Lupus FAQ

Question:

Hello Ian, No one’s replied (yet). Yes it seems that olive leaf boosts the immune system.  Were you thinking of ingesting or topical? I suppose you could try a good quality olive oil on one lesion and see what happens… Here’s (my friend) Merck ; http://www.merck.com/pubs/mmanual/section5/chapter50/50f.htm Of note, <snip>Plastic tape coated with flurandrenolide frequently helps with resistant lesions.<snip> but then I would wonder is it the flurandrenolide itself or just covering up? Maybe worth a try? I sure wish I knew how to help more. Perhaps there’s more there that will help you? Best, J – Hide quoted text — Show quoted text -Ian Liberman wrote: > Some one recommended olive leaf for my discoid lupus. My brother is a > pharmacist and said that olive leaf is an immune stimulant and probably not > good for lupus. Anyone had any experience with Olive leaf. Thanks.

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Some one recommended olive leaf for my discoid lupus. My brother is a pharmacist and said that olive leaf is an immune stimulant and probably not good for lupus. Anyone had any experience with Olive leaf. Thanks.

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Question:

Hi all. I would appreciate if one or two folks would help me out on Section 5 of the FAQ.  I’ve gone through the first 1/2 or 2/3 of this section, clicking on each URL to make sure it is still functional or determine if it could be better categorized.  But I will be on the net for another 2 hours if I keep going at this rate. I stopped at the "Discoid Lupus".   It would be very helpful to me if a couple of folks who have a little extra time could continue the process.  Start at Discoid Lupus – click on each link and check to make sure it still functions.  Also look at the content to see that it fits with the category it is in. I have so many changes I am working on for the FAQ that this process is going to make it just that much slower to get done.  It’s not really time critical – but in the same, I want newbies to have the most accurate access possible so I’d like to finish it before Feb. If anyone would like to volunteer to help, please contact me and I can split the responsibility among 2-3 folks?  if 2 or 3 folks work on it than it can be done in no time at all.   But as long as I’m working on it – all the other things in teh fAQ that I want to fix are sitting there waiting for me. Many many thanks. Love, kcat

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I’m on it. What should I do if I find a disconnect? – Hide quoted text — Show quoted text -On Mon, 07 Jan 2002 13:56:36 -0600, KCat <kcdoc…@ghg.net> wrote: >Hi all. >I would appreciate if one or two folks would help me out on Section 5 >of the FAQ.  I’ve gone through the first 1/2 or 2/3 of this section, >clicking on each URL to make sure it is still functional or determine >if it could be better categorized.  But I will be on the net for >another 2 hours if I keep going at this rate. >I stopped at the "Discoid Lupus".   >It would be very helpful to me if a couple of folks who have a little >extra time could continue the process.  Start at Discoid Lupus – click >on each link and check to make sure it still functions.  Also look at >the content to see that it fits with the category it is in. >I have so many changes I am working on for the FAQ that this process >is going to make it just that much slower to get done.  It’s not >really time critical – but in the same, I want newbies to have the >most accurate access possible so I’d like to finish it before Feb. >If anyone would like to volunteer to help, please contact me and I can >split the responsibility among 2-3 folks?  if 2 or 3 folks work on it >than it can be done in no time at all.   But as long as I’m working on >it – all the other things in teh fAQ that I want to fix are sitting >there waiting for me. >Many many thanks. >Love, kcat

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On Mon, 07 Jan 2002 16:18:51 -0500, Wes Johnston <wesle…@msn.com> wrote: >I’m on it. >What should I do if I find a disconnect?

Thanks Wes (even though I thanked you in email as well).  Your help was much appreciated. An FYI for you or anyone else – if there’s a disconnect – than just make a note of it and let me know.  Unless you are really into it and want to do a web search to see if it might have changed URLs… but that’s only if ya wanna!

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Question:

Good luck Marla, I’ll be thinking of you.  Let us know how you are doing. Be well- Tracy my homepage: http://home.talkcity.com/ParadiseDr/goodboie/index.html  : )  smile – it makes people wonder what you’re up to!

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Good luck Marla! Make Jimmy bring you a BUNCH of flowers! Rebecca

– Hide quoted text — Show quoted text – Well guys,,My test spot for my laser surgery healed well,,I’m having the full procedure Tuesday at noon. I’m a little scared,,But releived it’s almost over. I’ll keep you posted,,Love,,Mo Please visit my pain management forum at: www.delphi.com/lotsapain Here’s some pictures of friends and family: http://community.webtv.net/MARLA69/Marlaspicturepage

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Hi Marla – I just read your post, and hope all went well with your laser surgery today. Tammy

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Good luck with your srgey tomorow. My tughts and prayers are with you. Julie

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Good Luck! Staci

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Dear Bonnie:   My puter crashed, (again!!!) and I am still trying to find my old addresses. I haven’t gotten yours yet.  Would you please email it to me at Thanks.   Love,   Margie CD Class of 67 UC Class of 96

