As I've talked about over the last few years I've been dealing with MC (CC) and Crohn's disease which has done pretty well since the surgery. Actually in just a few weeks is the 3 year anniversary from the Dx of these conditions. To treat the MC and Crohns I have been taking Imuran which is an immune suppressant which mildly supresses the immune response calming the disease process for the MC and Crohns, and so far has worked pretty well.
Since that time and for the last 3 years I have done fairly well with my diet and have been eating a 100% GF,DF SF, and have gotten quite used to cooking my own meals. Lately I have adopted a low carb diet to help deal with some of the side effects of one of the meds I'm on and that diet has been great. I'll actually write up a separate post about how that's going.
Late last summer I was diagnosed with Anklyosing Spondylitis (AS), spinal stenosis, degenerative disk disease, facet joint hypertrophy and osteoarthritis....which besides using up the whole alphabet to spell them, basically means that my spine wants to fuse itself together as the AS is an autoimmune disease affecting the bone and for the rest of it, it means my back just hurts a lot.
To treat the back issues I have initially been getting epidural steroid injections with a fairly high dose of steroids (equivelqnt to about 200mg of prednisone). The medicine they use is called Kenalog, which is an injectable "time released" steroid powdered suspension. While it works well for a while and has helped the back and leg pain somewhat, it has not worked exactly as intended. For whatever reason I'm one of the 17% that seems to absorb the whole dose in just a handful of days....I'll skip all of the details but it's not fun, a lot of mood swings and a lot of weight gain (more about this in a future post about a diet) I have had 5 of these procedures now and hopefully can start slowing down some.
Now for the fun part....
Just yesterday I was diagnosed with another autoimmune disease called Myasthenia Gravis (MG). MG is a muscular dystrophy disease that is a result of the immune system producing antibodies that block the signals from the brain to the muscles. What makes this dangerous is that includes things like breathing, over the years I've kind of grown fond of that habit
Just a handful of years ago MG had a mortality rate between 30 to 40%. Thanks to new meds this number is now around 10%The good news is I'm in the very early days of the disease and fortunately am already taking Imuran which is one of 3 main drugs they prescribe for this. In addition to the Imuran, depending on the disease activity, I will most likely be taking modest doses of prednisone and Imuran for the long term and a med called Mestinon which helps the transmission of the nerve impulses to the muscle. For most with MG, these meds become daily companions and depending on the course of their disease can do quite well.
Within about week after some blood test results come back, I will most likely have a CT or MRI scan of the chest to look at the thymus gland. The thymus gland while used while we are infants to develop our immune systems, later in life is supposed to go dormant, but in MG it plays a big role in confusing the immune system causing it to run amok. In adults the gland is located right near the heart in the chest cavity. If my blood work numbers are high enough and especially if the gland looks abnormal I will most likely be encouraged to have that removed. The 'fun' part, is that the thymus is in the chest cavity and basically that means opening the chest cavity like during open heart surgery.
that would be an interesting scar to have to keep explaining. After removal though many see a significant improvement in their symptoms. I'll keep you up to date if this becomes a reality in the next few months.The normal symptoms of this condition are problems with double vision, eye focus, leg, hip, hand and arm strength. So far I have experienced these symptoms but during a test of the medicine at the doctors office, I saw very quick relief. What I have noticed is that my legs get very weak by the end of day, to the point I can't move my leg up to tie my shoe and I'm tending to stumble a lot. Along with that I have had issues with my voice going out as that's related to the throat muscles....some have called that a real blessing!!
I can't understand why....The other symptoms that are common are facial muscle issues making it hard to smile and problems swollowing and finally problems breathing requiring hospitalization. I'm pretty confident that by getting on top of this early, I should be able to avoid the more problematic symptoms. The key is to be aggressive with good nutrition and the meds as soon as you can. Like multiple sclerosis once you have degraded its hard to get back to where you once were.
What I hope is that these symptoms improve and even go into remission, whats likely is that I will have good times and not so good times and that I need to learn how to pace myself, save my energies and listen to my body. For me its just another part of my journey and I just need to accept it as that. For those of you interested I found a really good website with all sorts of information on this topic. Here is a link to that site where several people who deal with this have shared their experiences....caution now these are Aussies
you'll have to read their personal accounts with an accent http://www.myasthenia.org.au/html/experiences.htm
Now given the run of 'luck' I have had these past few years I could easily get into a depressed, angry or self pitty mode, and I have done that a bit, but decided to choose what attitude I wanted to have.
What has helped tremendously these past months are some really wonderful and very patient friends. I would like to personally extend a very special thank you to Gabes and Polly for your friendship, council and simply putting up with me these last few months, it has made all of the difference....Thank you.
Of course I would be remiss in not saying how much each one of you have helped these past few years. Your posts, notes of encouragement reading about your journeys have meant the world to me.
Thanks to Tex for providing such a wonderful place as this, we all are truly fortunate.
. . . . progress, not perfection. . . .
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