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Myositis: JO-1 Antibodies

Updated on March 31, 2015
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A Myositis Specific Antibody

JO1 antibodies are a marker for people with Polymyositis or Dermatomyositis. These antibodies are very rare and classed into the category of rare diseases. They are also one of the most likely antibodies to be present with Myositis related interstitial lung disease.

Individuals with Jo-1 antibodies often have a distinct syndrome called Antisynthetase syndrome. We look normal and most of the time we act pretty normal but the truth is that we are not anywhere close to having the capabilities of living a normal life. Our lives are spent fighting a constant battle to maintain our later quality of life.

I have Jo1 antibodies and they are the hardest battle that I have ever fought. Life can be very difficult for those of us who live with these antibodies. Our lives are stolen from us but because of the rarity of our illness we are often left to fight our battle alone. I want to create awareness of this.

I want the world to see this rare illness, to learn to understand it, and to help us in our battle to survive it.

Quote by Dr. Gourley TMA Discussions: "anti-Jo-1 is a autoantibody produced to attack a protein necessary for our body to make certain proteins".

Discover what your antibodies mean.

Dr. Robert Cooper of the UK is doing some amazing research into the significance of antibodies within Myositis. You can view the video of his presentation at the 2011 Myositis Patient conference.

Understanding what your auto-antibodies mean.

My battle.

Although I wish that it was not an aspect of my illness that must occur, I often am forced to sacrifice things that I would like to do so that I can accomplish the things that I must do. I tire very easily.

My health is very fragile and a cold or a flu is very dangerous for me. I also have difficulty dealing with the new light sources that are now mandatory in both Canada and the United States. I limit the time that I spend out of my home. During periods of extreme flare this is an aspect of the illness that happens all too frequently.

My illness flares come in waves of varying intensity. When my muscle is being attacked then my body requires maximum rest to prevent damage. I must stop virtually all extra activity and allow my body to fall apart. The key is to do enough activity so as not to lose the muscle but to reduce activity to a point that muscle is not being damaged during its weakened state. It is an ever changing balancing act.

In about a week or two I will attempt taking short walks and doing mild yoga exercises. If the illness gets worse then I know that the illness is still battling a quiet enemy, and I will stop and wait.

In another week I will try again to increase my activity levels and I will continue to use this method of attack until I am able to begin rebuilding my muscle again. I then begin a slow and steady increase in the amount of exercise I am able to do, until the illness once again demands that I stop, and substantially decrease my activity once again. It is a process of rebuilding and of falling apart.

My diet has changed greatly and I have grown increasingly sensitive to a number of foods. I require good quality protein consumed often throughout the day or I crash.

When the illness affects my circulatory system or my metabolism then a lot of my fight is with increases to my medications, salt water soakings, alternative therapy, diet and lifestyle change. My use of antioxidants is maxed during periods of extreme flare.

When the disease goes into a rheumatoid flare then I still have some ability to fight with exercise. The pool allows me to maintain muscle strength even during the flare as the water takes the stress off my joints. I can also usually continue my yoga exercises during these periods but generally this is in a much reduced capacity as I can no longer get myself down to the ground. I do only the standing exercises during these flare ups.

My recent article explains more fully Jo-1 antibodies and how I have learned to live within this illness. If you have this illness please give this article a read.

http://ladylorelei.hubpages.com/hub/tips-for-living-with-myositis-jo-1-antibodies-antisynthetase-syndrome

Diet greatly influences degree of fatigue and the degree of flare.

Good quality protein and an antioxidant rich diet is very important for optimum health.
Good quality protein and an antioxidant rich diet is very important for optimum health.

Spice up your food with ginger, turmeric, cinnamon, and garlic.

Many foods can act as a natural therapy for illnesses such as arthritis or other inflammatory based illnesses. There are many herbs, spices, and other foods which can help to improve your health.

Ginger, turmeric, lemon, onions, and garlic are just a few super foods which can help to naturally reduce inflammation. So spice up your food. It may help you to feel better.

Pamper yourself. Relaxation, laughter, and a stress free lifestyle are vital to those with chronic illness. Laughter really is the best medicine.

Support groups: www.myositis.org or you can also find groups on Facebook such as the Myositis Ramblers.

