Now i am having problems walking ......something else that i hear is rare because of all the medication.....thats all i hear know days is the word rare....what about you... need someone to talk to.....that understand....i just dont understand how i get this.......I have people in my family that abuse there body an they are fine...im sorry it is epidural lipomatosis from L5 through the sacral region

I have not heard of that. Yet another strange occurance with this dreadful disease. I have stopped trying to figure out how this could happen to me and think of those that are far worse off than I am. Thats how I deal with it. You can post on here any time. I will talk to you if I get the notification. I am sending positive thoughts your way.

Thank you......I am so mad....I try my best to be positive around my husband.......I have been out off work for two years because of a workers comp slip an fall an then alll of this happen....I start to cry a lot for some reason I thought I would wake up an everything was going to be better...

You definitely need to try to be positive around loved ones. They are hurting to see you this way. You must have a good medical team. I do not know where you live but a good doctor is tops. I have read all about this disease and go over things with my doctor. We have tried several medications until we found a combination that has worked very well for me. It is trial and error so please talk with your doctor. For example, I take Cellcept, which is actually a med for transplant patients but it also works on some patients with auto immune diseases. That and Rituxan infusion every 6 months has given me a more positive outlook. Please talk to your doctor about options. You have to take charge of this and fight to feel better.I will be thinking of you:)

Thank you......... I am going to bring up those medication with him that cellcept is a name that keep comming up.

I am sorry you're having such a hard time. It is overwhelming and a roller coaster. Sometimes it seems just when I've got everything managed another side effect or problem pops up. I allow myself to have bad days - and days where I'm just flat out mad about the whole thing. After a few days I can let it go and just stay focused on the immediate and the important things - like my kids. I may not be able to do all the things I used to but I'm still here. In addition to a good group of medical docs, I also have a therapist on my 'team.' It's been really helpful to have a private place to share my deepest fears and worries. I hope you can find a space/person to do that with -- outside your immediate loved ones - so that you can have that outlet. I was switched from prednisone/azathioprine to a prednisone/cellcept this summer and it's been a big improvement. Trying to taper down the prednisone (currently on 30/day hoping to get to 10) and that is reducing the side effects. Just dealing with the steroid damage (brittle tendons, shingles, body aches) and hoping that eases up over the next 6 months. Little by little, things improve. Keeping you in my thoughts. Kelly

Do yall have the nsip along with antisynthetase...I think what bother me more since i lost my job...... is that when i go for a job interview i try to get there almost an hour early to calm my breathing down before i go inside.With this extra weight an the breathing i know it does not look or sound good.On top of the restrictions from my worker comp injury.....This just been a hard couple of weeks for me....I really thank yall for letting me cry on your computer lol..... sometimes i just dont want to put on my happy face...but i do know that it is a lot of people that is not doing as well as me....... Thank You onetouch

I am currently functioning at 54% lung efficiency and have to carry supplemental oxygen with me for most everything. I can and do take it off when I'm just sitting. That sure does add a whole nother dimension to job situations! Give yourself time. It's a lot - all at once - and it sucks. It takes a long time to find a new normal. No need to put on a happy face until you're really ready. We've all been there. Kelly

Thank You I will say that i feel bad or ashame...... that i dont walk with my the oxgen like i suppose to . The same as you when walking i need it but i can take it off with sitting.I say im just going into the bank etc. Even the days i feel good some one will say are you ok....I say i feel good and they will say you sound bad.....Just a reminder when i did not want one.. I have the oxgen in the car but ....I think i do feel ashame i did not realize i felt that way until now.. Thank you onetouch sorry for any misspelled words

The oxygen sure adds layers to social situations. Some times I find I smile more at people to try to get them to be at ease, some times I like that people back off (especially during cold and flu season) as it gives me a buffer zone. Some days, when I'm moving slow, I like that it kind of explains things to folks without me having to say anything. Then there are times I'll putter out to get the mail and a neighbor will see me without it and get excited and say something towards that I must be all better... they have no idea my O2 saturation is at about 80% at that moment and I really should have the damn thing on! It is hard not to feel self conscious with all that tubing on your face and lugging a tank. It's a lot to adjust too. k.

