The Myositis Association, Patient stories, Polymyositis

Bill Simeral, Wheaton, Illinois

[@vegangrepresent4140]

Omg sir this is so inspiring. I'm in the process of being diagnosed. I have other several autoimmune conditions. I've been terrified so scared. I was into a panic anxiety attack until I saw this. YOU GIVE ME HOPE. I'm crying...there's hope..there's hope.

[@bills4089]

There is life with myositis and most autoimmune diseases. It can be limiting and complicated but I have been able to lead a meaningful and active life despite the extreme nature of my illnesses. Also despite being almost 80. I try to live each day fully and deal with each old or new problem when one appears. Otherwise, no worries about anything. My skiing and golf has been sidelined but working on getting back to both soon.

[@lmc3702]

How are you doing now?

[@melbasalcido4708]

Thank you for sharing your story. I am 72 and was diagnosed with myositis a year ago. Sometimes it’s hard to be hopeful when you hurt all over and after being super active now my day consists of two naps a day. And the worst part no one understands.

[@chelechele2145]

So inspiring..I am trying my best to move forward. I was diagnosed with Lupus in 2018 and Lupus Nephritis in 2019 which affected my kidneys and really put me in a not so good place. Learning how to walk again due to edema...I have to keep going. Please pray for me as I will pray for you.

[@elizabethfalcone4711]

I knew Bill Simeral for many years . He was a gentleman and a good friend to me . I have lost touch with so many but Bill has a lot of knowledge . So great to see him here .

[@lafayettefrierson8402]

if it wasn't for you I would be dead you gave me motivation and strength, to deal with my polymyositis that I no longer have. thank you Bill for everything.

[@mtsilvagt]

Lafayette Frierson + I was diagnose with poly 5mo. ago, it's a painful debilitating condition. I've never felt so sick, and I survived an explosion that claimed my right leg, and almost my life .

[@sherleyl27]

Lafayette Frierson ,I'm 32 and have been diagnosed with Polymyositis in 2015. This disease has left me now disabled and I would like your help with meds experience as I'm going through trials with these teaching hospitals who doesn't know what to do with me. SherleyL27@Gmail. Com that's my email any shared info will be immensely helpful

[@lydiacorrea2589]

How did you get healed?

[@bills4089]

I am not healed but my PM has been in remission since 2006 and it was physical therapy that allowed me to return to an almost normal life after being quadriplegic. IVIG was the treatment that put me into eventual remission. Also have lupus and that has become active again over the past 4 years and still have a substantial loss of muscle from PM that is permanent.

[@bills4089]

Sherl, if your doctors are still struggling to treat you either you or them should contact the Myositis Association. They have a 25 member medical advisory board and will work with your doctors if necessary.

[@gerigarraway3050]

You are such an inspiration for ‘everyone’ with or without this disease. You spoke so eloquently about what you had so bravely endured. Thank you so much for this God bless you and family

[@GauravBhargava]

What a warrior! Attitude is everything 👌

[@joellemartel9635]

Amazing story, gives me a lot of hope that when you put your mind to it you can overcome...

[@KarinWells]

You make my heart sing each time I hear your story. You are an inspiration to others who struggle with conditions that most people think are "impossible." Sharing your journey gives us the roadmap to help make medical miracles a reality for all of us. You have proven that "where there is life, there's hope" and that "nothing is impossible."

[@lucyluu3539]

Praise God for your Recovery.. 🙏🏻 im struggling with fatigue n weakness since 2001. At times i improved but ive had many setbacks.. especially since 2013. I go thru such fatigue n weakness that it's difficult to even hold my phone.. its a struggle to lift my arms at times. I was Diagnosed with Fibromyalgia in 2001 but i don't think it's accurate and i really need to figure out what's causing this and How to improve.. Bless you and Thank you for your Story that is encouraging. Im 61 now and have been out of shape since 2013.. with periods of being able to function. I miss that!

[@dilemmix]

Oh Bill, you have been through so much, I can't imagine! I hope you are still doing well! I'm feeling so sad because my mother has been diagnosed with polymyositis and she is 83. I hope there is still hope for her!

[@bills4089]

Life is complicated but I am doing well as I approach 80 and planning my next ski trip in a couple of weeks.

[@MarS-el7kq]

@@bills4089 i hope you’re doing well

[@bills4089]

@@MarS-el7kq Doing well but less active due to lupus problems with heart and vessels. Still fully able but have not been able to ski since the pandemic. Thanks for asking.

[@MarS-el7kq]

@@bills4089 good to hear you are doing well. Prayers for you

[@bills4089]

@@MarS-el7kq thank you.

[@yvettekopp2450]

You are a role model. Thank you for sharing your experience.

