I was reading a post from Ann S. asking about mental blurps. I have been telling my husband for the last month that I swear I have a brain tumor (bad joke-but seriously think something is WRONG!!) I will be driving somewhere and completely forget where I am going. I forget what I just passed I do everything I can to try to reorient myself. I have normal ditzy moments but this is out of control lately. There are many other examples but you get the idea. My husband says its just that I am busy and have a lot on my mind-which is a good point but this just doesn't feel like the normal ditzy me. Is this common with lupus?

Jeannie M

Hi Jeannie,
Whew! you have a LOT on your plate right now, and that's without anything going goofy with your health.
Some of the test your doc is running may be the anti-nuclear antibody or anti-nuclear AB(that would be a specific description of how the nucleus of the cell looks and the description points to certain autoimmune disorders- Lupus ususally is smooth/speckled); or anti-dna (sle) thats a good test for systemic lupus erythematous as a predictor of kidney involvement; there are a lot of others but there is no one test for lupus or many other autoimmune disorders. You are probably being told by your doc that you already have an autoimmune disorder: irritable bowel syndrome. That's one of them. Diabetes is another. What was the ratio of yur ANA titer? usuallly anything above 1:180 is strongly suggestive of lupus.
DO NOT FREAK OUT!!! over your symptoms. about 95% of all people with lupus live out their lives WITHOUT major comlications. The odds with other AI diseases is even better. Most of us have a mixed bag of things and keep finding out new ones each time we go to the doctor. Fibromyalgia and chronis fatigue syndrome have no teests developed to diagnose them- the diagnosis is made based upon symptoms only.
Most of us felt we were just "getting old" (actually, I was, cause I'm 54 haha) but you were very wise to seek out your doctor.
Mental changes can come from 4 areas:
husbands
kids
age
illness/shock/stress/lupus/diabetes/alzheimeretc(spelling?)

I think I am most distressed over the effect on my memory and cognitive ability. The lapses come and go without a pattern being evident. My job involves my memory of criminal and case law- so far that doesn't elude me, but I find myself forgetting the name of people who come into my office frequently. I can ususally dredge it up from somewhere, but it's very stressful while I am racing my mind through mental hoops trying to recall the person's name. Do not doubt your own "take" on your body- you know Jeannie best. All of us have forgotten to tell the doctor about something were were experiencing because it seemed insignificant. Then when you start reading the literature or sharing with others you find that you ahve that too. You are not imagining things- you just didn't know what all the symptoms were.
You have a bunch of symptoms similar to mine and others- those symptoms drove us eventually to seek care. Most of us have good rhematologists (they specialize in this stuff) and get by very well. Most of us are on pretty potent drugs and juggle the side effects versus the conditions getting out of hand.
While you are waiting for diagnosis and results from the labs- go to the Lupus Foundation website and study all you can.
Read all the posts on this healthboard- you'll be well armed and educated and won't feel so alone.
One last word about husbands. I was just kidding when I said they caused our brain problems. We need our husband's loving support through this. These diseases are very difficult for them to comprehend for several reasons.
1. you probably look okay and (being a Mom) are coping pretty well
2. the doctors may not make the right diagnosis- so it'll appear that you are being hysterical to-say-the-least (for some patients it takes years for a diagnosis)
3. our husbands desperately want us to be well- for our sake, the kids sake and their sake. they panic when Mom is sick or out-of-control
Be patient with him. Share with him all he'll let you and get him to do some searching for you. It'll scare him silly a few times- but it's vital that he knows what you and your family will be dealing with. Information is power!!! :-)
And remember, Jeannie, whatever you have, it won't be new when you get a diagnosis- you already have whatever you have. You'll just be getting a "name" for it and THATS's a good thing! :-)
Sending gentle hugs your way
Jeri

Thanks so much! You seem to have a lot of knowledge in that failing memory of yours-LOL!! I have to laugh at myself so I won't cry. Actually what you said about husbands is very true. I know he just wants me to be ok. At first when the doctor told me I needed more tests he freaked out. He came and read about lupus with me and thought about it for the night, by morning he had decided that I didn't have it. Anyway after reading some of these posts it just hit me so strong that I am at least on the right track. The thing that I could really relate to was the memory lapse stuff. As I said before I had been telling him that I was scared about it and why...long before I was ever told anything about the lupus screen. After reading these posts I went down and talked to him about this and told him that I really thought something was wrong with me. I explained what I had read and pointed out that it was troubling me long before I read about it. Anyway I think he finally believed it and he was really sweet to me. He basically told me what you said, he'd much rather I was just ditzy than that I have a disease.