thank you for making me smile i needed that! Today in va was the last day to pay personal p taxes. I dont know what was more funny me helping the elderly or the elderly trying to help me.When we seen that line both of us said forget it and left. Then i go into the bank thinking i am having a good day and the teller ask me was i ok she said i sound bad.....I felt good until she said that.! The last couple of nights been hard i cant fall asleep.They gave me gabapentin it was helping but not this week for some reason. Do you have to take any fluid pills? Do your hands burn? Do you get headaches really bad? Is your coughing under control ? I hope someone can give me information on this epidural lipomatosis. thanks for talking

HI ONE TOUCH, IF YOU DONT MIND WHERE AT IN VA? I AM IN VA TOO,SMITH MNT. LAKE. I AM ABOUT 3 HRS. FROM DUKE UNV. IN FACT I GO DOWN TOMORROW. THEY ARE GOING TO TAKE 2 MORE NODUALS OUT TUES. SORRY MY LUNGS. I DIDNT WEAR MY OX. EITHER, TOLD MYSELF I DIDNT NEED IT. I WORKED MY HEART SO HARD I HAD A MASSIVE HEART ATTACH THIS SEPT. I USE TO SMILE AT PEOPLE ALL THE TIME, AT LEAST UNTILL MY TEETH BROKE OFF AT THE GUM. FROM HIGH DOSAGES OF STEROIDS AND A LONG PEROID OF TIME. BEING ON THEM. LEFT HIP REPLACEMENT, MY BONES ARE FALLING A PART.I TOLD MY HUSBAND TO LIGHT ME UP AND PUT ME ON THE PORCH, FOR HALLOOW, DIDNT SPELL THAT ONE. HONEY U HAVE TO LAUGH AT YOURSELF. I KNOW ITS HARD BUT IT IS WHAT IT IS. ITS JUST FEW PEOPLE KNOW WHAT IT IS. ITS LIKE A ROLLER COASTER, ICANT EVEN SAY IT RIGHT IF AT ALL.LOL KEEP COMING BACK HERE ITS A SOFT PLACE TO LAND,........OK WHO STOLE MY EYE OFF MY KEY BOARD........ I WILL FIND IT.....SEE I DID LOL GOOD LUCK HON. TAKE CARE

Hello hope you had a nice thanksgiving everybody. I'm in Chester VA. 20min from Richmond VA an mcv.vcu.....The doctor told me at my last appointment he wanted me to go john Hopkins i was a shock....he want a second opinion on what he is doing. I said lets try mcv before i go almost 3hours away.The cough is terrible.I suppose to start a job on Tuesday my first in two years.I would get sick know.I'm sorry i guess i just wanted to get all of this off my chest.You said you are going in on Tuesday i will be thinking about you and praying for you.This is not to soon after your heart attack?. How long have you been with your doctors? Do all of them no each other? You take care please keep in contact!!!!!!! one touch

Hi onetouch, I think you should definitely try to go to the Johns Hopkins Myositis Clinic if you can. They have some of the leading experts in the world on this disease. You, and anyone else should also try to get in contact with Dr Frederick Miller at the NIH in Bethesda, Maryland. He is doing a research study on this disease, trying to find out what factors might cause this disease. I think they are still looking for volunteers. He is extremely knowledgeable on the Antisynthetase Syndrome. He first discovered this disease over 20 years ago. Take care. -sickdude

nanasix, are nodules in the lungs common with antisynthetase? I have one but nobody ever explained it to me. I didn't even know if it was from the disease. Sorry you are having such a hard time breathing onetouch. Have you seen a pulmonologist? Hope everyone had a great Thanksgiving weekend.

Hi barbie i hope you had a good week! More xrays today for me. Our last name should be more or rare...more of this or that an that is rare that's all i hear. lol some good news i started a job today first time in two years since i fell on ice.I don't no how long it will last but it is nice just to try. I wish they had some kind a group meeting in my area like lupus or ms. Somewhere to go an meet other people like me...Yes i have been seeing a pulmonologist he want me to get a second opinion at john Hopkins.Sickdude said that sound like a good idea. I am going to give them a call in January.The people that took the xrays look at each other made me feel scared again. I will no more tomorrow. nanasix im thinking about you !!!!! I hope everything went ok on Tuesday! one touch

So exciting that you get to go back to work. It will be 2 years since i had to quit in March. I hope it all goes well. I'm going threw all my tests right now too before the year is over and deductable is reset in Jan. They won't share much till I get them all completed though and I see her on the 13 to go over all of them at once. I hope in the next year or two I can go back to work again too. good luck with all of your tests, I hope they come back better then any previous ones.

