Last December it started with open sores, rash like on my legs, the doctor diagnosed it as psoriasis. A month later the joints started to hurt so they diagnosed it as psoriatic arthritis. A couple months later in March I was driving to work and my middle finger turned completely white and was very painful. They diagnosed that as Raynauds disease, which is usually seen in auto immune disease, but not psoriasis. So they did all the blood work and came back ANA positive and DNA direct positive. The blood work was repeated 4 times over the last several months and they keep coming back positive so they now added Lupus as another diagnoses. The podiatrist can see the changes in my x-rays of my feet and agrees with the PsA diagnoses but also says there is some nerves issues going on as well. Any advise anyone could share would be much appreciated
Dawn,
I'm sorry I can't really offer much for you. I have been diagnosed with Mixed Connective Tissue Disease. I have a positive ANA but none of the other tests tell them anything. She basically told me that I tested positive for Lupus and RA but that I didn't have all the proteins to be diagnosed with either. My rheumatologist just says I'm Lupus Like. But I also have the rash on my legs and on my scalp. I saw in my records that she has me diagnosed with psoriasis, but she never mentioned that to me.
Both of the diseases you mentioned are auto-immune diseases. I would think it would be very likely that you could have both.
One of my daughter's has Lupus and along with it she has Raynaud's disease. I have another daughter with MS.
I'm going to see a new doctor for a second opinion in December. I wish you luck. These auto-immune diseases are confusing and you really need a doctor that will take the time to explain things to you in a way that you can understand. This group is also a great place to learn.
Cathy In MD
Thank you. I am also seeking a second opinion but trying to find the right doctor is hard. Good luck on your second opinion, please keep me updated
I do ,in fact I haven’t been diagnosed with the psa but after a long research on internet I see that I have both.
I can’t advice you because it’s very difficult to diagnose.In my case first was lupus and a year later I started to have a rush with dry pealing skin on my elbows and knees with arthritis pain.The lab didn’t show that I have psa but it’s very hard to detect in the beginning
I'm sorry I can't be very helpfull. Make sure to take as good care of yourself as you can. Always get a second opinion if you feel that you are not getting the care you need. These aouto imune conditions are frustrating and exausting. I've learned a lot here.
Aria, have the dermatologist do a punch biopsy of your skin. That’s how they diagnosed my psoriasis. Thank you both for replying. It helps to know that there are resources and support out there
Dawn, it seems when the immune system messes up, it causes multiple autoimmune diseases. I rarely mention all of mine anymore because the normal layman can't believe a person can have so many diseases at once. My mom had Lupus and Psoriatic Arthritis. She passed just a couple of months ago. She got a cream called Clobetasol that worked like magic on the rash, and she was on morphine for her multiple painful conditions and PsA. Have you been given Clobetasol yet?
Sheila
I have so many autoimmune diseases, I don't want to list them. But, the best thing for me has been the web and this group. I'm always trolling (surfing) to find out info about each one. If I don't understand, I continue to read. Really helps with decisions re my care.
Have bulging discs up and down my spine. My options were epidurals (cort shots at the sites) or surgery where my vertabrae would be fused. Feedback from this group helped me make an informed choice (epidurals).
You got to hold on!
I have Sle does anyone get sores in their mouth. I get them from time to time but today theres so many i cant talk or eat.
Sheila, I have not tried that but all the open sores and rash cleared by itself. Tried three different prescribed creams nothing helped. I used a homeopathic cream it helped some. Stopped using anything and it cleared up. Now I have really bad joint pain. Trying to take care of two small children all day can be a struggle. My husband is working 12 hours a day to make up for me not working
Stacy,
I have what they are calling Mixed Connective Tissue Disease. I get the sores in my mouth. As soon as they get started, I start using Orajel Antiseptic Rinse for Mouth Sores. It comes in an Orange flavor and it seems to help a great deal. Every time I have brought it up to my rheumy, she has just shrugged me off.
Good Luck,
Cathy In MD
Stacey said:
I have Sle does anyone get sores in their mouth. I get them from time to time but today theres so many i cant talk or eat.
Dawn,
I also had to quit working. You may be eligible to file for disability. I am in the process of trying. I have been denied once and am now appealing it. It is a very long and frustrating experience, but as long as you know that going in.... and you have a doctor that will back you up, you may have some success.
Cathy In MD
Dawn said:
Sheila, I have not tried that but all the open sores and rash cleared by itself. Tried three different prescribed creams nothing helped. I used a homeopathic cream it helped some. Stopped using anything and it cleared up. Now I have really bad joint pain. Trying to take care of two small children all day can be a struggle. My husband is working 12 hours a day to make up for me not working
Try a naturopath doctor for the open sores.
My sister tried all kinds of products, prescription as well as over the counter. Her brother in law, was an Naturopath doctor back then, he is now a MD as well, well he took complete history of the rashes, disease etc, what helps, how long. What did not, about her life style basics ...took over hour for this background.
He told her to take i believe complete B vitamins, was specific and something she had not tried and i know she did take b vitamins if tired etc back then. This was in 1980's, late 80's. Well it did clear up her rashes and she had them bad on soles of her feet and palms of her hands. Was so bad her feet bled if she tried to wear nylons i remember. After like month of taking the vitamins he gave her, she could wear nylons!
I myself have mixed connective tissue with lupus, RA, reynauds and other diseases mixed in. One thing we do have here in my tiny small town is naturopath doc, and he has been able to help but he is at least honest when he cannot.
Cathy,
i hope you ask your doctor about the diagnosis. This is pet peeve of mine when doctors do not tell us, their paying customer and patient, the truth about our own health. Please ask her and find out if she really believes it or is there a reason why she did not tell you. Sometimes they suspect it but do not have proof so they will not tell the patients because many hear it as they have it or do not depending on how their explanation is worded.
IF she says she suspects it, ask what tests etc needed to find out, Like keeping a health journal with specifics that might enable her to finally fit pieces or help with tests she might need to order. ,
i agree so much about how important it is that we get doctors who will take the time to explain in somewhat detail about disease(s) and where else you can get reliable information. Especially since internet is full of unreliable places.
Hi, Dawn, if you haven’t yet joined, check out our PSA community as well. Great bunch of caring, informed folks.
Laurie