LUPUS? DERMATOMYOCITIS? WHO KNOWS?

Happy Feet, Welcome to the forum. I love you name and think you have a great positive attitude. But I know you are scared. You have really been through it and it sounds like you have a ways to before you finally have a diagnosis.

I'm not familiar with a lot of what you've been going through, but some things definitely sound familiar. My ana is elevated and I have lupus. The severe skin rash on your chest and arm sound like lupus sores, and of course debilitating fatigue is something that all of us lupies suffer from.

That doesn't mean, though, that these can't be symptoms of something else and it sounds like you have doctors who are really doing their best to get a diagnosis.

There are other people here who have different autoimmune diseases and I'm sure they'll check in with you to both welcome you and to share their knowledge and experience with you.

In my case, my disease comes and goes. I have good days and bad days, but I've reached a point where I know what my limitations are, when to get out, and when to rest. Through trial and error I've learned to listen to my body.

I'm so very glad you decided to come here for support. This forum is full of great folks who support each other and welcome newcomers with open arms. Some of us check in nearly every day and others pop in from time to time. It's a great place to vent, to ask questions, and to talk to other people who understand just what you're going through. And being scared like you are, you certainly must need a support group to help you through this. That's what we're here for.

Lots of luck Happy Feet, and I hope to hear more from you.

Pat

Hi Patty and Hippimom 2,

Thank you both so much for replying to my posting.  how long did it take you both to be diagnoised? do either of you work?....

i work for Kaiser Permanente, So. CA. Medical Center so i have very good insurance but i seen several rheumatologist and dermatologist. The first rheumatologist stated well your test are kinda of still elevated but i will not treat you because i'm not sure you have dermatomyocitis because all your test are coming back somewhat normal see you in 6wks for f/u wow....i sat there in tears knowing how awful i feel and this rash and everything else that goes with it, i said no there has to be something done so i went to the dermo. he seen me and right away diagnosed me with dermatomyocitis then he sent me back to the same dr. she said no i will not treat you because your Ck's went down and it's very risky putting you on high doses of steriods when  were not sure, i could understand that but what do i do?????so i gave up on Kaiser and called Muscular Distrophy in los angeles they have a grant program so i qualified and i've been going there, they are great, they haven't given up on me yet but mean while 6months later no treatment yet is this right? i was hospitalized for 3w and they still didn't know whats wrong with me they say i have a autoimmune disease but they don't know which one...when i first got sick my stomach had this terrible pain i thought i had gall stones then the next day i couldn't lift my legs they were so weak and heavy  then my upper body sooo weak i felt so hollow it was wierd i really felt like life had left me...... i ask the doctors is this how i'm suppose to feel they didn't answer me i'm sure everyone is different but some symptoms have to be the same the pain i know is... but the waiting for tx and everything else i was in a wheel chair for 5months because i was so weak i couldn't climb stairs i still have a problem putting my clothes on no weakness but the pain is awful and of course feeling tired all the time if you can answer some of my questions i would be very happy...

Thank you all god bless..

Happy Feet

HI Hippiemom2,

How did they determine you had lupus? what were your symptoms? at the time they diagnosed you? Muscular distrophy dr.is 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 but of course i'm not giving up all the delicious foods until the Doc tells me to..how 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 Goodnight

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