Hey there,
Thanks for having me in the group. I'd like to "meet" anyone that has IBM in the group or is helping someone with IBM. I'd love to pick your brains. I just got diagnosed. The doc thinks it's about 10 years old based on the amount of damage seen in the MRI of my thighs. But it was the last 2 years where I noticed due to strength loss. Plus I'm young (43) for this malady. Anyway, have a great day all!
It's nice to meet you, Pdub. You can check out our IBM group by clicking on "Groups" at the top of the page. I am sorry IBM came so soon for you. I hope new treatments emerge soon.
Thanks!
Hi, sorry to hear that you have IBM, I also have it but am much older than you 66, Happy to help if I can.stella
Check out the book “Rolling Back” by Mike Shirk. I have a Kindle application on my iPad. So, I bought the book on Amazon and downloaded it to my Kindle. Mike is in one of my Facebook myositis groups. He has lived with IBM for many years and his book has helpful tips. Also check out TMA.org for more info on IBM. The Myositis Association hosts annual conferees-Ive been to two. They have sessions specific to IBM as well as the worlds top drs. there. Past discussions are available on YouTube-key words the Myositis Association. This years conference is in Reno and you can meet fellow IBMers. I have Dermatamyositis. Sorry about your diagnosis.
I was diagnosed at 29. Do you go to a large teaching hospital? How was IBM confirmed? MRI? Muscle biopsy? Myositis specific antibodies? Does your dr see other IBMers? Sorry for all the questions-I don’t want to overwhelm you. 
Thx guys! I was diagnosed at Johns Hopkins. Dr. Chaudrhy and Dr. Mammen were involved. It was an MRI of my thighs that finalized it all. Mammen is now at NIH. But he took me on as his last patient the day before he left Hopkins. This all just happened. So I don’t have much more to report. When I do? I will.
Hi
I was finally diagnosed with IBM after over12months of MRI's and various other tests. It was finally further examination of the muscle biopsy which finall gave diagnosis. This was some 18 months ago now. I am just about to celebrate my 69th birthday. I noticed the strength in my legs and my left arm is now neither use nor ornament. because my left had has very little grip. Do you have any problems with your swallowing. It is something I really struggle but as I understand it not a lot of sufferers have this problem. If you do and have you any suggestions for a varied diet I would like to hear.
Good morning, I was diagnosed in 2003 with polymyositis and now is it IBM. I have done very well living with IBM until I had pneumonia. Then things started going down hill just a little faster. My doctor said the methotrexate has helped me the most. I will help you any way I can and my God Bless you!
Steve
Thanks! I've been wondering what other ailments can get in the way of this one. Being bed-ridden can't be good. My doctor told me to STAY MOBILE and to also BE VERY CAREFUL. He said I'm more likely to hurt myself falling than anything else. I would imagine if you can't "stay mobile" due to illness then your muscles that are still good start losing ground.
I'll pitch in with thoughts and achievements too. It sounds like we're all on the same page here.
Luckily my swallowing is fine. Thank goodness. So I can't really speak to that. But the weakness thing is prevelant. I've had to stop DJaying because I can't pick up my gear. And when I do get it on my shoulder I can't walk more than a step before my legs start collapsing. It's surreal. I'm a 6'2" 270lb dude and now I can't lift a speaker. Booo!
Ms Lesley Keyte said:
Hi
I was finally diagnosed with IBM after over12months of MRI's and various other tests. It was finally further examination of the muscle biopsy which finall gave diagnosis. This was some 18 months ago now. I am just about to celebrate my 69th birthday. I noticed the strength in my legs and my left arm is now neither use nor ornament. because my left had has very little grip. Do you have any problems with your swallowing. It is something I really struggle but as I understand it not a lot of sufferers have this problem. If you do and have you any suggestions for a varied diet I would like to hear.
Hi Pdub!
While I have DM, not IBM - I share a lot of similarities with you and your diagnosis.
The initial progression of my disease was pretty slow, and progressed over about 5-10 years. By the time I was diagnosed (4 years ago at 29), my tissue was also one of the worst they had seen.
I used to be a hair stylist and left the field because I thought my body wasn't cut out for that kind of physical work - it wasn't until I was diagnosed that I learned that the weakness in my arms was out of my control.
It sounds like you have great doctors who really understand what you're going through. Hoping that you're feeling much more like your old self again soon!
Maren
Hi Pdub, I'm 73 this year and mentally very active - still working to keep my brain going even if the body is losing its strength. Yes it is a strange and seemingly unforgiving disease which for me was first noticeable when "climbing" little mountains in S. Korea. After about 5 years it was diagnosed by muscle biopsy and since then has slowly progressed. Need a stair lift now and assistance with walking (stick/Zimmer frame/someones arm) to stabilise me . I find my balance is fine but the muscles are not strong enough to correct even the smallest of "stumbles" hence the caution. On the plus side I have only fallen 4 times since diagnosis. Swallowing is also a problem which has crept up on me and I have had a Botox injection initially and then a couple of minor operations on my throat to help. I just have to be careful with what I eat and remember to sip water frequently to prevent a build up of food in the part of my throat where there is a restriction. Normally the restriction would not be an issue asones muscles would deal with moving the food down to where it is supposed to go!! If this is of interest then I don't mind further dialogue - if not maybe it could be of interest to others - a closing word on IBM and that is ADAPTION is the key word as regards maintaining as decent a lifestyle as possible...