Hi onetouch, I have read your posts and I (along with everyone else on here) can sympathize and have been where you are. I think going to Johns Hopkins is a great idea, I spent 3 months in the ICU there,16 days in a coma. It is a great place! I was released from the hospital 1 year ago last week with 35% lung capacity and in a wheelchair. They told me I would never be off oxygen and would have to work very hard to walk again. I am now at 52%, off oxygen and walking with a cane. I go through days like those u explained. I am a 30 yr old single mother of a 9 yr old very active son, who is very intuned with what is going on. I had to move back in with my parents after 12 years bc I physically and emotionally and financially couldn't take care of both of us. I am never allowed to work again and have to (supposd to) wear a mask in every public place. I've had a ROUGH year, but this forum is great and if you need someone to talk to, I'm here too!

nice to hear from you natalie2581 *I hope this up coming year will be a better one for all of us*. I had to take the job that was offered because that is how workers comp is.Believe me when i say i am taken every pain killer in my night stand.Don't get me wrong i am happy that i am working an i am giving it my all. On the other hand it is not good for my lungs that i got to take so many pain killers to make it happen.I am pushing my self so hard because we need the money......all jokes aside that's how it is.I have always work it is hard not having your own even when your family members say its OK....Its not just about them its how we feel on the inside when we are independent...I no for me not having my own makes me a little more quiet an don't comment as much. If i ever had a lesson to learn was the one of being quiet. That one was always hard....lol I have so much patience i surprise my own self.....but i do cry alot more.My son says i show i lot more emotions now...(don't know how to take that comment) What can we do? this is what we are dealing with i don't no why or how this came about but it is rare...lol i rather wish one the lottery lol but i am glad to have y'all to talk to...I hope y'all can understand everything im trying to say sometimes i get a little blurry. glad to get some stuff of my chest...I wonder would it have made a difference if they would caught this earler instead of saying i had lupus....Im 42 for the last 6 years thinking something else... onetouch

Hi everyone, my 60 year old hubby was diagnosed with this syndrome 2 years ago too. He was very healthy and never took any pills and now he is taking 3 rx (prednisone, bactrim and mycophenolate mofetil) plus vit. d3 2000iu and oscal calcium with vit. d. The year before he was diagnosed he had emergency heart surgery and now has a artificial valve. Never had any symptoms until one fateful day and then boom. He has suffered with split skin on his fingers but when it gets so bad they increase his prednisone and it goes away. He also uses a hand cream we buy at Lowes called O'Keeffes working man hands. Comes in a small green circular container. He also has some lung problems but it seems only to effect him when climbing stairs. Make sure if you are taking any of these medications they monitor your liver, kidneys and get bone density tests done. I understand when you guys get so depressed having to deal with something that nobody can even tell you how you got it. Maybe some anti-depressants could help. Just a random thought here but do any of you with thhis syndrome dring a lot of grape juice?

I'm on a couple different anti-depressant drugs and anti-anxiety drugs! They don't always help. What's with the grape juice??

No grape juice involvment here. My first symptom was the mechanic's hands. I also use O'Keefe's Working hands and it has made all the difference for them. My question is how many people with this were taking Lipitor before it all started? I was taking it for several years before my hands got bad, but then my doctor doubled my dosage to 40mg, and within a month I was having issues with my muscle control, aches and pains, and the lungs were a minor issue at that time, but helped them diagnose me and tie it all together. When you hear the disclaimers on the commercials for lipitor the say that if you experience any unexplained muscle pain or weakness to call your doctor because it is a sign of a "rare but serious" side effect. I've been trying to find out exactly what that "rare but serious" side effect is called. Nobody wants to answer me. So, who was taking Lipitor before all this started?