You are right though, I honestly think I will be relieved to have some sort of diagnosis so that I can have an explanation for the things that are going on with me!

THANKS AGAIN and I will keep you updated!

Jeannie M

I'm back......just caught up on some of the posts. Try going from ditzy to blathering idiot! We were down to visit my daughter and she had us meet her new boyfriend. A couple of times, I not only forgot the words, I couldn't remember how to put them together to make a sentence. (I was extra tired by the way, so that might have contributed.) That's when the dilemma comes in as to how many people to share this with. Do you want them to think that you're a ditz or an idiot, or do you want to share that you're sick? By the way, it was a good time otherwise.

That heavy feeling in the knees and legs, to me, it's like you have weights on and all you want to do is collapse into a puddle.

Jeri, did you say the IBS is classified as auto-immune. I've never heard of that. One of the things that's really helped me with the day to day IBS is taking psyllium husk fiber supplements. It's the same main ingredient that's in Metamucil & Citricel. I take it in capsule form and it's less of a hassle. You still have to drink plenty of water and start out slow with it to give your system a chance to get used to it (avoids the gassiness). It sounds contradictory, but it's excellent for the "D" type IBS too. IBS is another thing that's really affected by hormones too. I found that my IBS and my tiredness improved after the dx sunk in & I learned more about things. Fear of the unknown creates a very high stress level.

One more opinion....isn't the time a mother decides to quit nursing traumatic under any circumstances? Giving up that special bond and moving to a different level in the relationship? That's not to say I'm discounting the very real feelings you're experiencing.

I' really jumping around from subject to subject so I hope you can follow this.

Jeannie, I hope you'll stay with us as this board and people like Jeri have helped me a lot......I'm new to this too. Take care, Ann

Ann, I am so glad you're back with us! You are right, fatigue is your # barrier to a lot. It's created by the diseases, by stress and by simply "doing" some days, on other days, it's the over-doing that'll getcha. I am more prone to talk and think goofy when I am stressed. That's why I always take my daughter to the doctor with me. She hears better that I do, anyway. Haha (Sometimes I only want to "hear" the good stuff)
My daughter-in-law, Emily, (and by the way- they are newly pregnant- yeaaaaaaa!! another UT fan) suffered with IBS for the last 10 yrs, but says it's really eased up the last few months before she got pregnant. The methotrexate seems to have put me over the edge into something that seems like IBS, but I think I'll try what you use. Can't really hurt- or can it??
The info about IBS is from a pamphlet that's put out by the Autoimmune Association and it lists all the AI diseases:
cardiomyopathy, diabetes, IBS, Systemic Lupus Erythemtous, Discoid Lupus, Rheumatoid Arthritis, Sjogren's Syndrome, Reynaud's, Asthma, Chronic Fatigue Syndrome, Fibromyalgia...
I just went and looked for the pamphlet, but, of course, I can't remember where I put it. :-}
There is a VERY good reason my husband keeps reminding me: "Special places for special things". haha I'm hopeless! :-)
To answer you question about telling family: I don't ahve an answer, but an opinion.mI have told my close family and they have told whomever they wanted to. it's very inportant that I be up=front on a need-to-know basis because the disease does complicate things. Like- I must avoid people with infectious/communicable diseases. So, I had to resign from directing Toddlers Worship at my church. I didn't tell them exactly what I had, just explained that I was dealing with some serious health issues and had to withdraw from thatnsort of service. However, my Sunday School class knows all about it as they are my prayer-support. I am serious with co-workers if they get careless about their coughing habits, or come in deathly ill. We have 3 on staff of 6 who are at-risk from catching stuff. We try to stay light about it, but must be careful for each other. My boys don't understand as much about this disease as they will be in-time, but myb daughters and daughters in law are hungry for any and everything about the disease. They also monitor the whole family's health, anyway. They come in very handy as accountability monitors if I am trying to overdo. My husband is wonderful. he says that God gave me to him to protect and thata he's going to do whether I am sick or well, grouchy or happy, worn-out or frisky.
The rest of the people- and that goes for a buch at church to, hear about the disease(s) you have and come running to see how sick you really are- I call them crisis seekers. They find it exciting to hear of a new ailment. However, we disappoint them most of the time and look well. So we get the "well, you dont LOOK sick..." I try to avoid those kind of people unless I feel really strong. I don't have the time nor energy to convince them how sick I have been and may be off-and-on the rest of my life. For all who ask I am honest with one unwavering truth: I give God the glory for His comforting and for getting me through each day surrounded by His love.

