I would like to share my Inclusion Body Myositis experiences, symptoms and adaptations. I hope someone may benefit and would be interested in hearing any comments. I am 65 years old and my awareness of the onset of this was approximately 15 years ago. I was an auto mechanic and business owner and always quite active all my life. I spent a lot of time walking our very large dogs and found myself tripping a lot. Thinking that I was just clumsy and needing a hip replacement and Hep. C treatment, I got those two issues resolved about 10 years ago. I continued to get weaker (weakness in legs, arms, hands, fingers and ankles) and had to close my auto repair business in 2008. I went to UCLA medical center and had blood work, MRI and EMG tests. They suspected IBM. I had a muscle biopsy through MDA that was inconclusive. MDA closed down and I tried to get a second biopsy through my insurance but was turned down. My neurologist concluded that everything was consistent with IBM and I couldn’t afford to pursue it further. I left it at that and continued to work in the office of an auto repair shop eventually in a wheelchair all day. I was laid off 2 ½ months ago. I am now awaiting a Social Security Disability decision. I can no longer stand or walk unassisted (the extent of my walking is a few steps to the bathroom on a walker leaning against the wall). I need a wheelchair to leave the house. My loving wife is my caregiver. I have a raised toilet seat and get by using a urinal at night. I pray a lot and in spite of everything, try to remain positive. I have always tried to read online about IBM and possible new research, I have recently discovered support groups, from which I have learned up a lot. The one symptom I have and not really seen anywhere in IBM cases are problems with the ankles. I started wearing ankle braces a few years ago because they were weak and bowing in especially when I put weight on them. Now it is like the joints are permanently fused, making it very painful when walking. I wondered if anyone had heard of this. Thank you for this group.
Thanks for sharing! I'm 43 and was diagnosed in May. I've been keeping a blog about my experiences if you want to see how it's affecting someone else. Just keep moving! And be careful!
Here's my blog: http://pdubvsibm.blogspot.com/
Hi John,
Thank you for sharing your story. I have featured this discussion in hopes that others will also respond and share their stories, just as Pdub has. I am ever hopeful for better meds and especially a cure for all types of Myositis.
Wishing you well,
SK
John,
My sympathies as the disease is seemingly relentless. My story is on the forum somewhere but I find it interesting and information to read your story. I was also very active until about 5 years ago and have become slower re walking and have now reached the stage of using either a frame or walker if outside and a stick depending on where I am going. Also have needed a raised seat for about a year now. Not sure what the future holds but as with yourself my better half is absolutely fantastic in anticipating my needs and helping in a considerate way while encouraging me to do it myself where ever possible. Turning in bed is an issue especially if the nights are warm (no AC in my UK house). Swallowing is a careful process and I find sipping water between EACH swallow essential as I am not able to detect my throat being blocked. Carbonated water seems to help the process a little. So I wobble along still mentally active but really slow when it comes to mobility.
Good luck and communicate if you want, Patrick
Patrick,
Thanks for the reply. It is encouraging to hear how others cope with their condition and to know we are not alone. I came across this site: http://lifedisabled.com/category/ where Mike Shirk describes his long journey with IBM. He even wrote a book which I am about 1/2 finished with. Having a condition without a treatment or cure, I believe the best thing to do is to learn from others how best to deal with the relentless progression.
Good luck to you as well, John
John,
I bought the Mike Shirks' book also and read it with interest. Adaption is the key to minimising the effect on life style but everything has limits. People have difficulty I find in getting their heads around how the disease affects the individual concerned. It's not the same as many comparable conditions eg old age, infirmity, accident, broken legs etc. Because it affects all the muscle driven actions including the sub conscious ones associated with core muscles etc it is unique it seems. Keep taking the frustration pills and don't give up....
Patrick
My whole career has been about coming up with creative alternatives to new problems and restating and redefining old problems in a new way. It's almost like I've been practicing my whole life for this. Every time something comes up I have to make a workaround. That kind of thinking is very familiar and very fun for me.
I wait for the next challenge then pounce on it. I know they will keep coming. I'll have to look into this book.
So sorry to read about the struggles that you have had, John. I wouldn't wish it on my worst enemy, let alone a kind person like yourself.
It's so hard to say goodbye to the lives that we were once used to living. This is something that I struggle with daily (I have DM). I also have a very supportive spouse, but find that working with a counselor helps to keep me focused on the positives and continue to move forward with the life that I am so grateful to have now. It can be such a bummer :-(
Know that I'm thinking of you and sending love and prayers your way.
Thanks for the kind words, It is wonderful to have the encouraging support of this group. I too will keep you in my prayers.
Hi John.
Thanks for sharing. I have had PM and now IBM since 2003, no problem with ankles as yet. I am having lots of trouble with stomach and doctors want to remove gall bladder. I have had 2 hospital stays in 2012 with pneumonia and 2013 with diverticulitis. It seems as after each round of antibiodics my body takes longer to recover.
Stay as active as possible and continue to Pray and know I am Praying for you as well!
God Bless you,
steve
Hi Steve,
Thanks for your reply and kind words. I can't imagine going through what you are describing. Having to deal with one ailment is way more than enough. I will pray for your recovery. Keep the faith and you know it will get better. God bless you!
John
Thank you John,
God Bless you and talk with you soon!
steve