Response:

Dear Marla:   I apparently missed the original to this which explained just what type of surgery you are about to have, but, I wish you the best anyway and will keep you in my prayers.  You are another person who has been through so much.  I will never forget all the trouble and pain you went through with your eyes. You have no idea what an impact that had on me.  I feel for you.  I pray for wellness for you.  Good luck and God bless. Always,   Margie CD Class of 67 UC Class of 96

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Marla, I hope all went well.  : ) Take Care, Sherry    (CD Class of ‘91)

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Sorry so late, but good luck to you Marla. Lynn in Fl

Well guys,,My test spot for my laser surgery healed well,,I’m having the full procedure Tuesday at noon. I’m a little scared,,But releived it’s almost over. I’ll keep you posted,,Love,,Mo Please visit my pain management forum at: www.delphi.com/lotsapain Here’s some pictures of friends and family: http://community.webtv.net/MARLA69/Marlaspicturepage

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Well guys,,My test spot for my laser surgery healed well,,I’m having the full procedure Tuesday at noon. I’m a little scared,,But releived it’s almost over. I’ll keep you posted,,Love,,Mo Please visit my pain management forum at: www.delphi.com/lotsapain                               Here’s some pictures of friends and family: http://community.webtv.net/MARLA69/Marlaspicturepage  

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Bonnie, In case Marla doesn’t get back to you before tomorrow – she posted last month and said she was having resurfacing done on her face to correct scarring from discoid lupus. GOOD LUCK MARLA!! ~~~~Pat CD Class of 98 Got questions?  Get answers over the phone at Keen.com. Up to 100 minutes free! http://www.keen.com

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Hey, I never heard anything about you having surgery…what’s up? You can email me Bonnie

– Hide quoted text — Show quoted text – Well guys,,My test spot for my laser surgery healed well,,I’m having the full procedure Tuesday at noon. I’m a little scared,,But releived it’s almost over. I’ll keep you posted,,Love,,Mo Please visit my pain management forum at: www.delphi.com/lotsapain Here’s some pictures of friends and family: http://community.webtv.net/MARLA69/Marlaspicturepage

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Good Luck Marla! Andy

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Marla Best Wishes on your lazer surgery .. I shall be thinking of you !! Maryjo – who wonders if they are using the lazer she built in 1981 !!  I HOPE NOT .. Marla deserves the best !!!

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Good Luck Marla, and don’t be afraid of them lazers, they are pretty clean and accurate…better than a sharp piece of metal any day. Cliff Got questions?  Get answers over the phone at Keen.com. Up to 100 minutes free! http://www.keen.com

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Question:

Ignorance here – what are C3 and C4?

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They are complement tests which are test for inflammation in the body. They are blood tests…. — JANERS

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Thanks!  I guess they are probably what my husband had when first diagnosed with discoid lupus in order to rule out SLE. Janers <rojak…@bright.net> wrote in message

news:rIMD4.543$t_3.8550@cletus.bright.net… – Hide quoted text — Show quoted text -> They are complement tests which are test for inflammation in the body. > They are blood tests…. > — > JANERS

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The C3 is a direct inidicator of lupus activity and often signals kidney involvement. The C3 and C4 are both used to monitor flares and reations to meds. some rheumes check them monthly, others less frequently.  Daniel Wallace’s "The Lupus Book"  was the book my rheumatologist said I could not be without and I ordered it that same day.  GET IT!!!!  It is geared for family and patient understanding and leaves not one thing out.  Also "The Lupus Handbook for Women" by Robin Dibner,M.D.,and Carol Coleman is great for general understanding–for men and women..Dibner’s paperback is around 11.oo and Wallace’s is a hardback–about 20.00.  But these two books have been invaluable to my husband and myself.  Good Luck–kim * Sent from AltaVista http://www.altavista.com Where you can also find related Web Pages, Images, Audios, Videos, News, and Shopping.  Smart is Beautiful

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In article <XoMD4.1510$6j4.98…@news1.primary.net>, Karen <ka…@dialnet.net> writes >Ignorance here – what are C3 and C4?

Look at "How is Lupus Diagnosed" in the FAQ for this group. Its usually posted here – you need Part 3. Or its on my site. — 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/>

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In article <05a4d7f6.7ddbe…@usw-ex0110-075.remarq.com>, kim <kim777NOk iS…@comwares.net.invalid> writes >The C3 is a direct inidicator of lupus activity and often >signals kidney involvement. The C3 and C4 are both used to >monitor flares and reations to meds. some rheumes check >them monthly, others less frequently.  Daniel >Wallace’s "The Lupus Book"  was the book my rheumatologist >said I could not be without and I ordered it that same >day.  GET IT!!!!  

