my life with Polymyositis
About 7 years ago (I was 77 then) I began noticing body weakness, first, gentle, then more acute. I needed a cushion or two to rise from a chair, needed bars and a raised toilet seat, experienced knee pain, and had difficulty swallowing. My experiences with several diagnoses are are follows: 1) simply getting older, 2) need one new knee, then another 3) spinal stenosis and will need upper spinal surgery soon, and 4) a muscle neurologist suggested major surgery of my spine I was then referred to an elderly neurologist who in blood samples noticed and extremely high levels of Creatine Kinase, and record levels of liver ANA and ALT enzymes, I was then then referred to another neurologist who, after eliminating ALS, MS, and polio ( I had at age 5-6), said "you have a very rear disease called Polymyositis." It was manageable, but not curable. I was put on extremely high doses of Methylprednisone and physical therapy. but in the meantime, the date for a knee replacement was two weeks, away, and I needed to cancel that, and I tripped on my cat and broke my left arm. but I gradually gained muscle mass and became stronger. So now, I live a fairly normal life (for an 84 year old male). I still have my two original knees and I never had that prescribed spinal surgery. My doctor son said that at the time of correct diagnosis, I probably had 1 year to go. I owe my life to two Duluth, MN St. Luke's Neurologists, Dr. Avello and Dr. McKee. I would love to talk with other Polymyositis patients.
It took forever to obtain my Dx (Dermatomyositis) and when finally confirmed by a dermatologist Primary at the time refused to accept it! Finally, I was referred to a rheumatologist and Neurologist who have me in a stable condition. My situation was very grave-could barely move, had to be hospitalised and had to have help just turning over in bed! Now I'm on monthly IVIG, trying to get off the prednisone (ugh!), and also on Rutuxin. It's difficult having a disease that doesn't present "symptoms" and people don't realise how difficult just getting through the day can be! Some days are pretty good. On other days I just want to sleep. Once upon a time, I was super active, up and running all the time. It has now been 3 years and I still have not adjusted to this type of lifestyle. I have one child at home-16 yrs old and he has CP. We both work at moving and keeping as active as possible. Before this disease hit me, I didn't relate to why he couldn't move quickly and stretch out. NOW I know! Sometimes that is a good bond for us.
Hi, again, Tinka. WOW WOW WOW... That's all very intense. I love that you are able to view the situation as having lead to a special bond with your dear son, The link I sent in my last reply really resonated after reading your story...there is a link on it to share your story. I highly encourage you to think about doing so... you could reach others and add hope, too. Love, Gina (Team Member) Here it is, again: https://raredisease.net/sponsored/myositis-stories-support 
, being able to find a gift in a difficult situation is a gift in itself. I'm not glad that either of you are suffering, but glad that it has helped enrich your bond. - Warmly, Donna (Team Member)
Hi Bill. I have never talked with anyone about this before now. I was diagnosed at age 40, after the birth of my second son. Nobody knows. I am getting IVIG Infusion every 4 weeks until I am no longer on this planet. Thankful for that. Please take care.
Tagging , so that he can see your reply above. I'm glad for you that Bill's shares helped you. Blessings, Gina Miller, Team Member
, I'm so glad to hear that you found a doctor with the necessary knowledge and that you are well and stronger now!. I'm also glad that you avoided unnecessary surgery. There are so many stories about the metals used in implants. Also, my dad had multiple spinal surgeries, and lived in constant pain until his passing in 2018. In one of his surgeries, the surgeon fused the wrong three discs! Thank you for sharing your miraculous story! - Warmly, Donna (Team Member) Hi Bill,Thank you for sharing about your long journey to a correct diagnosis. I'm so glad that you finally found some providers that have been able to diagnosis you. Have you checked out this site for potentially connecting with other polymyositis patients? This page has links to myositis support groups based on specific states.https://www.myositis.org/patient-support/support-groups/find-support-group/ Wishing you the best of luck in your search. Perhaps a fellow patient will see your post here, too? I know how sweet and helpful it can be to connect with patients traveling similar challenging rare disease journeys. Gina Miller, Team Member