It sure is good to share with y'all. have a great week learning, growing, surviving and overcoming.
Rest in Him
jeri

Hi Jeri,



I think we have 2 posts going again! My fault, sorry.

Congratulations on the upcoming new grandchild. Wow!!

[QUOTE]

My daughter-in-law, Emily, (and by the way- they are newly pregnant- yeaaaaaaa!! another UT fan) suffered with IBS for the last 10 yrs, but says it's really eased up the last few months before she got pregnant. The methotrexate seems to have put me over the edge into something that seems like IBS, but I think I'll try what you use. Can't really hurt- or can it??



The info about IBS is from a pamphlet that's put out by the Autoimmune Association and it lists all the AI diseases: cardiomyopathy, diabetes, IBS, Systemic Lupus Erythemtous, Discoid Lupus, Rheumatoid Arthritis, Sjogren's Syndrome, Reynaud's, Asthma, Chronic Fatigue Syndrome, Fibromyalgia...



I printed a list off of one of the good health sites and it has over 70 disorders & IBS is not listed. I've had IBS since college and have never heard it referred to as autoimmune, nor read that it was in my research. Now, after all the stuff I've learned about Lupus, I've found that it must be related or can be a side effect of the autoimmune stuff. I don't think it's a 2 way street tho.....i.e. people with autoimmune stuff tend to get IBS, but not all people with IBS have a tendency to get autoimmune disorders. Tell Emily that hormones usually effect IBS. It's usually worse around the time of your periods, menopause, etc....I can't remember how mine was with pregnancies. When mine got worse with meno was when I went to Rochester Mayo for help. Because of research done by Dr. Schuster (Johns Hopkins) who proved a connection between the brain & stomach in IBS patients, they prescribed a low dose anti-depressant which also did wonders for me. It's purpose is to calm the muscles and spasms in the stomach which cause either the D or the C of IBS (it's not to relieve anxiety, etc). I wouldn't have went on it except that my problems had gotten so severe. The rheumy wasn't worried about the med mix with it, nor the psyllium husk. You can get the psyllium husk caps at a health food store. I started out by only taking 1 (500mg)/day for about 5 days, then increased to 2 for a while, till fnally I take 2 after breakfast and 2 after supper. It can be somewhat of an individual thing....you may need less or more than me. Just see how your body reacts, but be sure you're drinking a lot of water during the day. Another thing a lot of the IBS's on the other health board seem to agree works are digestive enzyme supplements. I haven't tried those yet. It's on my list tho. It sounds like it would be good to use when you just can't resist the urge to eat those trigger foods. I wish they would do some research on food allergies and IBS too. A person on the IBS board who just found out she has Celiacs (the only person on the board that's ever mentioned having an AI disorder) said that when she went on the special diet for that, her IBS improved sooo much.



I have told my all my family, it's just those periphery people etc. Sometimes, it feels like if you tell too many people, you're waving the flag to get attention or sympathy. I just really hate looking like an idiot or a 'dumb broad', or with my age creeping up there maybe it would change to a 'senile senior'. I've already run into the crisis seekers you referred to.



- I must avoid people with infectious/communicable diseases.



WHAT'S THIS???? I work in a public school (K-12). The Dr. has never mentioned this nor did I hear any mention or warnings in my research. But, DAH!!!!......It would make sense that if your immune system is too busy attacking you that it does not have the ability to protect you anymore. The last few yrs. though, I've been more lucky than usual about not catching much. I've been getting the flu shot and using cold eez??!?



You'all have a good week too, Ann





[This message has been edited by Ann S (edited 03-04-2001).]