Make sure you get the second edition. — 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/>

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Question:

So glad to hear you are doing better, Marla! Hope I can get them to give me another dose… Flip

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Well,,5 days on transfer factor,,the discoid lupus on my cheek and nose is almost completely gone,,my derm dr. has had me on steroidal ointments 600 x stronger than perscription hydrocortisone ( 3 different ones) and all they did was make the lesions seep and turn red,,,they are almost gone,,i almost cried when i looked in the mirror for the first time since july and didnt see huge red bumps,,best for last,,,the  morning bathroom trips are almost  non-existant,,,istill have the cramping ,,because my scar tissue is so dense,,that’s just narrowing,,but,,i feel pretty good!!!! Strange Hugh? I’ll keep you posted,,,Love you all,,Marla PLEASE SEND ALL DAYTIME E-MAIL TO;

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That’s great to hear Marla! Mmoooo! *hugs and well wishing prayers!* Jessica – Hide quoted text — Show quoted text – Well,,5 days on transfer factor,,the discoid lupus on my cheek and nose is almost completely gone,,my derm dr. has had me on steroidal ointments 600 x stronger than perscription hydrocortisone ( 3 different ones) and all they did was make the lesions seep and turn red,,,they are almost gone,,i almost cried when i looked in the mirror for the first time since july and didnt see huge red bumps,,best for last,,,the  morning bathroom trips are almost  non-existant,,,istill have the cramping ,,because my scar tissue is so dense,,that’s just narrowing,,but,,i feel pretty good!!!! Strange Hugh? I’ll keep you posted,,,Love you all,,Marla PLEASE SEND ALL DAYTIME E-MAIL TO;

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Question:

Hi All, I’m so grateful to have found this support group!  This has been a tough couple of years for me.  I first noticed skin rashes on my arms and face shortly after I gave birth to my daughter. It wasn’t until two years later, when I went in to see a dermatologist about my acne, did he notice the lesions on my arms, and did a biopsy which came out to having Discoid Lupus.  I’ve had several other serious tragedy’s in my life. Shortly after my husband and I seperated, he decided to spite me and kidnapped my then 2 year old baby.  For the past year and a half, I’ve endured great stress in looking for her and dealing with various investigators, police, attorneys, so on and so forth.  My dermatologist told me the chances of developing internal Lupus was rare, however, sadly enough, I was just diagnosed with it a couple weeks ago.  I wanted to believe the tiredness, dizzy spells, and achy joints were just from my endless search for my little girl.  Sometimes life just doesn’t seem fair.  I feel like I’ve hit a dead end and have nowhere to go.  But I can’t and won’t give up!  Ive got a precious child out there who needs me!  I’m a fighter, but I don’t know the tools to use in which to fight. If there is anyone out there who can share anyways to cope I’d grately appreciate it! Thank you so much for letting me share. Summer

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About the only thing I can do for you at this point is pray-which I will! I have two young children too and can’t imagine what you’re going through.  God Bless. Cindy

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May I add my prayers as well.  Keep the faith and keep the fight. Bonita

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Question:

Does anyone know the average length of time it takes for plaquenil to begin showing improvement in discoid lupus? Thanks Ian

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The last time I took Plaquenil the Immunologist told me that it would take 4 months for it to start working. At 4 months they weaned me off of prednisone. Lynne – Hide quoted text — Show quoted text -Ian Liberman wrote: > Does anyone know the average length of time it takes for plaquenil to > begin showing > improvement in discoid lupus? Thanks Ian

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In article <36744808.775C…@shaw.wave.ca>,   Ian Liberman <ian…@shaw.wave.ca> wrote: > Does anyone know the average length of time it takes for plaquenil to > begin showing > improvement in discoid lupus? Thanks Ian

     I think it takes three months or more to start working, Ian. Consult your rheumatologist for more details, though. I’m just a girl with lupus who takes plaquenil herself.       Pokernose ———–== Posted via Deja News, The Discussion Network ==———- http://www.dejanews.com/       Search, Read, Discuss, or Start Your Own    

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whoops! made a mistake the other guys  are right  3mos i knew there was a three in there some where. sorry beatnik1

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Hi Group ,   Plaquenil takes at least 3 mths to build up in the blood to a therapeutic level. It can take anywhere from 3 to 6 mths to see any relief of symptoms. This really varies with length of illness and severity of symptoms. I hope he also told you about getting your eyes checked at LEAST every 6 mths . There is a serious side effect called retina pigmentation which if detected early doesnt create a problem This has no symptoms and can only be picked up by your opthamologist. The drug is then stopped with out any damage. Plaquenil is otherwise very benign. Good luck and hang in there keep a weekly journal cause the relief comes slowly. The journal helps you see the changes. Regards,             socjog@aolcom

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At least 2-3  months I was told.  I have had lupus for 2 yearsand have been on plaquenil since the beginning. Iyam…@aol.com

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Question:

Elizabeth,     I don’t have any answers to your questions.  I just wanted to welcome you to the group.  Many people have bright and flourescent lighting, including me. I wear sunglasses and a visor outside.  But, I don’t know if those automatic tinting glasses would help. I have never tried them.   Good luck! Take care, Jackie K