Muscle shrinkage from shoulder up the neck pulling up my right arm so it no longer lowers to my side.
Muscle shrinkage from shoulder up the neck pulling up my right arm so it no longer lowers to my side.

Shake off the stress and get your endorphins working for you.

An extreme bout of illness will leave me relying on prayer and the power of endorphins to pull me up. I do everything possible to live in an imaginary stress free existence.

I play my favorite music, sing, dance (although sometimes this is nothing more than a painful shuffle), watch comedies, laugh, and do everything that I can to encourage a peaceful happy feeling to engulf my body. Singing helps to keep the mucous from building in my lungs.

As my illness has advanced there is some damage acquired over the years. Generally if I can pull myself out of each individual flare okay then the damage is nil or minimal. If I cannot get the flare under control then this is where I have permanent disability.

My right arm and shoulder show permanent damage and my swallowing ability has decreased. I notice now that I must be very careful in the pool because water goes directly down into my lung area all too easily. Choking has become more of an issue as the disease progresses.

Life Revolves Around The Flares.

I am constantly looking for a way to be well, constantly fighting to maintain as much of myself as I can until the day comes when they discover what is making me ill, and I can have that blessed remission that will let me be me again. I would love to live without having to worry about running out of energy or doing more damage to my body than I should.

There seems to be a protein diet link which can affect my health levels but I have not figured out why or how it happens. I do seem to have to consume protein throughout the day and insure that I have a good quality protein such as eggs or whey.

When I attended the 2011 Myositis patient conference others who suffer from myositis also mentioned that eating a high protein diet seems to help them. I try to include one egg a day into my diet plan and find that if I forget to include it for a few days that my health and energy levels are adversely affected. I eat protein throughout the day and it seems to help increase my stamina.

The various inflammatory periods that I experience come and go in waves. Sometimes only one area of inflammation attacks me and sometimes there is an all out attack launched against me. I deal with each inflammation flare individually and on the terms that the illness itself sets out.

My lungs are an area that I am constantly fighting to maintain. Lung specific steroids are used throughout the year generally for two to three month periods at a time. As the illness allows I fight for my right to be able to walk or dance. I am always looking for opportunities to improve my lung capacity.

Generally if I avoid hills and stairs then my stamina levels and joints hold out pretty good and I am able to get in some degree of walking. When my joints get inflamed then I used to head for the pool. The past few pool visits though had me concerned as I now seem to choke very easily on any water that might accidentally get splashed my way. Perhaps the weakness in my throat muscles now makes it more difficult for me to fend off these little unexpected intakes of water. It is a little scary.

When the muscle weakness or pain forces me to fall completely apart then I begin to walk again as soon as I am able to. It seems that I spend my life falling apart and then rebuilding again as soon as I am able to.

I wait for the day that I won't have to stop what I am doing because I am too tired to continue. I wait for the day that I won't have to go home and recuperate. I would love to be strong enough to just go work and play like everyone else but I currently feel that I live in my own little world designed specifically for me.

Muscle damage myositis Jo1 antibodies
Muscle damage myositis Jo1 antibodies

Muscle Damage From Myositis.

My right arm no longer lowers to my side. It is believed that the muscle leading from the neck down into the shoulder has shrunk, this raises my shoulder, and pulls up my arm. I was working part time at a call center to supplement my small government disability pension when this damage occurred.

This now permanent additional disability occurred because I continued to work after my hand and arm became inflamed. Because I did not have other income options at that time I continued to push myself at work even when I knew that I should not.

I did not have a very understanding physician at the time and he was reluctant to sign the papers which would allow me the unemployment benefits needed to supplement the income that my part time job provided. I was not able to have the much needed rest I needed to recoup from the current flare. By the time my last appointment with this doctor occurred the inflammation in my arm and shoulder were more than obvious. He signed the papers, but it was too late, the damage was done.

The strangest part of this illness is that many times the inflammation does not show up on the tests that are currently recommended for the symptoms displayed. This could be because most doctors test for this illness just as they would for arthritis and look for CPK involvement. (There is now some indication that it could be enzyme activity creating the symptoms and this would not show up as inflammation.)

I knew that the extreme pain and fatigue that I was suffering, were warning signs for me to stop everything and rest, but my physician did not. My pain did not show on the tests that were given and my complaints were not acknowledged.