No Lipitor here or grape juice. I think i've had mine for many years but thought a lot of the symptoms were normal, what do you know when it's all you know. Mine suddenly got really bad after a bad break in my foot. I think thats when that put me down, my body just gave in to the disease. My first signs were severe pain in my shoulders and hips and muscle weekness. Actually my first signs were digestive problems, heart problems and skin problems but they were small comparted to the pain and muscle weekness. How many people got sick right after a physical trauma or a lot of stress? I think stress and trauma triggered mine. I had two family members die around the same time. I got shifted around multiple doctors due to them thinking it was a type of md and others saying another thing but even worse was every time I'd make an apt. it would be at least 5 months out. They see me really fast now thank goodness.

Hello family I would have to agree after my slip an fall 12/25/09 everything went down hill.....For years they said i had lupus....Now this.. I never smoke nor drank..That question was the main one they ask do you smoke? do you smoke?....got on my nerves. I wanted to give an report on my first week working....After i stop crying...Sorry my report not good. I just cannot do it..My legs will not move and this added rare thing from my back made me not able to hold my water, if you know what i mean..I did make it to the car before that happen....I just sat that there with wet pants. After i cried for thirty minutes and my husband said come home i finally got myself together. To all of you that have small children my hat goes of to you! It have to be hard. Much love to you all.To y'all that are working i wanted to be one of you what a powerful mind set love to y'all to. As for me i just don't know yet.That ride to Baltimore does not seem long anymore (john Hopkins) I have never had such a hard time before.It use to come and go now it come and stay.I was the girl that could run and jump rope in 4inch heels go to the hair salon and work all day.Until one day i fell on some ice..........I don't even want ice in my glass anymore...I made my own self laugh..Now im going crazy at least that's not rare. onetouch

Hi All. No lipitor or grape juice here. I was taking Nexium for about 15 yrs, and just got off them before all this started. gotta wonder if the doctors giving us these meds isn't part of the problem. I know nexium is supposed to be used for 8 weeks max, but just could not get by without them for all that time. Finally went to naturopath who changed my diet and lifestyle, and did not need them anymore..... Onetouch, you mentioned the part about holding your water. I wonder if anyone else has this problem. It seems like within a second or 2 of my body telling me "it's time to go pee", that I have a very hard time holding it long enough to get to the bathroom. I know just how you feel. I too am getting very frustrated with "wetting" myself. At 45, I figure I am too old for diapers, but too young for depends, if ya know what I mean. I just hope it gets better as my muscles get better........please...... I am not back to work yet. My doctor says we will look at that in April 2012. I pray that I can. One thing you have all taught me is that this is a long process, and we need to be patient, and look after ourselves. I feel so lucky to have a "family" on here to talk to, and get info from. My wife is incredible, and is by my side every step of the way, but without having it yourself, just can't quite fully grasp what we are going through each day. Keep up the good fight, and God bless us all. Wayne

I only mentioned grape juice because I saw an article about it having arsenic in it and my hubby drinks it 3 times a week. Grasping at straws for any answers. He never drank or smoked either and we can't recall any stressfull time that might have caused it. I suppose the mechanical heart valve he had to have might have triggered it but he is so layed back and takes things in stride.

I don't drink and smoke either at least not very much at all ever in my life. I worked out at the gym too and took my vitamins so I'm really perplexed about the whole thing.

No grape juice, no use of medications, no smoking, etc. Always been super healthy. But I will say the 3 years prior to my diagnosis were the most stressful in my life. During those years a close friend died from a brain tumor, I had a rough pregnancy with my second child (threw up every day until she was born) and when the baby was 4 months old, my partner was diagnosed with cancer (and then we went through 11 months of surgery, chemo, radiation while parenting two young children.) I did a great job taking care of everyone else but myself. So if I ever was at a weak point, the late spring of 2009 would have been it. And that's when I caught the same cold my 3 yr old had. She got better, I continued to feel tired and short of breath. I also noticed my hands seemed weak when I was carrying things. Within 3 weeks I was so short of breath, coughing and exhausted that I wanted to lay down in the bark chips at the playground but wasn't sure I would get up. Luckily I'd had the same doc for the past decade and I told her what was going on and that it felt like something was taking over my body. She believed me and immediately started running tests. Autoimmune stuff popped up but nothing in the right combo. She referred me to an internist, who referred me to a specialist but before I could even get an appointment I ended up in the emergency room unable to keep my O2 sats above 80. This was 7 weeks after I got that virus/in the late spring/had been in the sun/was really run down. (there's got to be an environmental/viral/health connection) I was hospitalized for 9 days and my lungs were 70% filled with immune system cells by the time we got the test result that said "Antisynthetase Syndrome - OJ subtype." It's been a long road back since then. I do think the medications (especially the prednisone) cause issues from bladder problems (had to resort to wearing bladder pads so I wouldn't have to worry while out, plus I know where every bathroom is located) to dark moods (I always have to fight this when tapering off the prednisone). I seem to spend as much time managing side effects as the actual disease. I am in awe of anyone who is able to work while this disease is active. It takes all my energy to take care of myself, the kids and a few basics. I think it's amazing the things we have all been through and we're still here. I hear your stories and it makes me feel less alone. Thank you for sharing.