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- Hide quoted text — Show quoted text – Hello everyone. I’m new to the group and I’m learning a lot of great information from you all.  I have a question.  I get migraines very frequently.  The seem to happen in two different way. I get migraines that start with the aura, then an upset stomach, then pain.  Sometimes the aura leads to almost temporary loss of sight. Although sometimes I don’t get the pain of upset stomach at all and I just get the aura and sight problems.  I have found that my exposure to light (especially fluroescent seems to triger them)  I work in a very bright office and things have just been getting worse. It’s to the point now that I’m not sure where one migrain ends and another one begins except for the fact that when I’m not exposed to the bright light they are not as frequent. The problem is not just with the lights in my office but any where I’m exposed to a bright light. Even getting high-beamed on the road.  SHort of leaving my job ( which will be in the future anyway) is there anything that I can do. I had thought of getting those glasses that get darker when things get brighter.  Does anyone think that this will help. Thanks Elizabeth P.S. Could someone send me the FAQ that I heard about.

These glasses may have changed, but as of 10 or so years ago they responded to ultraviolet — which there is little of in the office. On the other hand, there is no reason you can’t use sunglasses at the office.  The problem with high beams I relate to; the temporary solution is to look away and adjust my mirrors so that the clowns in macho-mobiles with headlights 5′ off the ground (and oatmeal for brains) reflect somewhere else.  Longer term, I’ve found that various prophylactic med’s can nearly eliminate this sensitivity; YMMV. This and other FAQs can be found at http://rtfm.mit.edu. Welcome, and good luck. -Troy — . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .          filler added because Rutgers news server requires          excess added lines.  My apologies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Hello everyone. I’m new to the group and I’m learning a lot of great information from you all.  I have a question.  I get migraines very frequently.  The seem to happen in two different way. I get migraines that start with the aura, then an upset stomach, then pain.  Sometimes the aura leads to almost temporary loss of sight. Although sometimes I don’t get the pain of upset stomach at all and I just get the aura and sight problems.  I have found that my exposure to light (especially fluroescent seems to triger them)  I work in a very bright office and things have just been getting worse. It’s to the point now that I’m not sure where one migrain ends and another one begins except for the fact that when I’m not exposed to the bright light they are not as frequent. The problem is not just with the lights in my office but any where I’m exposed to a bright light. Even getting high-beamed on the road.  SHort of leaving my job ( which will be in the future anyway) is there anything that I can do. I had thought of getting those glasses that get darker when things get brighter.  Does anyone think that this will help. Thanks Elizabeth P.S. Could someone send me the FAQ that I heard about.

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Elizabeth, When they put in Florescent lights in my school, I was devastated with migraines (this is Elementary School!) My Mother brought me to the doctor, who suggested an ophthalmologist or optometrist.  The optometrist noted I had minimal corrective needs, BUT as there was a new photochromatic on the market, and he had seen research which indicated they blocked the ‘flicker’ rate of the florescent, he suggested we try these.  I HATED glasses (what 8 year old would not!) BUT when I wore them all day; no migraines.  When I took them off I was miserable.  Made me a believer.  And to continue with ‘flicker rates’ – I could never play early Video Games – I saw the ‘refresh’ lines!..Tho  several ‘electronic’ types insist that is impossible, those games made me sicker than a dog.  Wasn’t till computers got better screens that I could tolerate them either (course having ‘electronic’ types around the house meant that I learned early on how to fix flicker/refresh rates!) Some folk insist that Photochromatic glasses will not work in Office setting. They do actually block some, and do ‘darken’.  I am still  wearing PhotoGray prescription lenses, as this helps me the very most over the most situations. When I go outside, they darken to protect against sunlight (tho if you are in REALLY sunny area, like Arizona or New Mexico – shades with mirror coat are the only savior) in a car, they darken slightly, and at night are clear. There have been studies on what helps people in your situation.  Some individuals are best helped by a light grey tint, others by amber or blue. There are ‘computer non-glare’ coatings available, as well as Anti- UV and IR… Hope this helps you… You are not alone with this problem. Tek P.S. FAQ :  http://www.meldrum.demon.co.uk/migraine/ – Hide quoted text — Show quoted text -Hello everyone. I’m new to the group and I’m learning a lot of great information from you all.  I have a question.  I get migraines very frequently.  The seem to happen in two different way. I get migraines that start with the aura, then an upset stomach, then pain.  Sometimes the aura leads to almost temporary loss of sight. Although sometimes I don’t get the pain of upset stomach at all and I just get the aura and sight problems.  I have found that my exposure to light (especially fluroescent seems to triger them)  I work in a very bright office and things have just been getting worse. It’s to the point now that I’m not sure where one migrain ends and another one begins except for the fact that when I’m not exposed to the bright light they are not as frequent. The problem is not just with the lights in my office but any where I’m exposed to a bright light. Even getting high-beamed on the road.  SHort of leaving my job ( which will be in the future anyway) is there anything that I can do. I had thought of getting those glasses that get darker when things get brighter.  Does anyone think that this will help. Thanks Elizabeth P.S. Could someone send me the FAQ that I heard about.

