tag:blogger.com,1999:blog-690850457652849477.post4033925978326182034..comments2024-03-19T09:10:47.280-07:00Comments on Reasonably Well: THIS is My Sjogren's BrainJulia Oleinikhttp://www.blogger.com/profile/04857783768340014545noreply@blogger.comBlogger13125tag:blogger.com,1999:blog-690850457652849477.post-83969761325000979572021-05-19T09:20:16.552-07:002021-05-19T09:20:16.552-07:00I enjoy singing, and I do it quite often. So, las...I enjoy singing, and I do it quite often. So, last night, I was in the kitchen making my son a bedtime snack, and I was singing. As I was picking everything up and turning the light out to go back into the other room, I was thinking "I have really got to work on the transition between these two notes." And was planning to work on just that after dropping my kid's snack off to him. By the time I walked through the dining room and living room, though (which takes, at most, about five seconds), I had completely and entirely forgotten what song I had just been singing. And this is while I was actually making a conscious effort to hold the information in my head! I got distracted for, like, less than one second, making sure I didn't stub my toe on the table in the dark or something like that, and the information was completely and totally lost. I spent about a half hour going through my mental library of songs I like to sing, but I never remembered what it was. I gave up after I got so frustrated that I started to cry a little. <br /><br />My husband likes to kinda poke fun at me for my ability to completely forget what I'm thinking about right in the middle of the thought, and for the most part, I laugh along with him and try to stay lighthearted about it. But people don't realize how much havoc this can wreak on the inside, how horrible and helpless it feels to have parts of your own conscious mind you can't access or hold in control. It's beyond frustrating, it's absolutely maddening. It's scary sometimes, just so frightening to just have your mind go blank and reset like that. I mean, you can see it in my eyes when it happens, I get this sort of vague, unfocused, spacey look for a second, and then my mind is suddenly a clean slate. Like the brain janitor just came in and cleaned the chalkboard. And it is such a desperate feeling, trying not to let it happen. It feels like trying to grasp at water to keep it from going down the drain. You know it's happening, and you want to stop it, but it's just such a futile effort. It's those few second where you can feel the thought dissipating, and you feel like you can still catch it before it's gone completely, but it's too late. You know when it's happening, the feeling becomes so familiar, and it feels like you should be able to take back the controls, but you just can't.<br /><br />Gahhhh, Sjogren's! You've taken my teeth, you control my mind...are so some kind of alien technology trying to make me more helpless and compliant so that you can use me as a vessel? IS THAT YOUR GAME??????Opulent Resplendencehttps://www.blogger.com/profile/10602367495160298928noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-58106946097370355732018-06-16T09:33:32.878-07:002018-06-16T09:33:32.878-07:00Does anyone know of any support groups and or doct...Does anyone know of any support groups and or doctors in the Tacoma, WA area? My Dr. looked at me like I was nuts when I told her I thought my brain fog was due to my Sjorgrens. She said it was lack of sleep.JAMnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-14765833088659704322017-02-25T13:33:47.566-08:002017-02-25T13:33:47.566-08:00Very good to finally hear some info from other Sjo...Very good to finally hear some info from other Sjoggies as you call us..I was diagnosed just a few years ago and have not spoken to a single sjogrens patient until now. Still looking for a support group in Pickering area.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-52612661030069507992015-11-08T15:13:28.616-08:002015-11-08T15:13:28.616-08:00I got the cure to Alzheimer from a US doctor who h...I got the cure to Alzheimer from a US doctor who helped me out,now i am living a normal life, and am going to school and learning happily i give all thanks to my parent for helping get a good medication. you can get the medication which is a cure from Dr Phillip here is his mail address on phillips1211@yahoo.comAnonymoushttps://www.blogger.com/profile/05468226157393100664noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-40943009006170989912015-08-19T17:39:16.499-07:002015-08-19T17:39:16.499-07:00LF from México
Brain Fog is horrible……My grandmoth...LF from México<br />Brain Fog is horrible……My grandmother has Alzheimer's , and makes me nervous……it feels like I am going to have it…..Sometimes I simply forget that Sjogren's comes with brain fog, attention deficit, and other gifts…..<br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-19002159406142895482015-06-06T09:57:37.442-07:002015-06-06T09:57:37.442-07:00I was diagnosed with Sjogren's a year ago in M...I was diagnosed with Sjogren's a year ago in May. This month was the first time that I notice (really noticed!) the brain fog. The past two days I felt off balance like my head was full of cotton, could not focus, had to write even the simplest thing down or I would forget it. My boyfriend would ask me a simple question and I could not process the information. To be honest? It scared me. I will be calling my rheumatologist Monday to give her an update. How does anyone else deal with these episodes and how long to they typically last? Thanks for the input in advance! Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-44943791239442446482015-04-16T11:42:42.926-07:002015-04-16T11:42:42.926-07:00I am having memory issues worse then normal ageing...I am having memory issues worse then normal ageing. My Dr is having me have a brain MRI and doing memory testing. It may be connected to Sjogrens but don't just assume it is. Some of the memory problems you all list sound to severe to just be Sjogrens so always talk to your Dr. don't just assume its something that it may not be.. So thats why I am having it checked. It is scary,but we will see what they tell me.JuJuhttps://www.blogger.com/profile/02078423252314134807noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-41191716833666373692012-08-25T20:29:02.758-07:002012-08-25T20:29:02.758-07:00I wish I had found your blog sooner. I was looking...I wish I had found your blog sooner. I was looking for information on Sjogren’s and Anosmia and came across your blog and I’ve been reading for hours. I was diagnosed with Lupus and secondary Sjogren’s 2 years ago. Of course I had symptoms for 7 years and family history but the doctors would not listen as usual. I’m on Plaquenil, DHEA and intermittent Prednisone, and I was doing much better until I started with knees and hand pain with swelling. Blood test and x-rays are positive for RA. Six weeks ago I started on Methotrexate. This is helping the pain and knees motion but it giving me a lot of side effects. I had Anosmia now for 3 years, and it was better but now it back since I started the MTX. As you mention I can smell some odors and not others, the ones I smell are confusing, at times, I smell rotten odors that are not there, MRI was negative for anything 3 years ago. I mostly smell this awful odor that I can’t even describe. I also nearly blew up my house by the inability to smell a gas leak in the stove; thank God my husband came home in time. I hope to keep finding more answers and support in your blog. Thanks so much I feel so alone because not even the doctors know anything about what we are going through.Carynoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-77112074327013017772012-04-30T14:23:44.650-07:002012-04-30T14:23:44.650-07:00Thanks for all the bogs. I have yet to be diagnos...Thanks for all the bogs. I have yet to be diagnosed but all the systems discussed i am currently experiencing...it's quite scary the not knowing. Your blogs really help me not feel so alone.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-3025932363264027412012-02-22T10:08:46.877-08:002012-02-22T10:08:46.877-08:00OK, so I'm not alone in my forgetfullness. Thi...OK, so I'm not alone in my forgetfullness. This explains a lot as I'm learning to live with Sjogren's. I really need to take time for brain games or something. Thanks for the info!Laurahttps://www.blogger.com/profile/17258357859941835448noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-17986031784858657572011-11-23T04:39:43.861-08:002011-11-23T04:39:43.861-08:00Hi, im new to this blog. Im 33 and have primary sj...Hi, im new to this blog. Im 33 and have primary sjogrens syndrome diagnosed 3 years ago only when it became severely debilitating after years of doctors ignoring me. It began to attack my CNS and i began having seizures. Soon after my cognition was affected and I was unable to work as an RN or drive legally. It was a fog at its worst. I have been diagnosed with Encephalopathic Sjogrens. Very high dose steroids did not seem to do much except send me manic and neither did methotrexate/plaquinel/immuran I have been on them all. But the good news is I was placed on IVIG (IV Intragram or human antibodies) monthly about a year ago and have seen an enormous recovery. I am driving and within limits able to return to work. Im not in perfect health as i still get tired/ dry mouth/bad reflux etc but I am no longer crippled in migraine or cognitively 'challenged' as a kind way to put it. My immunologist says my form of Sjogrens is extremely rare and they arent quite sure how it effects the CNS/brain. Thanks for your blog. Love it!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-65902528868321145042011-10-17T17:18:48.282-07:002011-10-17T17:18:48.282-07:00Yes, it is a bit unnerving. Not only did I forget ...Yes, it is a bit unnerving. Not only did I forget my husband's name the other day, but meanwhile I could only retrieve one word from my brain, "chapter".Everything else was just random mixed up letters. It's bad when you have to tap on your husband's shoulder & say "chapter", because that's the only word your mind can formulate. Having conversations only to find myself staring at them in the middle of my own sentence....actually had someone 'give up' and leave once, because they got tired of me not finishing my sentence. I've heard that those incidents may be seizure related. This has been an interesting journey so far.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-7694517758253480672010-07-29T06:58:50.145-07:002010-07-29T06:58:50.145-07:00I'm going to have to re read this interesting ...I'm going to have to re read this interesting and informative post a few times, as my brain is not functioning today....<br /><br />This is a scary subject as I have had episodes of traveling by public transport and not remembering what stop to get off for my hospital appointment. I've been going to this hospital for 20+ years, so I knew where to go, but when that happened, I just froze and panicked, and the more I panicked, the worse my memory got. I have had a few such episodes and they are scary indeed because you just blank out and don't even remember where you're going. As my neurologist confirmed, it is brain fog and not alzheimer's. Thank God.annienoreply@blogger.com