charbaby (@charbaby)

Well anyone with the 1st 3 diagnosis’ will certainly end up with depression and anxiety!! I hope you are getting good treatment with your diagnosis. I am doing well, if it weren’t for intolerance for heat and fatigue I would feel great. I think the acupuncture helps me and I’m sure the methotrexate, which I am in the process of tapering off of, is helpful. I am trying hard to eat fresh veggies that are friendly to reduce inflammation. Diet is important. I have stayed away from chemicals as much as possible including no hair color until a month ago. I called my derm and told her I was depressed and was pretty sure it was related to my hair being grey! She ordered me to go see my hair stylist daughter and when she finished I cried i looked so much more like me!! I may be 62 but see no reason to look it!

Susie how did it go with the consult in Chicago? Are you on a treatment plan that is improving your situation?

Wow, This is great news! I am curious about your diet. I know organic is best with any AI disease and I use cooling herb teas and foods but curious about your opinion of what hurts you. I see an acupuncturist and he is constantly fighting the heat in my body with needles and working to keep my energy level decent. He has been a big help but I have been taking methotrexate 25 mg just tapered to 20mg and will continue to taper. My derm is on board with the acupuncture my rheum. lets say he is not negative but I can read that he is skeptical by his lack of affirmation! My final diagnosis is dermatomyositis and probably caused by a benign tumor on my spinal cord that has been an issue for 10 yrs. All my docs are thrilled with how clear my skin is now they thought I would have much more scarring. When I look back at the medical photos I think, it’s a miracle. I do get fatigued easily and conserve energy as much as possible and believe in naps! I have only been dealing with this a year so feel blessed to be where I am. I am optimistic that it will never return and I’ll give God the credit. I have been through a really rough year loosing my dad March 23,11 then watching my down syndrome brother go downhill quickly and loosing him March 22, 12. I had to do all I could to breath and try to not stress out and therefore breakout! My Brother was more like my own child than a sibling. I practically moved in with my mom to care for him Nov. – March 22nd, what a privilege, sharing that time and caring for him.

It is tough to deal with for an adult, mom’s I can’t imagine when the “wolf.” as it is often referred to on the board. attacks your child. On the bright site they learn more and more about AI which may help your youngster. Dermatomyositis is my current issue and I have had rash on my arms, chest, and left leg. I am, so photosensitive Wal-mart has become my enemy with all the bright flourescent lights. I have to wear a hat and sunglasses in there. I paint my entire body with sunscreen before going anywhere. I don’t even trust cloudy days as my mother used to tell us “you can get a burn on a cloudy day.” Don’t worry about learning everything at once. If you have an Autoimmune Disease all the treatments and labs and tests end up being pretty much the same. My only suggestion is to add a really good dermatologist to you specialists. See what the rheumy thinks of that. I started with derm and see a rheum end of the month. OK testing the ANA is test one when an autoimmune disease is expected. Many people don’t test positive for months or years after symptoms start. I had an ANA 1:11280 when my Primary Care doc had me tested with the first rash. I know my muscles are being affected by the dermatomyositis but I keep doing some arm exercises. Don’t hold your little guy back, if he doesn’t feel like doing something he won’t. I still haven’t had an EMG, rheumy may want one. I like what my daughter always asks.”How will this test or procedure affect the treatment plan?” She is a nurse better one than I was! What we have is rare and frustrating but we can get better with treatment. Keep us posted.I have been fighting this since May10 when i had my first rash. Probably had flares with fatigue before but I thought it was other stuff. Good Luck and keep us posted. I bet you find another mom of a young child soon.

There seems to be no recent posts are you guys getting more than i am? Haven’t heard from either of you since my last attempt. I see a consulting derm from Vanderbilt today. Doubt he will have any magic for me. Still haven’t seen a rheum but not thinking that is a big deal since the only joint that hurts is my rt. hip from tendonitis following partial hip replacement in 2008. Can’t take my fav NASIDS for it because I’m on methotrexate. Hope you guys are doing good.

Katie, you okay? Hoping you aren’t on as you feel better but kind of concerned that you are down. What I suggest is Vandy unless you have docs where you are that might recommend a derm and a rheu. in Louisville. I can give you names that are at Vandy that I will be using. Still fighting for the waiver from my HMO Medicare advantage plan. Oh I want to change but only advantage plans are affordable on the disability check!

Katie how about we try email as i have written you an answer 3 times and each time lost it in cyberspace by doing nothing that i KNOW of. I am not a computer guru. I have lots of responses but on email we can share more personal info which will get us together. i am from Ky. Owensboro, Louisville. and Westerrn KY… Charlottern08 @ gmail dot______.I’m posting before this thing goes into spontaneous combustion!

Katie, sorry you are having so much trouble. I too am fairly recent diagnosis and I started with an itchy rash on my chest from sun exposure for 20 min! That was in May and I am still getting referred around to find the right treatment. My labs show 3 different autoimmune diseases dermatomyositis, scleraderma, and lupus. I still haven’t had a rash on my face. I have a rash on my arms and my left leg. I don’t know what you have been told I assume you know “NO SUN” sunscreen is the rule. Do you feel extremely fatigued? Which disease showed up in your lab work screeening that made them diagnose you with AI? I started with my primary care and he referred me to a dermatologist, I also saw a rheumatologist and knew I wouldn’t see him again. Attitude is everything! His was indifferent! I asked for a referral to another and still haven’t seen him. My derm put me on methotrexate which is a form of chemo that suppresses the overactive immune system we are dealing with. She chose this because I can’t take anti malarials and at 61 and having already had hip and arm fractures prednisone was not a good idea. My rash is better on the metho but my skin is still real sensitive- long sleeves make me miserable. Have you had any steroids yet.? Do you have good insurance? Are you in a large city where there is medical school? I will be seeing a derm at Vanderbilt as my derm feels I need more help than she can offer. Now that’s a lot of questions but it will help us know details of where you are medically. I know one thing you need to see a different rheumatologist and definately need a dermatologisit. You will be in my prayers. What is your age?