Hi camama, I had typed in a response to your post earlier, but it apparently didn't go through.
I am nearsighted, but have been having difficulty reading up close for about 3 years now. I'm 38, so my problems also started at 35. I went to an opthamologist on Friday because of the plaquenil my rheumy just started me on, and I remember being very excited that the magazines in the waiting room were all in large print! I thought to myself, jeez, I must be getting old to get so excited about that :)
Correct me if I'm wrong, but you are currently taking plaquenil, aren't you? If this is a recent problem, be sure to follow up with your opthamologist (if you haven't already) just to rule out any effects the plaquenil may have caused.
Don't know about the brain fog thing, but I can certainly empathize with you as I've had issues with that in the past. It appears that I'm much sharper and on top of things since I've been on the enbrel, so perhaps my brain fog thing related more to fatigue than anything else. Keep an eye on it, and make sure you talk to you rheumy about it.
I am 36 years old (almost 37) Had dementia two years ago. They gave me two years to live because they thought it was Alzheimer's and my kids were taken away. Needless to say, it wasn't Alzheimer's. I have been having transient ischemic attacks (TIAs). Lost 80% of my memory (brain damage to my left temporal lobe and subcortical regions). I couldn't do math and had problems speaking. Confusion, migraines and dizzy like symptoms preceded the onset also. Anyway, a year and a half later I kept losing my vision for a second or two. I went to an eye doctor and was told I lost my peripherial vision and that I had a blood clot. Eventually, they figured out that I was having mini-strokes or TIAs. I am not saying this is the case for you, however, you may want to have this possibility checked out. After this diagnosis, the found out I had Lupus and finally seriously tested me for this. I have had problems with my other organs prior to this and since this diagnosis. Even now, they still aren't sure if this is the correct connective tissue diagnosis because I now have skin and joint involvement that may correspond more to a mixed tissue or overlap disease.
How severe is your liver? Mine just swells and is sore. Same with the spleen. But thankfully nothing major yet. The liver inflammation was one of the first symptoms but no one ever attributed my mental fog, etc. to the liver. Have you talked to the rheumy? You may request that you follow-up with a neurologist or a neuropsychologist. These are the two who helped me with this issue. Best of luck - Kris
Thanks everyone for replying, though some of this sounds so scary!
I did go to the opthamologist in Feb for Plaquenil. I think I will call him tomorrow and see what he says - I'm not supposed to return until October, I think. The bummer is, I have to pay $25 co pay to see him when I have a free vision care visit still coming to me this year, but I have to see an optomitrist for that...I wonder if I could see him for starters....probably not smart, I guess. My opthamologist said he has never seen a patient w/probs from plaquenil - but I have (unfortunately) surprised and stumped doctors before.
My last check for Lyme's was definitely 4 years ago and I may have been checked as recently in the last 2 years. I guess I can have them check again. I finally made the switch to the clinic near my home and see the new rhuemy next Tuesday. I wll talk to him then about these issues and my Lupus concerns. Since my last rhuemy "tossed my file" (i haven't seen him since then, I think) I don't know if the new guy will have all my recent lab results (same practice, differnt clinic.)
Kris, what a horrible story - I'm intrigued to hear more. How did you get demetia? How did you get through it? Did you get your kids back? Is your memory back? My liver and spleen have not been the same since an acute case of Mono/EBV 3 years ago (I was taking methotrexate at the time which didn't help.) It flares, enzymes go high, I have painful reactions and get very foggy in the brain, so tired I feel like I have mono again, constant naseua (I can't spell that word), etc. It affects my sugar now as well. I've put on a LOT of weight and that compounds the problem. Loosing weight is extremely difficult because with all that has happened, my metabolism is messed up - the doc wants me to start a super strict plan, and I think the writing on the wall is telling me to get on it NOW before I regret it even more.
Sorry, I didn't mean to scare you. I just wanted to make sure you relay all your symptoms to your doctor. For 8 years prior to having the dementia, I had symptoms of hemipeligia, hemiparestesia and imbalance along with severe migraines. The dementia, doctors believe, was caused from a small stroke. Got through it like everything else - kept active, kept challanging myself and took everything one day at a time. I am naturally like that so even though I didn't know much about what was going on around me, my true personality pushed me through. I did get my daughter back, however, my son still lives with his father. Almost all of my memory came back, some of my math skills and word recall came back and my speech is good now. It took two years to recover, but I consider myself lucky. I have EBV at a very high level also. It has been that way for years. I don't think it has much to do with what I am going through. Just another odd bloodwork result. My daughter had EBV in her blood since age 2 and she is just starting to show signs of Lupus. Maybe coincidental, maybe not. Again, some of these things we go through are creepy but hopefully the ideas you get here will help prevent you from suffering more. Remember they are just thoughts or ideas, everyone is individual. But it is sometimes worth the look. Take care and I hope you get your answers soon. - Kris
Well, I haven't had to do any math in a week or so! I'm trying to rest my eyes as much as I can and I started taking some allergy medicine (just to see if that is a factor in sight.) So, we'll see. Though there is slight (I mean slight) improvement on the up close, I still can't focus very well and need to pull things much farther back than I'm used to.
I think I might just go to the drug store and try on some reading glasses. I think they are just a couple of bucks and may be the cheapest and easiest route for now if I find something that seems helpful.
Overall, knock on wood, I'm not doing too bad. I have some pains and complaints, but I'm taking it easy (and dealing with the build up mess in the house when it gets bad, though hubby hates it as do I), trying to not stress, and just taking life one day at a time. My job is going well so far, I'm still able to stay stress free - not sure how much longer that will last. It's been a long time coming to get to this point, so I need all the prayers, wishes, good thoughts I can get that maybe I can finally FINALLY start (albeit slowly) move forward with my life and enjoy those around me rather than being engulfed in extreme pain, bedridden by acute illnesses, and therefore wallowing in self-absorbed depression. It's been more than 10 years and I've had enough. I'm so scared to look forward and be happy about the job (I've had to leave the last 3 due to illness) and think about planning life with the assumtion I'll be healthy - but I know negative thoughts and fears are not good and I can't live my life in fear any more. I need to stay positive, be smart about my actions, and pray that I've done my time and have learned what I needed to learn and can move forward after such a long time. I've felt like I was so close to recovery before and was shot down by ill health before I barely finished the happy thought, that it's hard to be anything but nervous and scared about anything.
Okay, enough sad thoughts...I am going to finish up here and go back to my family and hug my kids.
Being positive, thinking smart and praying are the best remedies to see you through this. Keep up the good attitude. The worries will always be there. No sense in worrying about things until they happen - waste of time, effort and precious energy. All things you need to recover with. Don't use up your resources if you can help it. I tell myself... whether the job is there or not, I can and will deal with it. The only thing worrying is going to do is help me to lose my job faster. Definitely not the goal. I know what you mean though. I finally found a job I love and feel blessed every day for it. Just say thank you and carry on. You have today. Head up, eyes forward, is what I say. Have a good day! - Kris
Thanks a million, everyone...so far, I'm taking it extra easy on my eyes....doing my best to follow suggestions from eye doctor, getting rest (breaks at work), trying various tacticts....and most of all trying not to STRESS about anything. Just keep reminding myself....life is good if you dont' stress or worry.....My daughter loves me to help her meditate now before bed (she's 6, but very high strung!), so we are trying to do that at least a few nights a week and I think that helps me just as much as it does her!
If these issues continue to get worse or persist, I WILL call my PCP and get in. My new rhuemy put an order for a comprehensive metabolic panel on my lab slip, so that will let me know how much (if any) of a part my liver has to do with this all.
I hope you all are feeling good!