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Welcome to ASHM.  I have emailed you Priscilla’s Welcome FAQ as requested. Suzie Melbourne, Australia There are three crowns: the crown of Torah, the crown of priesthood and the crown of royalty; but the crown of a good name exceeds them all. Pirke Avot 4:19.

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- Hide quoted text — Show quoted text – Hello everyone. I’m new to the group and I’m learning a lot of great information from you all.  I have a question.  I get migraines very frequently.  The seem to happen in two different way. I get migraines that start with the aura, then an upset stomach, then pain.  Sometimes the aura leads to almost temporary loss of sight. Although sometimes I don’t get the pain of upset stomach at all and I just get the aura and sight problems.  I have found that my exposure to light (especially fluroescent seems to triger them)  I work in a very bright office and things have just been getting worse. It’s to the point now that I’m not sure where one migrain ends and another one begins except for the fact that when I’m not exposed to the bright light they are not as frequent. The problem is not just with the lights in my office but any where I’m exposed to a bright light. Even getting high-beamed on the road.  SHort of leaving my job ( which will be in the future anyway) is there anything that I can do. I had thought of getting those glasses that get darker when things get brighter.  Does anyone think that this will help. Thanks Elizabeth P.S. Could someone send me the FAQ that I heard about.

There is a federal law, and I can’t quote it off the top of my head (the number of it), that says if you have a disability that your employer has to accomodate you.  I have Discoid lupus and vascomotor rhinitus. This requires that I don’t have florcent lights over my cube (for the lupus) and I have a ceramic heater in my office (for the vasomotor rhinitus), which they tried to take away, but when I told them I needed it for medical reasons…well the securty guards come by every night to make sure it’s turned off. I also had an operation (transposition of the ulnar nerve which required me to have a ergonomic keyboard at work).  I was just gonna buy one and take it into the office when my Sys Admin guy said, NO, they will pay for it, because you had this problem.  that’s when I learned about the law!    I had no idea prior to them telling me this, I just figured my boss bitched and thats why I got to keep my heater nope…it’s a law.  I don’t take advantage of it, some people do.  My company is very good about this (probably because we have people on Capitol Hill every day, dealing with government and the FCC, so we have to stay clean).  But my company is really wonderful about accomodating people.  And I’m far from handicapped,  I’ll just get really sick if I have cold air blowing on me (i’m getting over pneumonia now) and they have since closed off the vent that blows over my cube! . — Mary f.        <No Kitty!  it’s MY POT PIE!           _         _                (       / )      |  ) ) _,,,/ (,,_                /, . ‘`~   ~-.  ;-;;,_                 |,4)     -,_. ,  (  `’-’    ’-~~’ (_/~~’  `-’_) It’s a widdle,widdle, widdle pud (She’s not big on sharing, is she?) http://home.earthlink.net/~maryf

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Hey Kath!  It’s wonderful to see you posting again!  You have been missed. Jan ;*) "If we never experience pain, how then will we ever recognize joy?" Jan ;*) "Use no hurtful deceit; think innocently and justly; speak accordingly" Ben Franklin

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Hi, your problem is one that is frequent.  had these things thru childhd, college and i work driving (pharmaceutical sales).  Bright flickering, pulsating light may all cause problems—turn the lights down and get those darker glasses.  these changes and quality of light can preciptate the attack, and aggravate it.  you are also more sensitive to light (photophobia) during the attack. hope you feel better soon.  PS—Also watch noise levels.  Certain frequencies, high etc can worsen the condition and act like the light does. Migraine starts as some disturbance in the brain (way down in the primitive or stem) that sets off a cascade of events—aura, stomach problems, then finally pain. these aura, pain can overlap, or come in sequence.  also, the HA and related symptoms can be tied to many other factors.  it’s like if the conditions are right and you get enough of these aggravating factors—you’ll tip the scales and go into one.  take care. kath – Hide quoted text — Show quoted text – Hello everyone. I’m new to the group and I’m learning a lot of great information from you all.  I have a question.  I get migraines very frequently.  The seem to happen in two different way. I get migraines that start with the aura, then an upset stomach, then pain.  Sometimes the aura leads to almost temporary loss of sight. Although sometimes I don’t get the pain of upset stomach at all and I just get the aura and sight problems.  I have found that my exposure to light (especially fluroescent seems to triger them)  I work in a very bright office and things have just been getting worse. It’s to the point now that I’m not sure where one migrain ends and another one begins except for the fact that when I’m not exposed to the bright light they are not as frequent. The problem is not just with the lights in my office but any where I’m exposed to a bright light. Even getting high-beamed on the road.  SHort of leaving my job ( which will be in the future anyway) is there anything that I can do. I had thought of getting those glasses that get darker when things get brighter.  Does anyone think that this will help. Thanks Elizabeth P.S. Could someone send me the FAQ that I heard about.