I usually disguise my extended arm by wearing bulky clothing or by holding my arm folded across my body. My arm will come down somewhat if I do everything perfect (or in other words completely quit working and living) but it has never come down fully since I acquired it. Physiotherapy did not help and the physiotherapist that I have since seen for it concludes that it may never come back to me.

I have JO-1 antibodies and this is one of the things that this illness has done to me.

Warm water or a light foot massage can help to increase circulation.

Conair Foot / Pedicure Spa with Bubbles
Conair Foot / Pedicure Spa with Bubbles

Soaking your feet in Epsom salts is not only relaxing but it can also help to ease muscle aches and cramps.

Epsom salts contain magnesium which is easily absorbed through the soles of your feet. Magnesium helps soothe muscle pain.

 

Adapting to a disability is easier when you accept the new you.

Accepting that you are not the same person that you were before you became ill can really help to adapt to the illness much easier. Do not expect your body to follow the same routines that it did when it was healthy.

Learn who you now are, what your capabilities are, and adapt to the new person that you have become. Changing your lifestyle to fit your illness will greatly improve your quality of life.

With inflammatory illnesses never doing too much or too little of any activity seems to reduce the stress or inflammation involved. Living life in bits and pieces, or a little of this and a little of that, might now be a viable lifestyle option to adopt. It will allow you the energy to accomplish a great deal more than you would otherwise be able to, and thereby, improve the overall quality of your life. It also works to reduce the degree of pain that you are forced to exist in.

Remember to budget your energy. Your body is busy using up it's energy resources and there may not be much left over for you to enjoy life with. Fatigue is a natural part of arthritis, the more active your illness, then the more tired that you will likely be.

Budget out your energy reserves like other people budget time or money. First do the things that you must absolutely do. Second do the things that you want to do (which is logical because why would you even want to exist if your life has no rewards). Thirdly and with whatever left over energy is remaining, do the things that you should do but that won't really matter if they get done that day or not.

I put whey powder into yogurt or a smoothie to give me added protein.

Let Your Endorphins Out To Play

When you participate in pleasurable activities like smiling, laughing, exercising or playing, your brain does an amazing thing and releases a little chemical message known as an endorphin.

These endorphins are feel good messages that have the power to actually remove physical and emotional pain. They travel down the spine, and then throughout your body, sending a feeling of well being as they go. These endorphins not only have the ability to relieve pain but they also have the power to make you feel happy. So remember to take time to play - It really is important.

Had you heard of JO1 antibodies or myositis before your visit?

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    • profile image

      anonymous 8 years ago

      Welcome to the Health Problem Group.

      Great Lens. 5* I can really recognize some of the things you go through and I wish you the very best.

    • mysticmama lm profile image

      Bambi Watson 7 years ago

      Woberful :-)

    • darciefrench lm profile image

      darciefrench lm 6 years ago

      Wow- your health symptoms sound so similar to mine. I will be asking my dr about these antibodies, thank-you. Excellent lens.

    • javr profile image

      javr 6 years ago from British Columbia, Canada

      Thanks for sharing your plight. You must be an inspiration to others similarly afflicted. They should heed your words to look after themselves when symptoms first appear. You have been blessed again by a Squid Angel.

    • Lady Lorelei profile image
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      Lorelei Cohen 6 years ago from Canada

      @javr: Thank you for the compliment and the blessing. Both are very much appreciated. Best wishes.

    • CCGAL profile image

      CCGAL 6 years ago

      While my heart goes out to you for what you are experiencing, at the same time I am so appreciative that you've documented this here. I had never heard of these antibodies, but I suspect I know somebody who might have the same thing - her struggles sound remarkably like yours. Thank you for responding to my thread in the forum - I'm featuring this lens under the stay healthy section of my 99-weeks lens.

    • jodijoyous profile image

      jodijoyous 5 years ago from New York

      Wow. Thank you for sharing this (and I hope it helps others too). Cherries are first starting to show up in the markets. I think I'll go get some the next time my back starts bothering me.

    • Lady Lorelei profile image
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      Lorelei Cohen 5 years ago from Canada

      @jodijoyous: Your comment reminds me that I have not updated this lens for awhile. I guess that is my job today then. Thank you for stopping by.