[@kitodom2827]

Hey Bill! I always love your comments on the BBs. And just think, now you're a star! ~cakes

[@sarahhill7328]

I have poly myositis and lupus with hepatitis, it’s also caused ILD. It is no fun, I tell you. Thank you sir for speaking out. I hope you continue to do well 🥰

[@bills4089]

Hang in there. My PM has been in remission since 2006 but lupus came back with a vengeance and attacked my vessels, heart, and lungs. Lungs ok now but have congestive heart failure and pulmonary hypertension as well as some other more minor conditions. I am still able but have had a rough couple of years and no long can ski. Hope to return to golf this year and maybe a little easy hiking. Still not bad with all that is wrong and given that I am in my 80s now.

[@stephmax3124]

Thank you for sharing your story it will definitely help others. Health and wellness to us all ‼ 👍🏾

[@joandickson9566]

Thank-you for sharing your experience with us

[@Kitkat2870]

I'm in the beginning stages of diagnosis...many symptoms of SLE and polymyositis...blood tests ANA positive, elevated creatine kinase, elevated CRP, reduced kidney function, muscle weakness, pain in all joints, swollen right leg, foot and ankle, fatigue and problems swallowing, choking on my own saliva, tremors and twitches in muscles, eye pain, problems walking, unable to open jars or do dishes. The worse is not being able to do the things I used to do and how I took for granted just going out for a walk.

[@jaimeelou8483]

Did you get a diagnosis? I'm just starting in my diagnosis and I have some of the same symptoms as you. I had occult breast cancer in my case tho. Praying you have answers now and are doing well. 🙏

[@osawaruenorense1596]

How is everything? Did you finally got a diagnosis? Just going through each processes now. Thanks.

[@BMWMac1]

Thanks Bill, tremendous video that will help many. Your commitment is truly exception and always has been since I came to know you at 16. Proud to have you as a friend. Mac

[@MonicaRoy6156]

Thank you so much for sharing your story. It was very inspiring. My beautiful sister has just recently been diagnosed with myositis. She started treatment a couple of weeks ago. The doctor is still waiting on the muscle biopsy to come back. I’m pretty sure its going to be polymyositis. She was going through this for quite awhile and was not getting any help. She finally got into Wash U in St Louis. Luckily they had a canceled appointment. Thank goodness since her set appt wasn’t until April. I know she is close to being in a wheel chair but she continues to push through everything and still goes to work. I know you have other medical conditions. I wish the best for you.

[@bills4089]

The doctors at Wash U know a lot about myositis diseases and have been on the medical advisory board of the Myositis Assn for years.

[@lilaccilla]

I have had Very similar experiences ! I have DM , Fibro, and Hashimotos . I was in the first research study at NIH in 1992 . Dr Dalakis study on IVIG . It took me from severe weakness to halfway back to normal in the 3 month trial . Lucky for me I was getting the real thing and not the placebo . The support and help at NIH was absolutely what I needed to boost my confidence in recovery . Like you I was an a life time athlete and it was devastating and humbling . I have been on monthly IV now since then . But recently I am having a reoccurrence of symptoms ! My shoulder s with such pain and restrictive movement in my arms . I bike a lot , but now I am unsure why my arms are aching and shoulder joints are screaming on my normal bike rides . In the beginning of my DM I rapidly deteriorated and could not swallow solids without lots of tries and water . and liquids also came out my nose . Choking and not able to stop salivating and choking on my own saliva , I had to sleep sitting up. ...Thanks for your incredible story . I am not sure now at present if I should go back on prednisone until this flare is over . I am Needing to find a support group and good doctor . This is coming on pretty rapidly .

[@busimokonyane7377]

I've been diagnosed last year October and right now I believe that I'm healing.

[@bills4089]

Hopefully you are going into remission and will stay there. There is currently no cure for a myositis disease like PM although mine has been in remission since 2006. I also have SLE Lupus and it was also in remission for a number of years but has come back with a vengeance. I continue to "support" the local medical community with all the problems that lupus has caused.

[@user-sr4wp4oz6q]

I recently diagnosed autoimmune disease polymyositis /scleroderma tell me how u remission

[@lf7065]

Thank you so much! Question: what dietary and supplemental approaches do you follow, Bill? 🙂

[@bills4089]

Really no special diet and minimal supplements. I eat moderately and have cut down over the years on red meat but do not strictly follow any diet although I do believe that some patients benefit from an anti-inflammatory diet.

[@ruthvanwyk4042]

I’m absolutely amazed @ your efforts to rehabilitate and to be an advocate for polymiositis.. I have lost my wife to the disease and can identify with your struggles in terms of mobility. Prednisone had the effect of radical weight increase . What would you say to a dosage of 1000mg? Over a sustained period?

[@bills4089]

I assume that is an IV dosage? Orally, 60-100 mg is usually the highest and you do not want to be on really high doses any longer than necessary. Had very high doses early on in the hospital trying to save my life but don't remember the dose. Probably was methylprednisolone. Was not effective and it took IVIG to save my life. After that I was on some level of prednisone for about 6 years, then off for years but the last 4 were at low maintenance doses. Now on a low dose, 7mg. I was fortunate to never gain any significant weight.

