Question:
Please be patient with me as I am having trouble concentrating~~~do remember that the white fibrous tissue will not always show on an MRI, and that is why there are really no conclusive tests for CNS lupus. They base many diagnoses on the symptons which are being exhibited. The same goes for cerebritis. I will try to be more factual at another time, the "fog" is just too great right now. As one who has been dealing with these diagnosis, I hope I can be of help. Keep a daily diary of the times when things are just out of kilter, actually, I have just been told by my PCP to do that daily, and am having a hard time dealing with that~~~~while I did so for family reasons, you know, personal happenings, I tended not to dwell on the downers of having SLE. But now for disability, they say it could be helpful. I intend to discuss this with my rheumy in May. A spinal tap could rule out MS. Being an OB/Gyn nurse, I refused this, even when I was at my worst. Sorry for the rambling, will be back when I’m more refreshed. (((Kimw777)))
Response:
On Wed, 2 May 2001 12:15:51 -0400, "Melanie Kopfinger" <kfin…@mindspring.com> wrote: >Where can you get on of these? >Mel
It’s called the Memory Minder: Personal Health Journal. My chapter sells it for $13. I would imagine the cost is similar in other chapters (but have been surprised before so don’t quote me.) There’s something else called a Wellness Journal – it’s about $9 and I never looked at it so can’t tell you what it’s like. But definitely the Mem. Minder is excellent. Several members of my local group have one and use it regularly. *********************************** KCat – I am not a medical professional. The contents of this post are based soley on my experiences and opinions http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq20.htm ("`-”-/").___..–”"`-._ (`6_ 6 ) `-. ( ).`-.__.’`) (_Y_.)’ ._ ) `._ `. “-..-” _..`–’_..-_/ /–’_.’ ,’ (()),-” (()),’ (((.-’
Response:
If you don’t have a chapter of the Lupus Foundation near you, you can get it from the national foundation. Lupus Foundation of America (Lots of current information and support groups.) http://internet-plaza.net/lupus/ Sandra
Response:
Where can you get on of these? Mel "SCroyle909" <scroyle…@aol.com> wrote in message
news:20010501211514.06291.00000862@ng-ci1.aol.com… – Hide quoted text — Show quoted text -> The diary sold by the Lupus Foundation is great. It’s what we originally used. > It gives you places to write down your medications, lab results, symptoms and > more. The thing I like about the symptom part is that it really simplifies > things. It gives you categories of symptoms such as head and neck, > extremities, skin, and so on. There are also places to write how you felt in > general, your activity that day, your pain scale, a picture of a human body > where you can mark trouble spots, and more. In the back is a listing of > various symptoms system by system which is very helpful when you’re at a loss > for words, or just to remind you of something you might have forgotten. > I highly recommend the book. It isn’t expensive. It’s most useful for people > who are working on a diagnosis, who have just been diagnosed, or who are just > needing to document their lupus symptoms for whatever reason. > It’s useful too for documenting other chronic medical conditions. > Sandra
Response:
The diary sold by the Lupus Foundation is great. It’s what we originally used. It gives you places to write down your medications, lab results, symptoms and more. The thing I like about the symptom part is that it really simplifies things. It gives you categories of symptoms such as head and neck, extremities, skin, and so on. There are also places to write how you felt in general, your activity that day, your pain scale, a picture of a human body where you can mark trouble spots, and more. In the back is a listing of various symptoms system by system which is very helpful when you’re at a loss for words, or just to remind you of something you might have forgotten. I highly recommend the book. It isn’t expensive. It’s most useful for people who are working on a diagnosis, who have just been diagnosed, or who are just needing to document their lupus symptoms for whatever reason. It’s useful too for documenting other chronic medical conditions. Sandra
Response:
In article <00otetouqp7b6g8nu3n285ifiv65isl…@4ax.com>, KCat <kcdoc…@ghg.net> wrote >I like the tape recorder idea. >The LFA sells a diary that *might* make things easier in that for each >day it has a schematic of the human body (front and back) so you can >mark areas of pain, which blood tests were done recently, what you’ve >eaten that day, what meds you’ve taken that day, etc.