    • Bellezza-Decor profile image

      Bellezza-Decor 5 years ago from Canada

      Thank you for sharing this traumatic experience. I am glad cherries are being recognized for their healthful properties, besides, they're my favorite. All the best to you!

    • akumar46 lm profile image

      akumar46 lm 5 years ago

      Thanks for sharing your story of coping with jo1antibodies......great lens about you efforts..thanks.

    • Virginia Allain profile image

      Virginia Allain 5 years ago from Central Florida

      I have a friend with scleraderma and will have her look at this in case she has some of this too. So scary to cope with such illnesses. Best of luck to you.

    • Lady Lorelei profile image
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      Lorelei Cohen 5 years ago from Canada

      @Virginia Allain: There are many alternative treatments that can be used to help with the effects of inflammation. I just wish that we knew all them. Best wishes.

    • Lady Lorelei profile image
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      Lorelei Cohen 5 years ago from Canada

      @Bellezza-Decor: Cherries taste great too which is always nice in an alternative therapy treatment ;)

    • Lady Lorelei profile image
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      Lorelei Cohen 5 years ago from Canada

      @darciefrench lm: They are extremely rare. There are many inflammation and fatigue based illnesses though and with all the pollution in our world now I really think these illnesses are becoming more common.

    • Lady Lorelei profile image
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      Lorelei Cohen 5 years ago from Canada

      @anonymous: Thank you and the best of wishes to you also.

    • Bellezza-Decor profile image

      Bellezza-Decor 5 years ago from Canada

      Try eliminating cooked rhubarb, cooked spinach and no more than 2 cups of coffee a day. All the best!

    • Lady Lorelei profile image
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      Lorelei Cohen 5 years ago from Canada

      @Bellezza-Decor: I am very careful with the foods which I eat on a daily basis. Life is a constant balancing act. I hope that you are well. Best wishes.

    • profile image

      anonymous 5 years ago

      You are truly wonderful. I too, have Jo-1 antibodies. (Dermatomyositis), Have redone my lifestyle... ..(damn angry flare-ups) ergonically adjusted my ENTIRE life to them. They DID win this. I have no choice in this one. My husband is disabled as well. The thought of being 41 and have been 'hit' with such a thing.. hard to swallow still. The bouts i've dealt with... crippling, scary, and unexpected. Always being gunshy about my own HEALTH... how can you be a dependable person to anyone? I sound angry... i'm not... just frustrated and right now.. a little unexcepting. You keep up your light... i'm still working at turning mine on.

    • Lady Lorelei profile image
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      Lorelei Cohen 5 years ago from Canada

      @anonymous: I am glad that you came by. This is a indeed a very frustrating illness. I think it is the inability to have control over any aspect of our lives which makes it so much so. I hope that you visit www.myositis.org the support network there is amazing. Best wishes to you.

    • profile image

      anonymous 5 years ago

      You amaze me! What a balancing act you have every moment of your life , always getting through or preparing for what is to come next. Your resolution and positive outlook are inspiring in the face of your daily battle. You just cannot afford even the smallest bit of additional stress to come in. You are a valiant warrior Lady! Carrying you in my hearts prayers, may you receive a refreshing....

    • hotbrain profile image

      hotbrain 5 years ago from Tacoma, WA

      This is the first I've heard of JO-1 antibodies and the problems they cause. I love your lenses and I'm glad to have read this one... I think it's probably been helpful to many people. The information and picture of your extended arm is helpful too. I didn't know that could happen. I wonder if curcumin helps at all? It is a supplement, an extract of turmeric, that is supposed to help with pain and inflammation. Best wishes to you.

    • Lady Lorelei profile image
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      Lorelei Cohen 5 years ago from Canada

      @CCGAL: Jo1 antibodies are very rare but there is a new statin induced form of myositis that is coming up from the new cholesterol lowering drugs. If your friend was on statin drugs then she should have her doctor check to see if this is what happening to her.

    • Lady Lorelei profile image
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      Lorelei Cohen 5 years ago from Canada

      @anonymous: Thank you Tipi. You are always such a calming force in life. I have had this illness for so long that although it is frightening when the unexpected comes up (or when it gets dangerous) I also have learned who my enemy is and can generally fight the effects of having Jo-1 antibodies in me. Scariest part is that when we go down, we sometimes cannot come back, so whenever a severe flare comes on it is very frightening. I want to keep playing on this good old Earth as long as I can.

