Posted 6/5/2007 12:29 AM (GMT -6)

HI Hippiemom2,

How did they determine you had lupus? what were your symptoms? at the time they diagnosed you? Muscular distrophy ordering me a spinal tab i will be having it done tomorrow 6/5/07 ouch...are you on any type of special diet everyone is telling me i have to change my diet nono but of course i'm not giving up all the delicious foods until the Doc tells me do i get the doctors to give me something for this.. i've been sick 6months now and no treatment..are any of you working? how is that going? i get so stiff and pain everywhere i can't even hardly get myself dressed in the mornings  i don't know how it would be going back to work am i dreaming or is it reality that i would n't be able to i really don't know whats ahead of me or what i need to look forward to. I've been out of work for 6months and my job says they could only hold my position for one yr and then i would be terminated does anyone know what i could do or has anyone been in this position...the scary part is i'm not sure of my dx yet i just hope and pray that it's something i could handle and treatable so i can go back to work asap.

Thanks again,

Happyfeet smurf Goodnight

Posted 6/5/2007 3:27 AM (GMT -6)
Happyfeet, it took years for me to get a diagnosis and by then I had retired. Hippi is right about suggesting that you might need to see another rheumy. I'd advise you to keep a list of every single symptom you have or have had, and add to it as more problems arise. When you go to the doctor hand him or her a copy of it. And ask questions. Lots of questions. So many doctors try to rush you right out, but I find that they'll usually sit there while you ask questions --- if you have a written list of questions. It makes it harder for them to ignore you.

You're doing the right thing by being proactive in your search for answers. Just know that when you come here you're among friends who really do understand.

Please let us know how everything progresses.

Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, cymbalta, tramadol, lunesta, actonel, meridia, tricor, aciphex, multivitamin, calcium w vit D, fish oil, aspirin

Posted 6/5/2007 9:32 AM (GMT -6)
Happyfeet, it took me almost 3 years to get a diagnosis and it took the third rheumy I saw to make a diagnosis. The second rheumy I saw was alright and she kept saying I had something "lupusy" but she wouldn't go ahead and give me anything more than plaquenil (which worked great at first) as I got sicker and sicker. I was so sick by the time I saw my 3rd rheumy I could hardly walk because of the pain. He basically looked at me and the list of symptoms I had and diagnosed me that day and put me on prednisone which has been a huge help, but I hate the side effects. Prednisone is the one med that has helped me the most. I'm surprised with how much pain you are in that they haven't tried it for you yet. I have a big list of symptoms which include: joint pain with some swelling, fatigue, butterfly rash on face, sun sensitivity, mouth sores, hair loss, headaches, weakness, brain fog. I also have positive labs that include positive ANA, elevated sed rate, elevated CRP, protein in urine.

Other people might tell you different, but I wouldn't worry too much about your diet right now - you have enough on your plate to deal with. Just try to eat as healthy as you can. People try to be helpful and I think one of the things that well meaning people think can help is some kind of special diet. There are people here who have said they have benefitted from a gluten free diet, but I haven't had the energy to try to figure out how to do that yet. Like I said, I think you've got enough other stuff going on right now that you don't need to worry too much about your diet right now (others might disagree with me).

I'm sorry you have to go through a spinal tap today. I've never had one but they sound scary. I'm hoping the test goes okay for you.

Just don't give up - someone has to be able to figure out what is goin on with you sometime. I know how hard it is to wait and be in limbo when you feel so sick. I'm also sorry to hear about your job. I finally had to quit my job after being there for over 9 years because I just got too sick. I am fortunate that my husband has a good job and we can make it on his salary. I don't want to go through the torture of filing for disability and the nightmare that it can be to try to get it, but it is always an option for you, especially with how severe your symptoms are. You usually get denied several times and have to appeal and then usually have to have a hearing.

My thoughts are with you today. Let us know how things went when you are feeling up to it.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops



Please allow HealingWell to continue helping others by donating:


Co-Moderator: Lupus and CFS Forums

Forum Information

Currently it is Thursday, October 18, 2018 9:46 PM (GMT -6)
There are a total of 3,013,069 posts in 329,996 threads.
View Active Topics

Who's Online

This forum has 161912 registered members. Please welcome our newest member, Bobby311.
197 Guest(s), 4 Registered Member(s) are currently online.  Details
HeartsinPain, Vdang2k , 61Impala , Dollface29