LUPUS? DERMATOMYOCITIS? WHO KNOWS?

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HAPPYFEET
New Member


Date Joined May 2007
Total Posts : 6
   Posted 5/30/2007 10:13 PM (GMT -7)   
    Hi everyone,
 
I'm new at this site not that i really want to be but i guess you all probally feel the same way i'm sure of it.
well i've been sick since jan 07 and still struggling to find out what i have.  The first dx was dermatomyocits the doctors have taken 3 biopsies of my muscle 2 on my legs and one skin biopsy for the rash 2 came back unconclusive one of my leg bx. has not come back its being done by muscular distropy for dx i have been through so many tests unbelievable and they still don't know what i have i recently did lab work ana titer is at 1:160(A) my iga and igg are also high my igf binding protein is low igg serum is high i don't know what this all means but has any one had these test done and has lupus or dermatomyocitis i have severe skin rash on my chest and on my right arm my feet just started swelling fatigued and i cant sleep pls help i feel so scared i'm also having other test done spinal tab and several other test.
thank you so much and god bless each and everyone of you
Happyfeet....
I want to share with you the reason i picked happy feet is because when i first became ill with this illness i was in a wheel chair i recently was able to walk on my own a month ago i was so happy to be able to get my strength back and i thank god every day to be able to feel better each day i know if i have lupus it probally wont stay like this i have such bad days but the good days i enjoy every minute of them..thank you for listening

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 5/30/2007 11:40 PM (GMT -7)   
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
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


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 5/31/2007 7:12 AM (GMT -7)   
Hi happyfeet and welcome (I love your name too). I don't have a lot to add to what Pat told you - she did a great job of explaining things. I agree that a lot of your symptoms are present in lupus, but as I'm sure you have found out it can take a while to get a diagnosis because so many autoimmune diseases and other diseases share similar symptoms. It sounds like you have been through a lot and I am so glad that you have been able to walk on your own again - what a triumph!

There are other people here who are in diagnosis limbo too and most of us have been there during the early stages of the disease so you are among people who understand what this is like. Just don't give up looking for answers. What doctors have you been referred to? A rheumatologist would be the specialist you would see for something like lupus. I am sorry about everything you have been through and I don't blame you for being scared. It's scary to get so sick and to not know what is wrong or what is causing the symptoms.

Please feel free to ask any questions and know that we are here for you if you are having a rough time.

Take care and I'm so glad you joined us.
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

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



HAPPYFEET
New Member


Date Joined May 2007
Total Posts : 6
   Posted 5/31/2007 12:43 PM (GMT -7)   
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 nono but mean while 6months later no treatment yet confused 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... yeah
Thank you all god bless..
Happy Feet

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 6/1/2007 7:05 AM (GMT -7)   
Happy Feet, it took me about 3 years to get diagnosed. I got the same run around you are getting. I was told I had an autoimmune disease but the rheumy wasn't sure what - she kept calling it "lupusy". As I got sicker and sicker she wouldn't do anything different with my treatment so I went to another rheumy for another opinion and he diagnosed me and started me on prednisone which has helped a lot, although I still have flares.

I have never gotten as sick as you have thoug, so I can't imagine the frustration of being that sick and not knowing what it is and also not getting adequate treatment for your symptoms. It sounds like you might need to see a different rheumatologist - a lot of us have to go through several before we find someone who really listens and will work hard to help make things better. I finally found a decent one on the third try.

I'm really hoping your get some help and some answers soon - at the very least your symptoms need to be treated.

Hang in there and 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

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



HAPPYFEET
New Member


Date Joined May 2007
Total Posts : 6
   Posted 6/4/2007 10:29 PM (GMT -7)   

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 nono 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 smurf Goodnight


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 6/5/2007 1:27 AM (GMT -7)   
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.

Pat
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


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 6/5/2007 7:32 AM (GMT -7)   
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

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums


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