No grape juice or smoking here either but I had been taking the herbal remedy Echinacea frequently before i was diagnosed, it boosts the immune system, and i wonder if it sent my system into overdrive. I was extremely stressed, working too much and a bit run down, and a nurse recommended it. I tell my kids not to touch the stuff just in case they have the same genetic disposition to auto immune disease. I pray that they don't.

Alison, The very first thing my doctor told me after my diagnosis was that the only two things they know for sure is that it is not contageous and it is not hereditary. So you don't need to worry about genetics and your kids. I was even told that I could still be an organ donor.

I remember expressing to a doctor my shock at having developed AS because I'd always been super healthy, rarely got sick, and when I did, got better rapidly. She said that some wonder if your immune system doesn't triggered enough by viruses, etc., and thus doesn't get to practice appropriate responses, that it can then lead to a huge, over the top response such as an autoimmune disorder. Has anyone ever heard of this line of theory?

Kelly, The only other person I've heard say anything like that is my husband. He's always talking about how people have to scrub everything with bleach anymore. His theory is that if you don't let your kids get dirty every now and then, how are their immune systems supposed to fight off anything. They need the work-out from the everyday stuff. It is an interesting theory.

Growing up though I played in the mud and got outside a lot. I did grow up around a lot of chemicals, my parents had their own business of restoring cooling engines and we were around the shop with the chemicals all the time. I relate it to my environment. I don't think our bodies know what to do with all the chemicals and poisons. I lived a fairly healthy lifestyle too. Growing up we had a huge garden everysummer and as a kid I loved veggies. I personaly think its environment and then stress was my trigger. How many people think they have had their symptoms for a decade or more before getting really sick. I had on and off since my teenage years bouts of extreme weekness and severe shoulder/back pain. I always thought it was normal till I found out those were the first sympoms of my disease. It would come and go over the years. Usually go when I would crack down on my diet and eat really healthy and exercise more.

I would have to disagree with you tbear, having a positive family history of auto immune conditions can give you a genetic predisposition which increases your risk of developing an auto immune condition, i have a lot of type 1 diabetes in my immediate family, i also have coeliac disease, and it's my opinion that my dodgy genes as well as external factors such as stress and chemicals kicked anti synthetase off for me.

Well, in my family medical history, there is no predisposition for anything. There is only one case of Type-2 Diabetes and nothing else. Most of the family lives to a ripe old age with only complaints from both sides for the female with oseoarthritis. And my rheumetologist told me that unlike Lupis, stress does not have an affect on anti-synthetase syndrome. I asked about that specifically because I have "the boss from hell", and he was causing me quite a bit of stress at the time of my diagnosis. One the other hand, they know so little about this syndrome, how can we tell if stress is or is not a factor?

tbear, My doctors told me that my AS came out because of stress! They said I probably always had it looking at my medical history, but all the stress I was under was caused it to come out in full force.Everytime I see my rheum dr she tells me to say calm and away from stressful situations. I guess it effects everyone differently, because mine is so bad I'm not allowed to work! I am the only one in my family that has a autoimmune disease!! In fact I am the only one with any kind of chronic disease!

