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charbaby

mixed connective tissue disease

Posted by @charbaby in Bones, Joints & Muscles, Aug 26, 2011

I have been diagnosed in the last 6 mo. first the labs came back lupus, speckled. No typical butterfly rash on face. The rash was on my chest where I was briefly exposed to sun. I am olive skinned never even had a bad sunburn! They did steroids and that didn't help. Referred to a derm who did a biopsy of the area involved that came back dermatomyositis, scleraderma. Now the chest rash is gone and I have both arms covered in a raised rash, tissue is broken down on the right arm. Infection set in and I can't describe the miserable itch. Anyone out there that has anything like this nightmare! I am on methotrexate.

Tags: auto immune disease, hives, Skin Conditions

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swhitmire

Posted by @swhitmire, Sep 2, 2011

You have been diagnosed with an illness that most docters are hesitant to diagnose because nobody has exactly the same symptoms, and because most docters dont have the experience and want to treat you by what they read in their books and not by your symptoms. Rashes are very common with lupus. Stay out of the sun! Make sure you take your medicine like you should, You need to read as much as you can on lupus/scleraderma. Good luck on finding a good docter, because they are hard to find! If you find one you better hang on to him! I live in georgia and we have no good rheumatologists around here. Through my 15 years of research on this illness, most of us(people with scleraderma/lupus) have gone through the same problems. I wish someone had told me this stuff when i was first sick, it would helped me alot...and i hope it will help you!

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charbaby

Posted by @charbaby, Sep 2, 2011

Thanks for replying! I was a nurse for 30 yrs and yet feel dumb as dirt on this issue! I am currently on 20 mg of methotrexate once a wk. I won' t pass a window without sunscreen! Heat seems to be as bad as the sun. Nothing on the outside of my body looks like scleraderma but they haven't gotten to the catscans etc to see if there is evidence on my organs. My rash is more typical of dermatomyositis and is improving on the meth. I am still looking for the right docs, trying to get insurance to pay for out of network MD's that are at Vanderbilt. They are more open to the rare diagnosis. My derm is lovely and has diagnosed and done all the treatment to date as I did not like the rheum. in my network. It is reassuring to know there is one more person out there with mixed CTD. How are you after 15 yrs? Does the fatigue ever get better.? The rash is slowly responding to the med. but just taking a bath is unbelievably painful to my arms. Where rash is gone looks like acne scarring . Thanks again hope we can continue to communicate, this stuff really gets you down and feeling alone. You were my only response/

swhitmire

Posted by @swhitmire, Sep 2, 2011

Since i have been sick i have spoken with hundreds of people and have learned a lot from conversations with them. You need to know that different doctors will diagnose you wiith different auto immune illnesses. i call this the yes/no/yes/no diagnosis!! A lot of times they get grouchy when you ask and make comments.I had one doctor who never told me what he thought i had, and when i changed doctors i read on my records that he diagnosed me with crest/scleraderma. It made me mad.
Enough of my gripes about my docters not worth a darn.I'v had a few good ones....that wound up leaving to take other jobs and you know the rest,
I can tell you what i do and many other people like us do.Sometimes i get so tired that i cant even get up to do anything..Its not a normal lazy like most people that are tired have. At first when i did this i really thought i was going to die. It was that severe.It comes and goes. iv learned that if i am going some where , i have to rest first and kind of build up my strength. Another thing is any kind of stress or even something happy like going on vacation or planning an event, takes a tole on me.The Sun Is My Enemy is a book about lupus that is very helpful. I think i read it about 10 times. Its bad enough to have this illness, but its even worse with all the problems associated with the doctor problem!!!!! I get rashes every once in a while and my doctor ups my prednisone. Before i started taking my meds is when i got really sick. i take about 10 medicines...itx funny, that i dont have a problem with my dermatolgists either... hes a sweet heart and diagnosed me right off...Right now i am in the process of finding a new rheumatologist, and my internist is treating me.

