out what is wrong. I told him, "You don't understand, half the battle is getting the right doctor".
Please know that you and your battle are not alone. It seems like it is a "crazy normal" to have to go through this.
I was diagnosed by Dr Winkelmann in Northern Ky, across the river from Cinn. Don't know where you in IN, but that drive may not be too bad.
A suggestion-- have you asked your insurance company for advice regarding a hemo or rheumy who knows about APLS?
My ophthalmologist in Huntington WV, Dr Francis,, knows about APLS and has paid close attention to my pre- diagnosed leisons in the visual cortext, and also scrutinized me carefully during check ups for bleeding anomalies. The drive from Indianapolis to Huntington looks to be about 5 hours.
My insurance is Anthem Healthy Indiana Plan so it will only cover doctors in Indiana, but I appreciate the leads. I had the name of a rheumy who specialized, but he absolutely will not work with my insurance. I asked about out of pocket expense. His office visits start at $450. They also said they would need to rerun all my labs which gets us into the thousands. Yikes! Not in my budget!
Anthem advised me to use the "online provider finder tool" on their webpage. LOL! It's completely out of date, so even when I call the providers on the list, their receptionist tell me they don't accept my coverage!
At this point, I've been trying to find doctors on APS websites and then cross reference them with my provider list. So far, I've found one! I'm calling soon to see if they will accept me!
After causing a scene at my neuro's office and telling his nurse practitioner where she could shove it, I know I can't go back there anymore. Whoops! Lesson learned!
I was forwarded you note as I live in Dayton Ohio which would be close to your Dr. Winkelmann in Northern Ky, as you say across the river in Cinn. Can you kindly provide any further information about him?
Got your note here. I moved from his practice some 5-6 years ago, so I'll have to look up info, which I will do later this afternoon. Right now, just got home from pizza lunch and it's nap time. I'll send info soon.
UPDATE: I still have no results from the MRI. No news is good news, right? I called today for an appointment with a specialist I found on apsfa.org. My insurance is accepted and the appointment is next week!
I hope I'm not setting myself up for disappointment, but I'd really like to have clear vision again by the end of the month!
Finding the right doctor is more than half the battle! I actually considered my sanity a time or two. The dizziness was my main problem. Searching for words, always feeling confused, sensitive to brightness/crowds/movement,and lets not forget the migraines! Yikes they were miserable. Once I found the right doctor and started medication I knew I wasn't crazy just had clueless doctors. I found plaquenil and amitriptyline gave me the fastest relief along with aspirin. There are doctors out there! Keep looking. I found a rheumy and a neuro in my Texas town that specialize in APS/hughes. Best wishes to you in your search.
Thanks so much, Kathy! I've had all those symptoms for years but they would come in episodes and then be gone. I didn't realize I had a sensitivity to brightness until I read your comment, but I'm completely annoyed by bright lights.
I might actually go crazy if I can't get some relief! I feel like I'm faking my way through daily activities so people can't tell there's something wrong with me. The other day, a client noticed tremor in my hand and I was mortified. I should clarify, I'm not ashamed to have APS, but as a hairstylist, I don't think my clients would be comfortable knowing I can't see and my hands aren't steady. Lol!
So many symptoms I had no idea were related came out over the months of reading the posts. I can hardly go to my hairdresser. The whole environment makes me dizzy. They have florescent lights, ceiling fans, high noise level. Everything that makes me want to scream I have to hold on to the chair. Even if you can get your GP to try plaquenil on you I believe you will start to feel better fast. Start aspirin and B, D, and C vitamins. I take folbic for the B by prescription but you could start with OTC now. My hematologist said the D (i take 2000iu) was also beneficial in APS as well as C (500mg). I will keep you in my prayers.
I've been taking my D. GP only wanted me to have 800iu but I had 1000iu so that's what I'm taking. So far he said no to plaquenil, but I'm gonna try again with the specialist this week. Been diligent to my aspirin...in fact, been treating migraines daily for way too long, so I'm getting quite a bit! Probably wouldn't hurt to throw some B and C in the mix! Thanks for the suggestions!
I hope you start feeling better soon! I step back and forth all the time too. I start to feel better, then push myself to get life caught up again and over-do-it. I decided this weekend I would charge headfirst into the land of the living...after work yesterday we went to a gathering. Left with a migraine! Grrr! Now I'm on the sofa watching old movies. Lesson of the weekend...learn to ration my energy!
omg omg! i thought i was the only one suffering from this condition please please please contact me as soon as possible i really want to talk about this: Please private message me, so we can swap contact details.
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I have to hold on to the chair. Even if you can get your GP to try plaquenil on you I believe you will start to feel better fast. Start aspirin and B, D, and C vitamins. I take folbic for the B by prescription but you could start with OTC now. My hematologist said the D (i take 2000iu) was also beneficial in APS as well as C (500mg). I will keep you in my prayers.
Hoping for a diagnosis
Recent APS diagnosis and eye issues
Maybe the hematologist thinks I'm crazy? Appointment did not go well.
dreaming and the onset of autoimmune conditions
Not sure if numbness is from the APS or from issues with my neck