Hi All. I have also heard that stress could bring it out, I was also told that it could be any number of other things as well. It could have been a simple virus from 5 years ago, The whole problem is that they really do not know what triggers the autoimmune reaction causing this, or any other autoimmune disease. It is speculation at this point. we also believe that I have had this for a couple of years, but it was in a very mild state. I thought I had the minor muscle weakness due to getting older, or being on my computer too much. Always had a reason to not worry, as it was mild. I also have asthma, so minor lung issues were also "easily explained". Once the muscles and lung issues got bad, then they could no longer be explained as age or lack of exercise, etc. and that's when they diagnosed me with this. We will probably never know what the final "trigger" was. I am very lucky that my doctor's caught it early, and I do seem to have a course of treatment that is working....well..... I am on high doses of prednisone (finally tapered to 70 mg/day, and will taper down to 20 eventually) and imuran 200 mg/day. I was lucky and started IVIG a month after diagnosis, and am doing it over 3 days, every 3 weeks. I am able to walk without a cane now (been 3 1/2 months since diagnosed), and my lungs have gone from 10% capacity at diagnosis to almost 70% now. I was also unable to walk or get out of bed at time of diagnosis. My wife was notified when I was admitted to hospital that I was expected to die.it took 6 days of 1000mg prednisone to keep that from happening, and start me on my way to where I am now. I just pray I keep feeling better, or at least don't get worse again. I pray every day that the rest of you on here find something that works. I am still off work, and expect to be for another 4 months. We want to make sure of things before I even think about going back to work. It is still early, and anything could still happen. I will keep praying for us all. Hopefully we can learn more every day. God bless us all. Wayne

Wayne, I am/was asthmatic as well and lung issues were easily accounted for, my inhalers stopped working so they started new ones. When I was 16 my lungs collapsed for no reason and at the time the drs in my hometown chalked it up to "we don't know why this happened but you're ok now." Then when I was 18 I got an infection in the cartilage that surrounds your lungs, and again this tipped no one off in this small town of mine. They gave me antibiotics and sent me on my way. Flash ahead to a yea and a half ago, now 29, I started having all kinds of problems, the rash on my face, purple fingers and toes, breathing problems, major muscle pain. I was living in Hagerstown with better drs and they couldn't figure me out. My lungs started getting worse so they transfered me to Johns Hopkins and I was diagnosed there, then my lungs collapsed again and all hell broke loose, I was in ICU for 3 months bc my lungs wouldnt re-inflate. I was life flighted up to Pittsburgh for a lung transplant, but the specialists there "fixed me up" for now. I'm hanging out btw 48 - 50% capacity and they don't expect it to go much further bc of all the trauma. So I spend 5 days a week at therapy but I walk with a cane and I'm alive so its all good! I pray they figure out this ASS disease in my lifetime so at least we get some answers! Natalie

Wow Natalie, that is an amazing story. I'm so glad they fixed you up enough for now! I'm curious about being put on the transplant list. My docs recently proposed sending my case for review to the regional transplant center to evaluate if I'd be a good candidate. They said it's such a long and involved process that is would be a good idea to see if it's an option in case I need it. I'm guessing that a transplant wouldn't cure the AS, just give a new start with lungs healthier than whatever I had at that point. Hoping to avoid ever getting that bad but glad to have other options. Are you still on a transplant list? At what point do they feel that's your best option? Kelly

Kelly, The process is very long and involved!! My doctors told me that I would have 5 yrs at best WITH the transplant, thats why they are putting off the transplant as long as they can. My doctors said the longer I keep my own lungs the better. I don't think they will do the transplant unless I get really bad again. How bad are your lungs? Natalie

My lungs are doing better again. I just had a round of PFTs today and I'm back up to 58% diffusing capacity. Feeling like things are continuing to improve right now but I crashed hard and fast this summer and dropped all the way down to 40%. The lowest I've ever been is 33%. So far my lungs are don't appear to be scarred much despite being so restricted. And I have managed to recover as much as 80% of my lung efficiency in the past. It's just a matter of finding the right meds to suppress the AS and then time, lots of it, to recover. But I think my docs are wanting to be proactive and try to come up with as many options as possible. I was watching a "grand rounds" medical lecture online about lung transplants and they did mention the 5-7 year survival rate. I personally would like to avoid transplant for several decades! kelly

Kelly, I would talk to your drs about other ways to be proactive. If your able to recover and the scarring isn't that bad I think a lung transplant is a little over the top with being proactive. Its not like anything else, from what I learned being in the process for so long. What meds are you on right now? Are you on any anti-rejection meds?