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charbaby

Posted by @charbaby, Sep 2, 2011

I can't take prednisone very often, I have osteoporosis and have broken my hip at 57. I can't take placquenil as it has quinine in it and I am allergic to that. It seems methotrexate (chemo) is the drug of choice for me. It is really hard to explain the "tired" one feels with this stuff. I thought it was going to be a day to get some things done today but here I am propped up in bed, exhausted. I want a remission. My life is on hold! The celexa isn't helping the depression I experience as much as I would think. Next week it will be in the 70's which is great in TN but the sun will still shine and I
can't convince myself this will get better.

swhitmire

Posted by @swhitmire, Sep 2, 2011

Keep resting untill you feel rested up, no matter how long it takes! You will know when you can get out of bed!!! I take welbutrin for my depression. no complaints. also have rheumatoid arthritis and only take 5mg of prednisone..when i get worse doctor ups my doseto 20 or 30mg for a while, then go back to 5mg. Everybody is different. placquenil i took for a few years and decided it wasnt doing any good. Quit taking it. I take flexerill(2 at night) to sleep, hydrocodone for pain, cyclobenzaprine(2 at night) for muscle pain. protonix (2 a day) for acid reflux, Do you have knee problems?? I had both knees replaced. B-for i got sick i never had to take medicine. But the best thing i can say is that when my meds got all worked out,,,,my health got a heck of a lot better.

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charbaby

Posted by @charbaby, Sep 2, 2011

My med, history is congenital scoliosis, a split spinal cord ( had split in two down the middle and a tumor Benign was diagnosed in 2002 on the right side split. I had a great neurosurgeon who resected it as much as possible and I couldn't walk well after the surgery. I eventually got out of the wheelchair and on a walker then cane, then pretty much walking on my own. MRI showed it increased in size and I had a special kind of radiation therapy to kill the DNA in the tumor so it wouldn't grow. All this fell in the "never seen this before" category. I don't have RA at this point. I have numb left foot and can't urintate on my own so I cath 4 times a day. Now I get another thing Mixed connective tissure disorder, also rare. I want to get something normal!

charbaby

Posted by @charbaby, Sep 2, 2011

I will keep resting as there is little option,

swhitmire

Posted by @swhitmire, Sep 5, 2011

You sound like you have had your share of illnesses! I am sorry to hear this. I dont take mexotrexate. Why? Maybe because my meds are working ok right now.Over the years i have had to change and try a lot of meds. My fingers used to be real tight and have always been in pain. They are back to normal. my feet and knees are real tight.My body is starting to be very stiff. i cant bend or lean over or get anything from the floor. I was just diagnosed with rheumatoid about 6 months ago. Wierd huh? My whole body aches. My muscles and my bones This scleraderma can make you lifeless...I forgot to mention that when i take aniibiotics it makes me sick and weak, like i have the flue bad. Some times this puts me in the bed....I am having alot of trouble with candida of the mouth. I cant seem to get rid of it totally. It gets better and then starts back up. The doctor said its because of the sjogrins. It has attacked my moisture producing glands and my mouth nose and eyes are dry....I dont like taking prednisone because i read it makes your bones brittle, but my bones messed up before i ever took any predicsone. It also can cause lymphoma....Scarry...
I dont know any body else with scleraderma except you.. I know a few people with lupus though.....I am like you...Its nice to talk with someone who understands your illness.. I have 8 brothers and sisters....They think i have a lot of differnt things wrong with me. They cant comprehend its all one thing...scleraderma. They are like talking to a brick wall.None of them have illnesses.. I am a hard worker, i am not a lazy person, so it took a long time for me to realize i cant beat this stuff, that i work around it. I do things when i feel well and dont do anything when im tired..You have to give in to this illness and take care of yourself or it can make your life miserable or worse shorten your life.

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charbaby

Posted by @charbaby, Sep 5, 2011

You don't have just one thing when you have mixed AID, You have an army attaching from all sides! I was a nurse for 30 years and never knew a thing about this stuff! Sorry about your mouth, I guess you use majic mouthwash and Biotene spray? The biotene is a lubricant for the mucous membrane that helps hold a bit of moisture. I am on folic acid every day I don't take the methotrexate to prevent mouth sores but sojurns is different. I have fought physical battles all my life and will do what I can with this. I am a believer in Christ as the Great Physician and I'm sure giving him a shot at this. I don't know about your faith but Job, the Bible character, was allowed to be tested and had horrible sores all over his body! I joke with friends that I think I know Job had an autoimmune disease or 2! Sometimes you just have to see the humor. I have lots of support in my world, you are the only one who is walking the same kind of walk but 2 of my kids are nurses and my sis is a nurse so they do recognize this for what it is-pretty awful. Hope you have a glimmer of comfort today. Charlotte