Regards
Pads
Thanks! I'll be just fine. :-) People around here know me as the bounce-back-kid. Just another challenge. My friends have been fantastic with their gallows-humor and joking around with the situation. We're making it a fun experience. I'm doing everything I can....fishing trip in June, baseball games all summer a horse race tomorrow. My main goals are to stay mobile and be careful! Other than that I'm doing what I always do.
Your progression sounds exactly like mine. I always thought I was out of shape. DJ gear that I carried just fine 3 times a week started to get heavier and heavier. Very slowly. No pain.....I think that's why I never thought to look into it. I'm ridiculously healthy in general. It was when I started falling, about the 6th time, that my friends insisted I go to the doctor.
I keep using this word, but it's surreal. Confusing.
Maren Holzinger said:
Hi Pdub!
While I have DM, not IBM - I share a lot of similarities with you and your diagnosis.The initial progression of my disease was pretty slow, and progressed over about 5-10 years. By the time I was diagnosed (4 years ago at 29), my tissue was also one of the worst they had seen.
I used to be a hair stylist and left the field because I thought my body wasn't cut out for that kind of physical work - it wasn't until I was diagnosed that I learned that the weakness in my arms was out of my control.
It sounds like you have great doctors who really understand what you're going through. Hoping that you're feeling much more like your old self again soon!
Maren
Yeah. "Stay Mobile" was my doctor's last order. And be safe doing it. I'm open to discussing anything. I'm just learning though so it may be one sided for a bit.
I attended a cigar dinner and graduation party last night. All of my friends took good care of me. There are a lot of shoulders and elbows in my life all of a sudden! Hah!
Pads said:
Hi Pdub, I'm 73 this year and mentally very active - still working to keep my brain going even if the body is losing its strength. Yes it is a strange and seemingly unforgiving disease which for me was first noticeable when "climbing" little mountains in S. Korea. After about 5 years it was diagnosed by muscle biopsy and since then has slowly progressed. Need a stair lift now and assistance with walking (stick/Zimmer frame/someones arm) to stabilise me . I find my balance is fine but the muscles are not strong enough to correct even the smallest of "stumbles" hence the caution. On the plus side I have only fallen 4 times since diagnosis. Swallowing is also a problem which has crept up on me and I have had a Botox injection initially and then a couple of minor operations on my throat to help. I just have to be careful with what I eat and remember to sip water frequently to prevent a build up of food in the part of my throat where there is a restriction. Normally the restriction would not be an issue asones muscles would deal with moving the food down to where it is supposed to go!! If this is of interest then I don't mind further dialogue - if not maybe it could be of interest to others - a closing word on IBM and that is ADAPTION is the key word as regards maintaining as decent a lifestyle as possible...
Regards
Pads
Hi to you,
I am a newbie too and only just been diagnosed (after 14 years). I would like to say hi to everybody from the UK.
Hello Caroline! :-)
Caroline Payne said:
Hi to you,
I am a newbie too and only just been diagnosed (after 14 years). I would like to say hi to everybody from the UK.
I was wondering if anybody could answer a question for me. I had a brother who died of Spinal Muscular Atrophy type 1 as a baby (although he died in 1955 and no diagnostic tests were available in those days). Now I have been diagnosed with IBM and as these are both classed as a Muscular Dystrophy disease whether there is some connection. My consultant in nuerology said that he thinks the SMA was "a red herring" and I do not have this disease. I find it very strange that SMA is a rare disease as is IBM yet there is no connection? Anybody know what questions (if any) I should be asking my doctors?
Hi Caroline,
I would also be a little alarmed at the similarities. Many doctors have assured me that myositis is not hereditary, however many other connective tissue diseases are, especially in the MS category.
I suppose I would be most concerned if there were other members in the family with symptoms, or if you were planning of having a baby. If you are super curious, maybe speaking with a geneticist would help to ease your mind.
Best, M
There certainly are some autoimmune problems in our family. I have a twin sister and she has sjogrens syndrome and we both have autoimmune thyroid disease and our mother had a suspected SLE although by the time she passed away doctors said there was so many things going on with her they couldn't give a firm diagnosis. Although looking back she was very similar to me around my age, unable to get up from a sitting position without using her hands, had dodgy knees like me that kept giving way, never seemed to have any energy to do anything (I can never remember her going out for an evening after she was about 45 ish) and at the end was unable to lift her arms to feed herself. She was told in her 40's that she had rheumatoid arthritis but at the end the doctors told her she definitely didn't have this but was unsure exactly what she was suffering from but suggested SLE. I still have not had mine confirmed as yet but I have been having trouble climbing stairs for quite a few years (at least 15) I am 56 now. I have been experiencing stiffness in my legs for about as long, I am OK when I get going but if I was to sit still for 5 minutues my legs stiffen up and I have to waddle to get going, this is worse as the day goes on. I have had an EMG test, my CK levels are elevated, an mri shows some atrophy in my thigh muscles and my muscle biopsy shows inflammation. My muscle biopsy was sent off to another large hospital for a professor of neuropathology examination and it was him that suggested the disease. My consultant then had to examine me and my reflexes in my lower limbs are absent and the pink prick test was impaired. So my consultant suggests I have IBM but wants to speak to the professor again for further interpretation of the biopsy. He wrote there is a subtle relatively mild proximal myopathy based on my test results. Considering that I have had symptoms with stiffness and climbing stairs etc for a number of years would this not have progressed quicker than this?