For the past 6 I've been on mycophenolate/cellcept, prednisone and NAC. Plus we did a week of 1000 mg/day prednisone when I was really crashing and we were switching over from azathioprine to mycophenolate. Curious if the ivig would be a good option for me too.

How many of you also have heart problems due to the AS? I have cardio myopathy but its starting to improve because of the meds and isn't that bad. I just need oxygen when I'm doing anything like walking or p/t now that I'm able to walk around again. My lungs were only at 36% but I didn't need oxygen when I was down now I'm up and starting to move around and I need it even though now my lungs are at 48%. Turns out its just my heart trying to keep up with me. I still need to study this disease, I don't know how it works.

Kelly, I talked to my dr and he said he never heard of any dr doing a proactive lung transplant! bc lungs are so different from any other organ. barbie, I'm on heart meds bc they are afraid I will have a heart attack bc it has to work so much harder bc my lungs are working harder.

Natalie, I didn't explain enough... by "proactive" I meant that my docs wanted to check out the process of transplant criteria and evaluation - just to even see if I would be a candidate and at what point. But it would be a last ditch proposal. I did have some heart issues when my lungs were at their lowest functioning points. Your heart just has to work so much harder and I often had irregular rhythms at pulmonary rehab. They made me wear a monitor and would have me rest when things got too wacky. But my heart did recover as my lungs improved.

I think different types of antibody's with the AS cause different heart problems. I have cardio myopathy from mine because its caused all of the muscle in my body to atrophy including my heart, digestive, stomach has paralysis along with my esophagus being mostly paralized. Does anyone else in here have multiple AS anitibodies? Mine is EJ antibody and PM-SCL antibody along with scleroderma. People in my family a few that is thought I was exagerating my weakness, digestive issues, and breathing problems. They stopped after I was nearly completely paralized. lol. Now they are more supportive. Mine is starting to really improve and I am so happy about that. With this disease I feel like I have a terminal illness that I'm trying to recover from just enough to do somewhat normal things. I hope you all recover enough to do most of the things you used to do and your pain goes away. I think only someone else with the disease can understand the kind of pain we've all felt here.

barbie, that is so true! There are very few people in my life that know I'm not exagerating with the pain and weakness, including my family! I have major issues with my mouth throat and esophagus as well! I get major heartburn and indigestion like you wouldn't believe. I have been put on different meds for it and still chew tums ;like they are candy! One of the big issues my rheum dr has me watching for coming off the steroids is my throat, esophagus and muscle weekness. ASS is a chronic illness that we ae all fighting every single day. I feel like everytime I have a good day its followed by three really bad days. I was just talking today that I would love to have a whole day to feel normal, but I've never had a day, since this all started where I wake up feeling good, go through a full day feeling good, and fall asleep feeling good. Something is also going on it seems! I went from last year at this time in a wheelchair to being able to walk without support in the summer, then I got cancer. my meds got messed with and back to having major issues walking again, I'm not a wheelchair bad again and I am convinced its b/c I go to therapy 5 days a week, but I am walking with a cane and when its really bad or longer distances, my walker. I am hoping that I can get back to being at least as strong as I was last summer. I am a single mom with a very active 9 yr old that has a lot of plans for summer vacation! kelly, I'm sorry I misunderstood, i hope things are well with you!

I don't know how you do it with a 9 year old. Mine was 14/15 when I was so weak I had to use a wheelchair and he had to take care of me. I was more then lucky he is very strong and tall for a kid his age. He just turned 16 and is 6'3", 210 lbs of muscle. I laugh at how lucky I was to have such a strong kid here. I'm not getting muscle back as fast as everyone else in here says they are. I wonder what the difference is. Its taken me 9 months to go from wheelchair to walker/cane use and I still have a very long way to go. My goal is to be able to walk with just a cane by early summer or even better late spring. I was also told not to be surprised if I don't get all of my muscle back and abilities due to scar tissue. Stomach issues for me and it sounds the same for you kelly are from stomach paralysis and I also have ulcers probably from the scleroderma. I am on 80 mg. nexium a day and had to go gluten free and also for some odd reason I can't eat any legumes and that includes peanuts and soy, they are legumes also. Look for you food sensitivites. When you have some stomach paralysis there are foods you just can't break down. It makes a world of difference if you find your triggers.