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bobthebuilder54

Posted by @bobthebuilder54, Oct 12, 2011

Hi, I am new to this forum and have enjoyed reading all of your posts. My story is this, Hives for about six months on back side of my body, then rashes on my upper chest, eye lids, hands looked like poop, could not button or pull up my pants dx with photosenstivty, by a dermatologist, then got Raynauds then went to a rhuemy who dx me with Scleroderma, then four months said UCTD (mixed), reflulx,then sent me to a neurologist who now says I have neuromuscular involvment, ( Progressive muscle disease and neuropathy). I have autioammune hypothryoid. Autioammune microscopic colitis, hypertension, just to hit the high lights. LOL. you have to laugh right? Well I am on my way to a specialist and Northwestern in Chicago. for neurology. My neurologist wants a second opioion. She org, wanted me to go to Mayo but my ins wont pay.I have very bad balance problems, I walk like I am drunk. My legs are so weak, I can only do a little and then have to sit, for an A personality this is the hardest. If I do get a good day and do alot I pay for days later. I also get mouth sores, but have not been dx with schroegen (spelled wronG) sorry, but I am sure I have that tool I have had dry eyes for ever, the mouth, vagina area for a while. There was a time I lost all my hair off my legs, under my arms, on my arms, on vagaina area, this was weird, but now comming back. I feel that one of the hardest things about these dx is when they keep changing them on you. I was tested three years ago ANA postive speckled pattern and has tested postive since. I am so tired all the time and feels like I am dragging a hundred pound weight on both legs. Hard to explain to people. My neurolgist told me in June to quit my job, that was a shock, I had been pushing myself for so long, it became normal but she was worried that I needed to rest and take care of myself. So have been home since July of this year and this is weird too.
Do any of you have problems with colits? I have been in a flare for two months. I do not want to start on steriods but I may have too to get it untder control.
Well thanks everyone for listening to me, and I amso glad I found you all.
Susie

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ahrrsnh3

Posted by @ahrrsnh3, Oct 29, 2011

Wow... thank you to all for sharing this information. I am just starting down the road on dermatomyocitis. My 4 yr old has been recently diagnosed. We are currently seeing a rheumotologist and getting ready to start treatment. They are suggesting a EMG to be done next week to see how muscles are reacting. I am terrified, there seems not to be a whole lot out there this disease and we are getting so much thrown at us at once. It seems they really dont know a whole lot about the disease. I see that some of you test positive on the ANA test, my little guy did to... What does this mean? Thanks and good luck to each of you. I will be praying for all of you on this post.

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charbaby

Posted by @charbaby, Oct 29, 2011

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.

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charbaby

Posted by @charbaby, May 22, 2012

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

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tigerlilly

Posted by @tigerlilly, Aug 1, 2012

I have sjogren's syndrome, raynauds syndrome, photosensitive, depression and anxiety. sjt2925@gmail.com

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charbaby

Posted by @charbaby, Aug 2, 2012

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!

tigerlilly

Posted by @tigerlilly, Aug 3, 2012

I also have problems with indigestion, reflux, aches, pain, brain fog and fatigue. Thanks for your reply.

charbaby

Posted by @charbaby, Sep 5, 2011

Have you ever taken methotrexate (chemo drug)? I am on 25 mg. and they raise it every week after reveiwing my labs. My skin on arms looks better this week but I have been in bed since the last dose last Tues. It is now Monday and tomorrow is the day I dose again. I think it is the chemo making me feel so bedbound at this point as today is much better. My knees are okay, really affects my muscles more than joints, my skin on my arms feels tight and muscles are weak. You can email me at charlottern08 AT gmail dot com. Thanks Charlotte.

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katie

Posted by @katie, Sep 9, 2011

This is my first posting and I am not sure that I am doing it correctly. I have recently been diagnosised with an autoimmune disease based on labwork and generalized hives. The hives are miserable and I am on multiple antihistimines. I have not read about any autoimmune diesae that is associated with chronic.hives. They cover me daily from head to toe and my quality of life is suffering. It has lasted 10 weeks now and I am desperate. The referring Rheumatologist (from Immunologist) denied me because I was "inappropriate". What does that mean? I cannot find anyone that cares about me. I went to this site for support and maybe some answers. I am sure that you all are th real expets. Thanks.

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charbaby

Posted by @charbaby, Sep 10, 2011

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?

katie

Posted by @katie, Sep 12, 2011

Charbaby,
First of all, thanks for being my friend and for praying for me. I will pray for you also. Prayer is what has gotten me through this experience thus far. To answer your questions: I am 51 years old. My diagnosis was based upon lab work for (ANA, Compliment tests). I have insurance through the hospital where I work (we are self-insured and I have a 2,000 deductible).I am 2 hours away from both the University of Louisville and Vanderbilt University. I had a biopsy of a hive and the surgeon did not order the right tests on my biopsy, so my initial biospy was inconclusive. I have no Rheumatologist or Dermatologist.The Theumatologist denied my case. I am still struggling to find someone who can help me or even cares to help me. My primary physician is young and new to practice. I have an appointment with him next week to dicsuss where to go from here. I am just struggling as to what direction to take. I am a Registered Nurse with a Doctor of Nursing Practice degree. I believe that my healthcare providers think that I am supposed to know what to do. I do not have a clue about this,as my degree focuses on advanced nursing care, research and education.

