I am in the Rochester area...
oh and there is no parking in the parking deck at my arrival time. Lovely. Just loving how they arrange all this. it is like no one plans anything they just pull numbers out of the air and expect it...
it means there is a good chance you have lupus but everything else has to be ruled out first because lupus is the great immitator....
well, for 5 minutes of do you haveany last minute questions my surgeon earned 250. I had no questions and wasted 4 hours of my time fore the visit. I wish these visits could be done via phone. I am...
I did fine....
Barb is always in my prayers and Ihope they do more than baby asprin...
Had hospital pre-op they took 2 hours to do 15 minutes of work up. Monday I do surgeon pre-op and God only knows how long that will take except he treats me like an intelligent human being instead of...
I feel like I can't breath. My sinueses r allinflmmed and Evey time I lay down I feel like I am suffocating. Any idea? I am temporariliy off imuran due to live functjon tests too which is the only...
my weight loss surgery is finally scheduled for the 27th with preop the 25th and post post the 8th. I can't believe it is finally happening....
i saw this informercial for a product called Wen dunno anything about it but it isn't shampoo and is all natural...
we all have days like that. have you considered applying for hore help from th state most states offer that kind of help you just need a doctor to say you need it....
you should never just stop prednisone. it is dangerous and can be deadly. Always come off with a doctor's supervision and SLOWLY. There are other meds out there like imuran, cell cept, plaquenil,...
such a small dose isn't likely to cause moon face but it has in some people just so you are forwarned. don't let that stop you taking it tho. you need to listen to your doctors no matter how it makes...
they have proven there is a genetic link just not how much of one. they are actually trying to do research into just that subject with sisters 1 who has lupus and 1 who is healthy I can't recall the...
I lucked out with my latest rheumy, he was shocked I suggested a medication that is being used at U of M because it is old and he had never used it but he was happy to look into my suggestion. Now...
fevers are a lupus symptom. May I suggest The Lupus Book by Dr Wallace for self education and perhaps those closest to you to read and learn more. Lupus used to be a death sentance but today we can...
siezures is one of the signs of systematic lupus but not discoid as far as I know....
May I suggest The Lupus Book by DR Wal.lace? It is an excellent resource. Aleso the resources section at tha top of the forum is helpful. Anther place to go is lupus.org...
actually my husband suspected my dx long before I did....
I am so sorry that doctor didn't contact you. You might have to consider talking to a lawyer about your rights because it strikes me as malpractice but I am no expert. I am so sorry all this is wrong...
Actually I am having the same problem lately. I also have to pee every hour or so....
may I suggest The Spoon THeory just google it and it will help somewhat. Also are you being treated? I ask because treatment can help with fatigue....
not familiar but TAKE PICTURES!!! Take pictures of any rash or skin issue just in case for the doctor....
I am sorry that you feel unsupported. It is always sad when people leave, especially when it is over something like what you are saying you feel. I wish I thought I could say something to change your...
WOW, all I can say is you have been through the ringer. You need to prepare your children for what is to come you need to make it clear you are ill. Very ill. I am sorry but an international move at...
welcome to hw you couldn't find a better bunch of people to support you through this horrid disease...
see a dermetologist right away and get picture of the rash and any other rashes. believe me some have gotten their dx via dermetological work up....
arde you near a major teaching hospital? often times they will have a sliding scale fee based on income all you have to do is apply....
I am sorry you aren't doing well. I have been on prednisone and Imuran for over 2 years now and yes you will be more vulnerable to infection if you take it long term. I have had 2 skin infections...
shoeless I would find another rheumy. simply put you should be being treated based on symptoms not blood work. Blood work especially ANA is not the end all be all of diagnosis. there are 11 criteria...
I have lupus and RA it took more than 14 years for me to get a dx. I doubt all will be figured out in time for next August. I wish I could type more but am shaking really bad....
I use pain patches, vicodin, and tramadol for pain. I have spinal issues too though and my pain is extreme. I have heard of people on this board using something called voterin (sp) gel that helps...
thanks. I know we all likely need to stock up. I sit in the dark most of the time now because light is giving me headaches....
I have to use the wheel chair the store provides to go shopping. At first I wanted to cry every time. Now I just accept that what is is and if I want to do things I have to work with my limitation....
My ANA is negative and always has been but I have lupus and RA. Actually all my blood work is normal CRP SED ect.... Only my liver enzymes are elivated and that is from fatty liver. I wish I could...
I have been on imuran for a while and no weight gain despite being on high doses. I have had some liver enzyme issues and have to d/c for a week but otherwise am doing fine with it....
some things can be slightly elivated by dehydration and other minor issues, and if they were only slightly high then he might want to wait and see if they continue to be elivated. I am not a medical...
apparently my liver enzymes are up from last time so now the rheumy wants me to skip a week of Imuran and retest to see what happens....
a dose pack might be just the thing for you right now. Prednisone has been a godsend for me and it helped my hubby through some rough patches in the past. I say go for it because it is not like long...
I found it in The Lupus Book by Dr Wallace, 3rd edition pages 216-7. Also U of M is using it for that purpose. It is supposed to begin working within 1 month and the major side effect is yellowing of...
quinacraine and plaquenil work together and better manage fatigue than either one alone. I have no idea on the dhea I only know if it is otc I can't afford it. the otc stuff comes in such small doses...
Well, my rheumy wants me to increase my imuran to 250 instead of going back up on the prednisone. He is researching quinacrine and dhea to decide what to do about my fatigue level. I am so glad I got...
I would run fast and far from this doctor and see 2 specialists 1 in lupus and 1 in lymes. I would also find a new pcp just simply because this guy sounds like he could care less what is happening...
I am so sorry for your loss, well actually all of our loss as Donna was a valuable member of this group. I hope that eventually you can find some peace in knowing she is no longer suffering....
welcome and sorry you are suffering from lupus, it is a horrid disease to have....
http://www.hgsi.com/belimumab.html http://www.hgsi.com/BENLYSTA.html That is the best I could find as far as info on the drug goes that is current or looks to be current anyway....
you can have negative blood work and still have an autoimmune condition. My blood work is all neg yet look at my signature. Low positive can happen as a fluke but you really need to see a lupus...
just to warn you it can take MONTHS or even a year to get full benifits from plaquenil and most of us don't realize how much it does until we decide it is doing nothing and go off of it. but it is...
I am one of those negative ANA lupus suffers. Take a look at my signature and know that except for a high white cell count all my blood work is normal....
I wish I could do more than offer a shoulder and that it won't always be this bad, once they find the right meds for you you will start having good days again....