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I am also very sensitive to lighting, especially when I’m on the verge of or having a migraine.  I bought a pair of glasses that darken and that did help quite a bit.  At work they replaced the fluorescent (?) bulbs with some that work differently.  They give off a slightly different color light but I can’t remember what they are called.  Hopefully somebody else will read this and give them a name.  Anyway that helped for a while and then we ended up just taking the 4 bulbs that were right above out altogether and I use a low lamp.  Works really well. Good luck to you! Stephanie in OR – Hide quoted text — Show quoted text – Hello everyone. I’m new to the group and I’m learning a lot of great information from you all.  I have a question.  I get migraines very frequently.  The seem to happen in two different way. I get migraines that start with the aura, then an upset stomach, then pain.  Sometimes the aura leads to almost temporary loss of sight. Although sometimes I don’t get the pain of upset stomach at all and I just get the aura and sight problems.  I have found that my exposure to light (especially fluroescent seems to triger them)  I work in a very bright office and things have just been getting worse. It’s to the point now that I’m not sure where one migrain ends and another one begins except for the fact that when I’m not exposed to the bright light they are not as frequent. The problem is not just with the lights in my office but any where I’m exposed to a bright light. Even getting high-beamed on the road.  SHort of leaving my job ( which will be in the future anyway) is there anything that I can do. I had thought of getting those glasses that get darker when things get brighter.  Does anyone think that this will help. Thanks Elizabeth P.S. Could someone send me the FAQ that I heard about.

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I get very photophobic as my migraine worsens….though I’ve always been sensitive to bright lights and sunlight anyway. I have found a couple things that work to lessen the effect though… If you wear prescription glasses, make sure you get the glare protection on them. It cuts down on the effects of flourescent lights, street lights and headlights while driving, and even the light from the computer monitor. It doesn’t have a visible tint either, so it doens’t affect your ability to see through the lenses. There’s a special kind of light bulb you can buy that gives light through the whole spectrum, as opposed to just blinding you with certain "frequencies" (I’m sure there’s a right technical name for what I mean, but damned if I know what it is right now). I know you can get them through a catelog called The Pyramid Collection 1-800-333-4220 or (http://www.pyramidcollection.com). They can get kinda pricey, but they last a long time and they’re worth it! I noticed someone else mentioned sound frequencies contributing to it too….sound is more of a trigger for me than light, but I think this is because my hearing is better than average and my sight is terrible. I can’t bear high pitched sounds….torture for me would be to listen to a soprano. Raven "These were the `gay Delavals,’ the most charming, mischievous, spendthrift people in the North of England, utterly without morals, loved by the people of

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if I fall asleep will you cover me all up in sand Karen – Hide quoted text — Show quoted text – May I extend an open invitation to any one on the ng that lives in and around Connecticut to please come and use our beach and dock.  The public and and state beaches are filled to over flowing…  I have a beach,   dock and huge wonderful shadey Maple trees. I have life jackets for children or bring your own.  Please email me and let me know you would be coming.  Please please take advantage of this.. Ronnie a.k.a.  RonMum Queen Of Hugs

– You Are Not Alone http://www.geocities.com/HotSprings/Spa/7379/karen.html

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– Hide quoted text — Show quoted text -May I extend an open invitation to any one on the ng that lives in and around Connecticut to please come and use our beach and dock.  The public and and state beaches are filled to over flowing…  I have a beach,   dock and huge wonderful shadey Maple trees. I have life jackets for children or bring your own.  Please email me and let me know you would be coming.  Please please take advantage of this.. Ronnie a.k.a.  RonMum

Love to, but you’re just *so* far away:-) Hugs, helen S

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Oh, Ronnie!  That sounds so wonderful!  Boy, do I wish I lived near you, instead of all the way across the country!  Enjoy some ocean for me, okay? Take care, Jackie K

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May I extend an open invitation to any one on the ng that lives in and around Connecticut to please come and use our beach and dock.  The public and and state beaches are filled to over flowing…  I have a beach,   dock and huge wonderful shadey Maple trees. I have life jackets for children or bring your own.  Please email me and let me know you would be coming.  Please please take advantage of this.. Ronnie a.k.a.  RonMum Queen Of Hugs                

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May I extend an open invitation to any one on the ng that lives in and around Connecticut to please come and use our beach and dock.  The public and and state beaches are filled to over flowing…  I have a beach,   dock and huge wonderful shadey Maple trees. I have life jackets for children or bring your own.  Please email me and let me know you would be coming.  Please please take advantage of this..