Reminds me of a place I worked, where the secretaries had a pad like that and used to relieve stress by drawing more (or if it was a bad day less) clothes on the outline 
— Andy For Austrian philately <URL: http://www.kitzbuhel.demon.co.uk/austamps/> For Lupus <URL: http://www.kitzbuhel.demon.co.uk/lupus/> For my other interests <URL: http://www.kitzbuhel.demon.co.uk/>
Response:
I like the tape recorder idea. The LFA sells a diary that *might* make things easier in that for each day it has a schematic of the human body (front and back) so you can mark areas of pain, which blood tests were done recently, what you’ve eaten that day, what meds you’ve taken that day, etc. I keep a diary in a small spiral and that’s enough for me at this point. It doesn’t have to be daily but if you can just jot (or record) notes on days that are different from most other days that can help. But I do understand. I am having a lot of short-term memory problems (probably caused by one of my meds) and I make my daugther write her schedule down for each day/week and I write mine down every day or I’ll forget things. *********************************** KCat – I am not a medical professional. The contents of this post are based soley on my experiences and opinions http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq20.htm ("`-”-/").___..–”"`-._ (`6_ 6 ) `-. ( ).`-.__.’`) (_Y_.)’ ._ ) `._ `. “-..-” _..`–’_..-_/ /–’_.’ ,’ (()),-” (()),’ (((.-’
Response:
Diaries are tough to keep. We kept one for awhile back when my daughter was first diagnosed with lupus. It was helpful in the beginning when we were working on a diagnosis and while we were trying to determine the severity of her lupus and what the appropriate treatment would be. Since then, we haven’t continued to keep one. It hasn’t seemed necessary anymore, and my daughter says she doesn’t like to dwell on her symptoms that much. Sandra
Response:
Hi I too have CNS and have a hard time with the whole diary thing… But as I was reading your post just now I remebered ( yea!!!!) a long while back (like 2 years ago) someone on the news group suggested a mini tape recorder to remember things. Her mom had given it to her I believe and she kept it in her purse to remember dates and things. I have a really hard time writing anymore so I just avoid it. Maybe a tape player would be good I know my daughter would love it as it is her I am always trying to keep up with. Hugs Cindy
Response:
<<…do remember that the white fibrous tissue will not always show on an MRI, and that is why there are really no conclusive tests for CNS lupus. They base many diagnoses on the symptons which are being exhibited. The same goes for cerebritis. >> True. This is also why vasculitis and some other CNS manifestations of lupus are often diagnoses of exclusion. They exclude other possibilities. Then, even if there are no overt physical findings proving CNS lupus, they make the diagnosis based on symptoms. Sandra
Response:
Dear Kim, Many doctors over the years have asked me to keep diary. I was able to do it years ago before it got really serious, and I was able to start a few. I think that the inability to keep a diary is an indication of a certain serious level, or kind of, brain fog. Now I just chuckle inside when asked to keep a diary, unless it is my neuro or rheumy, then I try to tell them why I can’t do it. Never tho, have I gotten an understanding response. If you do manage to come up with a way to keep up with a diary, I’d think that this was a very very good sign for your cerebritis, as well as useful. If you find a particular kind of keeping track, I would appreciate a note to the newsgroup. In fact, if anyone has offerings about ways of keeping a diary that has worked for you, I’ll bet a number of us would be happy. Thanks Kim, and Good Luck, Warm Hugs, Barbara kimw777 <kimw777_mem…@newsguy.com> wrote in message
news:9cfsgj0ohj@drn.newsguy.com… – Hide quoted text — Show quoted text -> Please be patient with me as I am having trouble concentrating~~~do remember > that the white fibrous tissue will not always show on an MRI, and that is why > there are really no conclusive tests for CNS lupus. They base many diagnoses on > the symptons which are being exhibited. The same goes for cerebritis. I will > try to be more factual at another time, the "fog" is just too great right now. > As one who has been dealing with these diagnosis, I hope I can be of help. Keep > a daily diary of the times when things are just out of kilter, actually, I have > just been told by my PCP to do that daily, and am having a hard time dealing > with that~~~~while I did so for family reasons, you know, personal happenings, I > tended not to dwell on the downers of having SLE. But now for disability, they > say it could be helpful. I intend to discuss this with my rheumy in May. A > spinal tap could rule out MS. Being an OB/Gyn nurse, I refused this, even when > I was at my worst. Sorry for the rambling, will be back when I’m more > refreshed. (((Kimw777)))
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