[@janicebrocke8528]

wow interesting connective tissue

[@jazminchisley7734]

I’m 18 and I’ve been diagnosed with polymyositis

[@raisnr8765]

Me too :')

[@lf7065]

Stay strong! I'm 55 and just diagnosed with PM. Let's fight this!! 🙂

[@bills4089]

Hang in there and focus on getting the disease under control. Nobody likes the meds but PM is usually treatable. Diets can help but not as a primary treatment no matter what Dr. Google says. Physical therapy and continuing exercise is needed to make a good physical recovery and has also been shown to be anti-inflammatory. Keep on moving even if it is minimal.

[@joseluiscontreras3902]

My daughter has been recently diagnosed also with polymiositis , she is devastated, and I'm as a father also devastated, please need advice help!!!

[@user-sr4wp4oz6q]

​@@joseluiscontreras3902 how is it daughter now I recently diagnosed with polymyositis

[@cassandracummings115]

Where is the Polymyositis Association and how do you become a part of this community to receive information? I was diagnosed in 2018 and would appreciate some communication on ways to heal from this disease. Thanks Cassandra

[@estelacamacho3072]

I have polymyosites, and it's very difficult, cuzz it's been attacking me really bad, and I struggle alot abouth me doing my activerites,,, its hard😭😭😭

[@lucymartin3814]

3 months ago I was diagnosed with Dermatomyositis and I believe it is getting worse.

[@tiffiniludwig5766]

I hope you're doing well now and getting the treatment you need. I was also diagnosed with dermatomyositis around 6 months ago. Stay strong 👊🏻💛

[@lucymartin3814]

Tiffini Ludwig thank you, ive been back to the doctor since this post and honestly its up and fown since. How do you manage your symptoms?

[@tiffiniludwig5766]

@@lucymartin3814 I've been on hydroxychloroquine for the last year. My symptoms started with a purple rash across my knuckles and elbows. When I went to my dermatologist he diagnosed me with skin lupus and rheumatoid arthritis and sent me to a rheumatologist for a second opinion. The rheumatologist diagnosed my with DM and sent me out the door, he was very dismissive. I dont think he knows enough about DM to properly treat it. This was about 6 months ago, my symptoms have not gotten better and we even upped my hydroxy.. I have an appointment this upcoming Thursday with a autoimmune dermatologist (specialist in DM and other autoimmune diseases realating the skin) I'm so happy to finally get some answers and proper treatment!! Sorry for the novel, lol... have you found a treatment that works for you?

[@bills4089]

Tiffini, most doctors will treat either DM or PM with stronger meds like prednisone combined with methotrexate or Imuran. Sometimes with other treatments. It is important to treat any case aggressively in the early stages to avoid its' progression and any permanent muscle damage or secondary complications. Exactly what treatment will vary according to the disease and which autoantibodies show up.

[@lucymartin3814]

Bill S I’m currently on prednisone along with a big purple pill. Lol I’m not able to get to my bottles, so I don’t know the name. It’s actually working wonders though. My knuckles aren’t as red and neither is the pain in my legs there.

[@rockykoast7065]

Auto-immune diseases do weird sh1t to you! I have some kind of inflammatory problem that seems to be at the root of my neuropathy. Corticosteroids seem to help..

[@bills4089]

Autoimmune diseases are strange and unlike other types of disease. Most can be treated and it is up to us to learn to live with whatever we have and make the best of life. Not an easy task but I have to say that life has been good to me the past 17 years.

[@manzoorahmed4400]

Good morning I'm under attack of myositis. Please share exercises video and diet and a dr.in Pakistan

[@makhloufbenzemma4144]

Je suis de France et est été détectée une myosite avec traitement par corticoïdes et immunosuppresseurs ! Je fais des exercices légers avec des élastiques pour ne pas trop forcer sur mes muscles! C’est pas mal et vous, avez vous trouvez des exercices car en France il n y a aucune vidéo sur ces exercices et les lunes ne connaissent pas cette pathologies?bonne journée madame

[@katiejo1095]

Ok, what is Lupus? How does it eat anything... what's rabbithole.

[@bills4089]

If you want to screw around with people I suggest you go to some social media site. You have a computer so if you don't know what lupus is look it up. 1.5 million people have it in America, possibly more.

[@bills4089]

FYI, I do not have a fungus.

[@eeguerrero1]

Lupus is an autoimmune disease- basically your own body attacks itself that causes inflammation in the body and damages organs.

[@janicebrocke8528]

my mom dies from poly myositis age 43

[@janicebrocke8528]

immunoglobins

[@katiejo1095]

You have fungus.

[@bills4089]

Not a fungus. Autoimmune diseases of unknown origin.