Don’t be surprised if you hear a Harley coming down your road!! THANKS RonMum-you’re a gem! Dana – Hide quoted text — Show quoted text –

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Mum, you are the greatest Mum around! I will take you up on the offer, but it may not be until my next vacation…sometime in May ‘99:-( I am taking a vacation this year in August to NC for 5 days in the mountains near Bakersville. Anyone within driving distance??? ~Miki ..the early bird gets the worm, but the second mouse gets the cheese…

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I am very easy to find off the interstate I95…  If this old Polock can find her way back home the house shouldnt be too hard to find..  Towels, drinks and food you all bring… I will supply the beach and water…  :) RonMum Queen Of Hugs                

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- Hide quoted text — Show quoted text – May I extend an open invitation to any one on the ng that lives in and around Connecticut to please come and use our beach and dock.  The public and and state beaches are filled to over flowing…  I have a beach,   dock and huge wonderful shadey Maple trees. I have life jackets for children or bring your own.  Please email me and let me know you would be coming.  Please please take advantage of this.. Don’t be surprised if you hear a Harley coming down your road!! THANKS RonMum-you’re a gem! Dana

Well RonMum. I think I’m still recovering from your birthday party!  If I was that far north (I’m in Maryland), I’d take you up on it. So I’ll send my virtual… the kidlet would crack everybody up jumping in the water from the dock, climbing out and doing it again for about 3 hours straight! He’s close to learning a cannonball ROTFL  <he’s only 5 and doing fabulous in the water. Me, with discoid lupus, would be under a towel and umbrella, with 75 sunscreen and will venture into the water for about ten minutes every 2 hours.  So bring me a nice cold raspberry dacquiri and when it’s time for dinner…just tell me what you want to eat, and I’ll cook for the crew , as long as there’s wine in the kitchen while I’m cooking .  I’ll bring my own knives . hugs and thanks for the invite RonMum! — Mary f.        <No Kitty!  it’s MY POT PIE!           _         _                (       / )      |  ) ) _,,,/ (,,_                /, . ‘`~   ~-.  ;-;;,_                 |,4)     -,_. ,  (  `’-’    ’-~~’ (_/~~’  `-’_) It’s a widdle,widdle, widdle pud (She’s not big on sharing, is she?) http://home.earthlink.net/~maryf

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that’s it Karen!!  You can attend the faire as a sand castle!! Jan :*)

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Where are you Jackie?  I’m in Texas and we could turn it into a road trip…anyone else??? Jan :*)

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I don’t live in CT, but can I drive up from Texas…..Please??

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Tell me what airport is near you and I will send my private jet for you.  This one is much more confortable than the last one this one has a hot tub thanks to Bob and his credit card.. No kidding about the beach tho              and no kidding about the              use of the credit card..  :)              Its the house from last               month bill… Wait until you               get this months bill  !!! RonMum Queen Of Hugs                

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can I pitch a tent and stay a couple of days??? Jan (have tent, will travel)

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This really deserves a comment, but I’m to weak to take all the flack it will bring <g.  (Pulling down his ball cap and putting on his darkest shades) Marty

Yo! And *don’t* you look cool:-) Hugs, Helen S

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This really deserves a comment, but I’m to weak to take all the flack it will bring <g.  (Pulling down his ball cap and putting on his darkest shades) Marty – Hide quoted text — Show quoted text -We will be easy for Capitian RugBurn to see we will be the naked women laying on the beach..Our beauty being reflected on the water ..among other things… Grandson’s first 10 year old All Star Game..  Top of the 4th they were ahead by 14 – 2  .. Mercey Rule.. Game over….  Tony drove in 8 !!!!! RonMum Queen Of Hugs                 Don"t Be Reckless With Other Peoples Hearts… Don’t Put Up With People Who Are Reckless With YOURS

Marty, Keep the wind in your face, the rubber on the road, and the bail money in yer pocket.

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Jan remember what I said about black mail…  But I will be good if you give me Mr. Hats address..  :) Just all bring a mouse trap…. You got it Tek they are back this morning. Who the heck has been employing this little buggers!!  This time its a Rolls Royce !!!  Helen send the cats!!! Mine are playing wussy again…  :) RonMum

I knew it, I knew it – you HAVE to tell Bun to quit chasing mom cat away – she was keeping you Mousie free… I still have a call out for the Feline Terminator – but you know that if Bun puts his foot down, Bun will have to get all those mousies himself!  And Momcat NEEDS all those mousies cos she is eating for 6! Tek (Yes this is an in joke – and neither RonMum nor Bun is being abusive nor cruel to the cat – who may be a wild or abandoned one; just being cruel to the mousies so RonMum does not have to put up with stinky walls with holes in them again!)

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We will be easy for Capitian RugBurn to see we will be the naked women laying on the beach..Our beauty being reflected on the water ..among other things… Grandson’s first 10 year old All Star Game..  Top of the 4th they were ahead by 14 – 2  .. Mercey Rule.. Game over….  Tony drove in 8 !!!!! RonMum Queen Of Hugs                 Don"t Be Reckless With Other Peoples Hearts… Don’t Put Up With People Who Are Reckless With YOURS

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hey I can do even better than an address, I have mr. hat’s phone # Jan :*) "If we never experience pain, how then can we recognize joy?"