    • Lady Lorelei profile image
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      Lorelei Cohen 5 years ago from Canada

      @hotbrain: Jo-1 antibodies are extremely rare and classed under rare diseases. I just came back from a myositis conference and there is a doctor in England studying myositis which could help us tremendously if only even in diagnosis and treatments. His work is amazing and he has already discovered much about Jo1 individuals.

    • Titia profile image

      Titia Geertman 5 years ago from Waterlandkerkje - The Netherlands

      Congrats on the Purple Star, well deserved. I didn't know particular about your rare illness JO-1 antibodies, but I know people who have similar symptomes of fatigues and not being able to live a 'normal' life. I do hope they will find out what causes it, but as with so many things, it will take a lot of time. Thinking positively the way you do, is one part of keeping you going. Good luck and best wishes.

    • lilymom24 profile image

      lilymom24 5 years ago

      This is something I had never heard of. Wishing you the best and congratulations on your purple star. Its well deserved.

    • profile image

      anonymous 5 years ago

      I think of this article now and then and the important and personal information you share about dealing with Jo-1 antibodies or mysositis....keeping my fingers and toes crossed for you as I know first hand about dealing with a chronic illness and its devastating effects on living....leaving a little fresh angel dust!...*

    • profile image

      anonymous 4 years ago

      Hi, I was diagnoised with polymyosis in 2000. I was a healthy 40 year old female, my symptoms came on me quickly. I started having terrible pain in my knees and then it progressed to my hips, hands, feet, all over. My primary doctor thought it was just arthristis. I was sent to a rhumatoligist.where I underwent every test you can think of. I had a muscle byopsi and it showed up negative. Finally the Jo1 showed up. It was a evident I had polymyositis. My cpk went to as high as 2700. I was put on predisone 60mg a day (a cure and a curse). Also methotrexate and Imuran. My life was turned upside down. It took me about 4 years to come off the predisone. I would have lab work done about every 3 months to check my levels. After several years and my levels were normal I started weening myself off metotrexate and the imuan. I have been able to live a pretty normal life. Last year I had to have a DNC, before surgery they did a chest xray that came back with some areas the doctor felt I needed to get checked out. I ended up having a bronoskypy (excuse my spelling) and it showed up mild pulmary fibrosis. In the last 2 months I have been fighting to get through each day. I have been seeing my RA doctor every 6 months and I have just had labs and waiting on the results. I am scared that my cpk is up.. I feel just like I did when I got sick in 2000. I spend more time in the bed or in a recliner than anywhere. I can hardly get in or out of bed. There is NO more soaking in the tub, too hard to get out. I have long showers just so I can get in the warm water to help my joints. My elbows hurt so bad and my hands swells. I went to see my primary Doctor last week and we know that I have osteoarthritis, but he said with having the JO1 that it's possible I have lupus. I read all the time about polymyosis and the connection with JO1. I understand that lupus RA several other autoimmune diesease can be associataed as well. My doctor mentioned to me that sometimes the JO1 is connected with having an underlying form of cancer. I am hurting so bad and unfortunaltly cannot take any pain meds. Anything that is associated with codeine I cannot take. I'm having a hard time mentally dealing with this relapse. I am a very active person and I usually always overdo myself. I don't like to ask anyone to help me so I go ahead and do it. I love working in my yard and this is where I overdo it. I will end now I just ran up on your website and enjoyed reading your blog. Sometimes it just helps to know that someone else is going through what you are. Thanks!

    • profile image

      anonymous 4 years ago

      My daughter was diagnosed with lupus and her symptoms appear to mirror those that I heard about with Jo1. Where do we begin our research? She's had three strokes, migraines, severe joint and muscle pain, intestinal issues, early onset menopause (she's 33), an aneurysm in her jaw, eye twitches and other issues.

    • Lady Lorelei profile image
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      Lorelei Cohen 4 years ago from Canada

      @anonymous: With inflammatory illnesses there can often be an overlap of disease activity so it is always a good idea to have your doctor check for antibodies as these can help with diagnosis. JO-1 antibodies can be accompanied with many arthritis based illnesses including lupus, rheumatoid arthritis, and scleroderma. It is one of the reasons why myositis is such a difficult illness for many physicians to understand and to correctly diagnose.