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charbaby

Posted by @charbaby, Sep 13, 2011

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!

charbaby

Posted by @charbaby, Sep 17, 2011

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!

hayleesmom2005

Posted by @hayleesmom2005, Dec 4, 2012

Any side effects of the methotrexate yet?

livingngrace

Posted by @livingngrace, May 21, 2012

I've struggled with this for 14 years... So many tests, so many wrong answers from doctors... Finally a clear diagnosis two years ago. (I always knew it was lupus, but rhummy wouldn't diagnose because no rash on face-crazy!) and I couldn't even begin to list the different meds I've taken.... But I do know the damage most of them have done to my body! For every pill the rhummy put me on, family dr had to give me two more to counter the side effects! I am now following an all natural plan which includes strict diet changes and zero impact workouts (in water) and herbs I grow at home that provide pain relief (legal ones...hahaha). I'm still struggling some days. I still have pain and stiffness each morning. But, I'm not sick from the meds, I've lost 50lbs and My head is clear! I'm also not as fatigued without all the drugs! Research natural alternatives... Then insist that your doctor help you through it. This is not a "vitamin-health drink" diet... Just eliminating those foods that hurt us and adding better foods to help! Goodluck!

charbaby

Posted by @charbaby, May 22, 2012

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.

livingngrace

Posted by @livingngrace, May 22, 2012

I eliminated all enriched flours from my diet (follow the Dr Oz recommended first five ingredient list) I eat only 100% whole grains now. It is rough to find the things I love to meet the requirements and I have taken to baking many things from scratch. For me... Sugars and those "white" or "enriched" foods caused inflamation! I am still struggling with my rash... Mainly because it's spring and im a gardener! Love being outside! But, I do most of the shade gardens while my husband handles the veggies in the sun. I have found that ginger works for my pain. I add ginger root to my smoothies in the morning, my tea in the afternoon, and generally use it in cooking as much as possible. The most recent transformation I have made is to reduce the amount of animal protein I consume. I am getting most of my protein from soy, nuts, veggies, and fish. My body seems to be able to break it down and use it faster and better so I have more energy (or so my research tells me). Whatever the reason, I feel stronger! In general, I stay away from processed foods and opt for fresh and raw whenever I can... I make my own dressings, baked goods, and grow my own herbs... My main symptom is inflamation of my joints. I researched foods that cause inflamation and cut them... Then found that many food reduce inflamation, such as cherries and omega-3 rich foods. Broccoli is my favorite friend. Oh! And. Cow's milk was another thing that I replaced. I drink soy, almond, or coconut milk now... The cow's milk is an animal protein.... As for the rash... Water, water, and much more water... And reduce sun exposure and stress! The more I excersise (yoga and water classes) and eat right, the better my rash is (if I stay out of the sun)... Goodluck and let me know what you find that works!