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Jan remember what I said about black mail…  But I will be good if you give me Mr. Hats address..  :) Just all bring a mouse trap…. You got it Tek they are back this morning. Who the heck has been employing this little buggers!!  This time its a Rolls Royce !!!  Helen send the cats!!! Mine are playing wussy again…  :) RonMum Queen Of Hugs                 Don"t Be Reckless With Other Peoples Hearts… Don’t Put Up With People Who Are Reckless With YOURS

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Lea, we gotta pick up Diane in Chicago…..anyone else, oh Mum..I will be sending our grocery list soon hehehe Jan :*) "If we never experience pain, how then can we recognize joy?"

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; of course you can Marianne……we will all just crash her beach, my tent ; sleeps 10..my car is a Saturn though….anyone with a mini-van out there? ; Jan :*) ; ; "If we never experience pain, how then can we recognize joy?" Me Me Me, I have a mini van.  Jan, you and Marianne grab whoever wants to come from Texas(my old home) and meet me in Montgomery, Alabama.  Then we hop in my mini van and grab anyone else between here and Ronnie’s house. I’ll bring my sleeping bag!  See ya soon! Lea —  Lea Jackson, Montgomery, Alabama  http://www.mindspring.com/~ljackson/leahome.html

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Hey I’m in Texas too! Can I come along? Marianne TX Complex Migraineur

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hey Ronnie, can you put up with both of us camping on your beach, we could have one heck of a party, biting bananas and such <vbg Jan :*) "If we never experience pain, how then can we recognize joy?"

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of course you can Marianne……we will all just crash her beach, my tent sleeps 10..my car is a Saturn though….anyone with a mini-van out there? Jan :*) "If we never experience pain, how then can we recognize joy?"

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Where are you Jackie?  I’m in Texas and we could turn it into a road trip…anyone else???

Yeah, pick me up in Chicago!   Judy "In that night there was music in my mind . . . And through music my soul began to soar! And I heard as I’d never heard before . . ."

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You are right Lukas, not only is this confusing for us, because we all want to understand what is happening and why.  But when the doctors can decide, then one starts to feel lost and let down.  Hang in there and at least get as much relief from your symptoms as you can, but I would also suggest that you keep trying to get a referral to a rheumatologist, get some of your questions answered.  I think we have to be persistent for the sake of our own health, physically and emotionally.  Margaret

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I went to Jackson Memorial Hospital Dermatology Clinic last wednesday, Like always a doctor I’ve seen before took my appointement, They come in gorup and discuss whetter they should or not reffer me to a rheumie.I guess not yet… They did’nt take my my brain fog episode too serious; my fotosensitivity also. They told me that my blood tests do not show anything to corroborate it, though my ANA tests arent normal.  I got a couple of shots on the scalp ’cause I’m really going bald…..And , yes, I have discoid lupus, atralgia (?), and the scarr on my left breast is morphea, but is not scleroderma…….???????? Finally ,they all agree, at least, that I do need my plaquenil,Temovate gel for the scalp, and Lyc-Hydrin for the rashh all over my body.This is awful… Im just going to stick with my meds and forget about this people,docs are so confused….. Lukas we…@worldnet.att.net Thanks everybody for all e-mails and replies, it meant a lot to me. Peace.

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I know it is a lot of reading, but I urge you to read the info about vchronic illness at:  http://www.serve.com/licorice Red how the cause of most of your health problems is increased cytokines and nitric oxide and how improving your red cell health is the best thing you can do. I bet you been told many  times that your were anemic or at least borderline anemic, but none of your lupus doctors did much about it. Please, for you on good, read my rough noters and try to understand them.  You will be helped by this uinderstanding. DW – Hide quoted text — Show quoted text -MCLAUGHLIN wrote: > I went to Jackson Memorial Hospital Dermatology Clinic last wednesday, Like > always a doctor I’ve seen before took my appointement, They come in gorup > and discuss whetter they should or not reffer me to a rheumie.I guess not > yet… They did’nt take my my brain fog episode too serious; my > fotosensitivity also. They told me that my blood tests do not show anything > to corroborate it, though my ANA tests arent normal.  I got a couple of > shots on the scalp ’cause I’m really going bald…..And , yes, I have > discoid lupus, atralgia (?), and the scarr on my left breast is morphea, but > is not scleroderma…….???????? Finally ,they all agree, at least, that I > do need my plaquenil,Temovate gel for the scalp, and Lyc-Hydrin for the > rashh all over my body.This is awful… Im just going to stick with my meds > and forget about this people,docs are so confused….. > Lukas we…@worldnet.att.net > Thanks everybody for all e-mails and replies, it meant a lot to me. Peace.

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