I just want to remind folks here (and myself, on certain days) that it is not all in your head.
Case in point: One of my worst set of symptoms has been cognitive problems. I used to have a job where I helped run the web site for a really well known company. It was a big company that you would all recognize, and probably have used. The job required me to keep a lot of details and facts in my head, and make quick decisions all the time (as in many times a day), and work with literally hundreds of different people.
Enter Sjogrens and brain fog (and a few other icky symptoms), and a medical leave that turned into leaving the company. Fast forward a year and a half, when I did neuropsychological testing, in part because my rheumy didn't believe that the symptoms that I reported could be true. My symptoms include inability to focus, problems dealing with numbers (for example, I can't copy my credit card number accurately), and word problems where I substitute close, but wrong, words for one another.
On one hand, I know that this is real. My boyfriend knows that they are real. But there were times that I doubted myself, or heard the voices of folks from my childhood who said things like "are you just being lazy?"
So I just got the test results back from the neuro psych testing at Stanford. It was a whole day of tests on all kinds of different topics, from verbal skills to manual skills to problem solving of a bunch of different kinds of problems.
And the answer is: yup! I've got cognitive problems. Specifically, short term memory problems and I'm much slower than average at solving certain types of problems. (Things that I used to be really, really good at.) And there's no "plan of action", because there is no particular way to bring these things back.
So, let's turn this thought into a positive - what autoimmune problems have you had that seemed "all in your head", but you later got evidence to prove that they were real?
We need to remind ourselves that we're not just "making it up". Just because it's subtle and and funky doesn't mean it isn't true.
Warmwaters: thank you so much for writing this as it resembles my story, except I'm still working (or pretending to be).
My rheumy has recently tapered my Plaquenil from 600 mg daily to 400 mg and added Imuran 100 mg daily in an effort to address my cognitive issues.
I have worked as a paralegal for 23 years and am a licensed PI. Attention to detail is a must and I can't remember how to construct a sentence, my home address or my telephone number without looking them up. Quite frankly, my biggest fear is that autoimmune disease will rob me of my memory.
I can accept losing my teeth, dry skin, joint pain, cold hands/feet, but to not be able to find my way home or remember my kids' birthdays or to have to surrender the license that I wanted since I was a a kid.....absolutely devastates me.
I haven't have a neuropsych exam, but my crystal ball sees one in my future, especially if I apply for disability retirement.
I have people look at me suspiciously because sometimes I appear to walk as well as anyone and sometimes I can barely go a few feet with a cane. It's not in my head. When the inflammation is up, I can't move. When it's down, I can fake for a few yards.
Oh and bumping into things isn't me just not looking where I'm going. Sometimes the small nerves pass the message wrong.
warmwaters,
I'm sure in a way you must feel some validation now in having proof of your cognitive problems, although sorry to hear that you do. But as you say, we KNOW when we are different, and know when something is just not right. It is not just in our heads.
Sorry I don't have an experience yet proving something was real except for my Fibro. dx. On the other hand, I was just trying to explain again to my PCP about my cognitive/memory issues and he just "didn't get it". He actually told me it wasn't a problem that I couldn't, for example, go into the grocery and not remember what I went for or where I parked, but a problem only if I got to the parking lot and couldn't remember what my keys were for. What??!
I just went for a "mental exam" for my SS disability case. I'll be interested in seeing the results of that...then I'll take them to Dr. Clueless. :)
Have a good weekend,
Melinda
I want to know why the heck these arrogant doctors never believe the patients. UGH!! >:(
"Patients always lie"...House
Also remember: The Cat Didn't Do It!!!! ::) ;D
I actually had a specialist tell me it was probably something I got from my cat and I didn't even have a cat when the "mess" started.
Thanks, guys~
Joe S.- gotta love House; I think my doc thinks I'm lying, or exaggerating. He's almost exactly my age and actually said "you know these things start happening when we get to a certain age". (clueles..., yeah, I know that but this is a marked change)
And yes, Pisces24, I just LOVE that the cat did it! Especially since you didn't have one. Unbelievable...
Well, think I found a new PCP this week so Dr. Clueless may soon be in the past, and I am not one to doctor-hop but it's gotten so that I need to do what's best for ME. :)
Take care,
Melinda