I hate that it's called Lupus Fog. Like it's cute or something. And it's not. It's frightening.
I noticed the typing problem too! I also think I have developed number dyslexia! My husband said I always had a problem speaking, but it is much worse now! Thanks for bringing that up Dkel.
I tried talking to my husband about it, but it’s hard…I think he thinks I make too much of it. He’s so not the worry type…the guy burst his appendix because he refused to see the doctor. So I’m hesitant to ask him.
I'm so glad this was brought up. I thought it was just me. I also thought it was my meds for bi-polar. It is definitely worse when I am tired or stressed. The last few days I have just felt weird. I agree it is embarrassing. I was thinking about mentioning it to my psychiatrist. I get disoriented. I even got lost going to my rheumy.
I've had this same problem for a lot of years now, the doctors thought it could be mini strokes, I had a massive stroke in 1995, but a about 5 years ago the neuro thought it might be early alzhiemers, because my Dad had it. We tried aricept, it didn't help, it seems its just another symptom of having lupus for so long. I guess as I get older it will get harder to know whats just aging process and whats lupus.
How did you recovery from your stoke?
I will mention it to my dr; I'm waiting for them to call me back about getting a copy of my lab results anyway. I don't have a lupus diagnosis ... just started the testing process. It's a very frustrating waiting game.
Then I went on google and started looking around...all this stuff about MS popped up, which freaked me out so bad I just turned the computer off.
Nicole, what a helpful post, both informative and encouraging! Your writing is SO clear and to the point that obviously your condition has improved. But then, writing is a lot easier for me too, since it doesn't have to happen real-time, and avoids the speech delivery aspect. My nickname, Faladora, actually means "talks a lot", because that is totally characteristic of me. But sometimes I have a rough time spitting out my ideas, even though I've in the past been a very comfortable small to mid-size group public speaker (in class, but also a more formal research presentation.) My main problem with giving presentations is talking too much! Or too fast! But other times I'm slow or less cohesive. Certainly not to the degree some of you have described, but enough that I really notice it, and one rheumatologist pointed out my speech improving as an indicator to him that my disease status was improving after Rituxan (I'm a neuropsych lupie, and Rituxan is great for that.) I consider myself very lucky to be diagnosed and treated young and early-ish in the disease course, with most problems pretty reversible so long as treatment is working alright.
Anyway, I'm rambling on, it's pretty late and when I'm tired is the hardest time to stay focused. What I actually wanted to say in my post is that I'm now working on a master's in Speech-Language Pathology... to be the type of therapist who addresses these very speech issues! One of our roles is to find out when it's a "specific language impairment" (in kids growing up) or secondary to some other medical condition that needs to be evaluated. Boy, don't we all know about mysterious "primary" causes... In any case, I wish I had an answer for your cases at the moment, but I'll have to get further into my program before I learn about these types of issues. So far it's just the developmental stuff and just getting into actual pathologies. Yes, the mini-strokes, which have a name I can't quite remember now, because I'm having one of those weeks when I can't remember names of things, are definitely one plausible explanation. Oh wait, TIAs they're called! Transient Ischemic Attack. I hate it when I can't remember that stuff off-hand, because I know it well and certainly can come off as less-knowledgeable just from not being able to rattle it off sometimes. Actually, terminology is often better for me than regular vocab, probably because of how it's memorized instead of spontaneously acquired vocab... but here I go off topic again.
One final thing I wanted to ask in my post (and I'm glad I didn't forget before concluding it ;) ) Would you two (Nicoleinwisconsin here and yabby02, original post author) be interested in letting me share your "case history" in a class sometime when it's relevant? Within our classes everything is always kept confidential, and never used with real names. It certainly wouldn't be a way to get free answers, so to speak, since it wouldn't be appropriate as actual medical advice (just like everything on here), but it could make for an interesting discussion raising awareness in the class and to bring their thoughts to you. Just an idea that is of course totally up to you.
I'm not currently in any classes about aphasia (the language use/meaning aspect) and unfortunately won't be for another year, but I am in a class about physical causes of speech disorders (speech is the part of actually executing it to deliver the message into the airwaves, and relates to Nicole's stroke-like issues.) My professor for this course is a voice disorder expert, anything having to do with vocal cords (he's really one of those semi-retired dinosaurs who authored the foundational papers in the field, like the stereotypical profs in movies...) I also have had voice trouble (hoarseness, including a previous vocal polyp, an inflamed lump on one vocal cord) that I always wondered about being possibly lupus-related.
Well, thanks for getting my mind going about this, and sorry it's flying in all directions. TJ is absolutely right we would be hilarious all in a room together! I guess it's a good thing we're all behind screens, taking our time writing it out ;)
nicoleinwisconsin said:
This is not uncommon in Lupus. Difficulty finding words, recalling words, short term memory, focusing etc. are all symptomatic of Lupus. It has to do with the electrical signals in the brain not being sent properly. I too was evaluated by a Neuropsychologist. I did so poorly on the tests, it's what ultimately sent me to a rheumatologist at UW-Madison. To resolve this issue, I take Strattera, which is an ADD medication, and it is helping. Strattera works really well to treat this, because it is a non-stimulant medication. Because I don't have traditional ADD, if I take Adderall or Ritalin (stimulant based medications) etc. I will feel anxious and hyper. It is important that those symptoms are monitored, though. In most cases although cumbersome, these symptoms are not a result of permanent damage or inflammation. However, I've read where this can be the case, and there have been instances where doctors have had success treating patients with medications that are typically prescribed to Alzheimer patients. Have you had any difficulty speaking? That was something else I experienced. A few years ago, I had issues with Aphasia. I sounded as if I had had a stroke when I tried to speak. I had muscle weakness, coordination difficulties, and my gait was awkward. I spent a week at Mayo in intensive PT/OT, and found out that this can happen with Lupus also due to electrical issues. Most of it has been resolved, but I still have some trouble. If I'm speaking for a long time or singing; it will fatigue my mouth and vocal chords. I still have weakness in my legs and arms, but it's nothing like it was. Previously I was completely reliant upon a walker. It is frightening to think all of this can happen with this disease. The only thing that gives me any peace is knowing that it could be so much worse.
I have been told that I do have this issue some times. Most often I am un aware until someone points it out and it is only with speech not the written word. I also have large chunks of time that will go missing. I will be aware that I have done or seen something but can’t tell you what. Even after being told what happens I will not remember. I can be shown pictures or video with me in an activity so I know things happens still no connection is made in my brain. Luckily I have not done anything embracing. I would still like to be able to make the connections between sight and memory. Words can be tricky just go slow and most people will be patient.
This happens two me too, sometimes I stop in mid-sentence because I can't remember how to pronounce a word. my daughter tells me calm down because I am in constant flight mode. It nice to know you're not alone.
I am a speech pathologist who works in skilled nursing rehab with people who have had stokes, dementia, etc. it’s beyond frustrating when I’m asking them to “name as many words you can think of that start with the letter F” and I can come up with fewer than them! I know my issues are not stroke/TIA related, and I have just chalked it up to “lupus fog” myself, for as angry as it makes me too. But some of this discussion has been very enlightening; I’m going to have to do some research some things. But thanks for bringing this up and all the responses! I know it helped me feel better knowing I’m not alone.