    • Lady Lorelei profile image
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      Lorelei Cohen 4 years ago from Canada

      @anonymous: I thank you so much for stopping here and I hope that you are feeling a little better. Spring is also a bad time for me largely because I so want to get outside and play like everyone else, so like you I overdo it, and wind up getter sicker instead of healthier. Please double and triple check with your doctors before you use methotrexate again. It is a drug that people with JO1 should only use under the most absolutely necessary circumstances as it can damage our lungs permanently and actually cause us to be more ill than we would otherwise be. Be well.

    • Lady Lorelei profile image
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      Lorelei Cohen 4 years ago from Canada

      @anonymous: The only really good thing about this illness is that it is constantly changing. I think this helps to slow down the permanent damage aspect of this disease (just my theory anyway).

    • profile image

      anonymous 4 years ago

      oh my gosh - I nearly died from pnemonia 4 years ago (I started with swollen painful wrists and an irritating cough - then over a week gasping for breath) was treated for pneumonia but nearly lost my battle as I was being treated just for this - then was discovered jo1 - huge doses of steroids and 6 weeks in hospital. Final diagnosis jo1 pneumanitus - polymyositis I was 39. My consultant who discovered this is absolutely wonderful and is always there for me.Have finally got from 50mg steroids down to 3 mg a day with azathiaprine. But trying to find people who understand everyday life now - and put into words how every day is different and a battle. How I can look fine but feel 'crap'. How just doing one job in the house one day can tire me but can manage it the next week. How I can manage the gym one week but not the next. How to explain to the children 'I just need half an hour rest' Your piece has been sooooo fantastic to read - exactly how I feel and am. Make me think that I am not going 'mad' and should not feel guilty that I am claiming disability when people look at me and I can see in their faces that look that says 'i'm a taxpayer and you don't look ill'

      I felt such a weight lifted from me when I read your article - thank you so much

    • Lady Lorelei profile image
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      Lorelei Cohen 4 years ago from Canada

      @anonymous: I am so glad that you found your way here. You are not alone. There is much misunderstanding surrounding Jo1 antibodies and myositis because it is so very rare. I hope you noticed the links to myositis support groups listed here because it is a life saver just to talk to others who suffer from this rare illness. The very best of wishes to you.

    • profile image

      anonymous 4 years ago

      Hello :)

      I have being seeing a rheumatologist for a condition in my feet and sometimes my hands for inflammation, redness and pain. He did some tests and they have found that I tested positive to Jo-1. He thinks that I may have a condition which is a variation of reynauds disease. He is not sure if I have Jo-1 or if the result was wrong somehow. He wants to test again in 6 months to see if it is still prevalent. I am only 21 years old and having read all of your information here, I am just really hoping and praying that it was a mistake somehow and I don't actually have Jo-1. Fingers crossed! Thanks for sharing all of your information, it was very educational to someone who had hardly any knowledge of what Jo-1 was.

    • Lady Lorelei profile image
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      Lorelei Cohen 4 years ago from Canada

      @anonymous: I am sad to hear that they have discovered that you have Jo-1 antibodies but glad that it was discovered early. Finding a good support group and as much information as you can will really help you. My very best of wishes to you. I was 26 when my illness became a real issue.

    • profile image

      14 months ago

      What is your JO-1 level out of curiosity?

    • Lady Lorelei profile image
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      Lorelei Cohen 14 months ago from Canada

      S: I honestly have no idea. It is something I have never asked. I just know that it always shows so is something that remains with us.

    • MrsSmudge profile image

      Sue Smith 11 months ago from Gainsborough, Lincolnshire, England

      I was given a diagnosis last week of Antisynthetase_syndrome with anit jo1 - it's been one heck of a roller coaster since then but I think your writing has been about the best and most informative that I have managed to find. Thank you so much for putting down you words because for a non medical person like me it has been a great help. My consultant has been amazing and even told me to go and research it but alot of what I was finding was very intense medical information which was over my head and very confusing.

      Your information however has really helped to open my eyes and understand more of what I am facing, I see a lot of my symptoms and because it's all so new to me it's helped me see that these are symptoms and not just something that happens to be going on. Thank you again you are an inspiration when I needed it most to get my head round something so complicated x

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