whathappenedtome

Posted by @whathappenedtome, Aug 2, 2012

I am new to this site. I started having problems about 3+ years ago. It started with a bald spot on my head. The derm biopsied it and it came back discoid lupus. She sent me to a rheum who ran some tests. At that time they were on "paper" records and the rheum couldn't find the test result in my file. He didn't think the diagnosis was right. I went to my primary. He told me I didn't have it either. All the while my derm telling me they were wrong. My only experience with doctors up to this point was my female preventative care, very rare visits to urgent care when really sick and ob/gyn when pregnant (all pretty standard). Now I had 3 doctors disagreeing and confusing me and I began to see what happens when things fall outside the "easy diagnosis". Finally I got in touch with the CEO of my medical center (only because they have started a new thing in California where surveys are done on their specialist doctors and reported to a nuetral website where people can see the quality of the doctor). I got a letter from the clinic saying I was going to get one of these surveys. The letter was form signed by the CEO and at the bottom said "we care about you". I wrote in big black marker that I didn't think (I'll leave the name of the clinic out) cared about me!!! and mailed it back to her. She called me and got involved and had another reading of the test done at UCLA. The pathologist called my primary who told me it was discoid lupus. My primary told me it was (feeling no embarassment, remorse, sense of apology etc.) My rheum still didn't believe it and called my primary to confirm and my primary told him he remembered talking to the pathologist but couldn't remember what was said. OMG I am really starting to see how flaky the medical profession can be by this point. I couldn't believe it. Since then I've had many things turn up in tests but currently am diagnosed with mixed connective tissue disease. I have a dilated aortic root (heart), thyroid disorder and nodules, pericarditis (heart), ground glass attenuation (lungs), anemia all resulting from the AI. Most of these things I wouldn't know I had unless I went and got all my medical records. When my rheum first ordered tests and said he'd see me back in 3 months, I tested positive for RA. No one ever called me. The rheum couldn't find my test results. HIs nurse said things always get burried in his office (I can't believe what I'm hearing). He seemed surprised to find out that something was actually wrong. When this started, I decided I wanted to read for myself all of my medical findings. So I go to the clinic and pay for my records every few months. My rheum wasn't going to tell me about the anemia, but I already knew about it since I get my records. So I told him that I had it at my appt and he said he knew. Then he ordred tests. He was just going to blow it off. Several tests came back with problems and he put in his notes for me to go on iron and for someone to call me and tell me. No one called me. I had to call them and ask them what to do. His snotty nurse seemed peeved that I knew more about my case than she did. When I asked her what to do, she barked get an iron pill. I asked her what mg and she barked there are no mg amounts in iron its all the same. I get to the store and find out there are different mg amounts. I complaiined to her supervisor. I've complained on several occasions, but save my complaining for more serious things. This is just the tip of the iceberg on the pathetic care I would receive if I weren't proactive and staying on top of my own case. I research everything I read in the test results and doctors notes. I've noticed that my rheum is upping his standard of care since he knows I get all my records and am one step ahead of him. I still feel horrible a lot of the time and the lonliness is often overwhelming because no one can understand this unless they are going through it. Part of what is so hard is knowing I've only been dealing with this for 3+ years and I have my whole life that I'll have to be dealing with this. I'm 51. Its very overwhelming at times. I guess my whole point in this post is after reading that you all have experienced these low standards doctors to suggest that you get your records if you aren't already doing so. This way you'll be a step ahead at all times. Every time a new finding pops up I research it on reputable sites. My specialists know I will go in and expect them to be honest with me and that even though I'm not a doctor, I'm more educated on my findings than they are probably used to dealing with. I have a saying that I have to "scratch and claw" to get the bare minimal acceptable standard of care. I don't know if this will help any of you, but I hope so. If you have any advice for me, I'd love to hear it. Take care.

madelinehowell

Posted by @madelinehowell, Aug 4, 2012

I always get a copy of anything or test done because they don't even call you anymore to tell you some thing is wrong. I recently had three vials of blood drawn for a lot of tests--liver, kidneys, electrolyte panel, CBC,--- 3 or 4 tubes of blood were drawn from me, and was never called about the results. 3 weeks later I went to get them and guess what--I was only given a CBC result and told that nothing else was drawn. Isn't that interesting...I am planning to contact the insurance company and see what tests they billed for. Scratch and claw for the bare minimal of care is a great description!

hayleesmom2005

Posted by @hayleesmom2005, Dec 4, 2012

Any reaction to the methotrexate yet?

merleyfred

Posted by @merleyfred, Dec 10, 2012

I'm new to this site. Wish I knew about it when first diagnosed 5 yrs ago. I was diagnosed with dermatomyocitis but it took 6 months to get correct diagnosis. After the first rheum doc said he didn' t know what was wrong, gave up on him and sought another. Found out first rheum was
More interested in taking photos for publication. Should have known. 2nd doc diagnosed me immediately when he first saw me. He switched me from celcept to methotrexate started plaquinil and mega steroids. Steroids made skin worse with open sores but eventually resolved but not the rash. Eventually started C-quinicrine and switched from pill form to injectionable methotrexate. After several years of this combo rash finally resolved but left scarring most visible on my face. Now on cyclosporine with occasional steroids for flare ups. I also have reynauds syndrome, joint and muscle pains. There are days when getting out of bed is a chore but must keep moving or gets worse. Along with the autoimmune diseases comes some type of lung disease. I have interstitial lung disease/pulmonary fibrosis. Was hospitalized several times with lung infections. But living with shortness of breath everyday can be unbearable. Was enrolled in pulmonary rehab and it helped a lot. I know what you're going thru. I totally understand. As far as the itching you might ask you' re md for triamcinalone cream, s steroid cream that's stronger than over- the-counter. Won't work immediately, took me about a month for rash to feel better. I truely hopes this helps you.

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