Something crazy happened around September 2016. My wife noticed on our walks that I was completely and inappropriately out of breath. She asked me if I was okay and told me to go see our family practice doctor. That was the beginning of this nightmare.
So I promptly ignored her good advice and went on with life. I grew up in an environment where you did not go to the doctor unless you were dying or needed a limb re-sewn on. Then in October, just one month later, I had the carpet cleaners over. They did the carpets etc. and two days later I broke out with what I thought was the mother of all rashes. I had it on my scalp, eyebrows, ears, hands, elbows, knees, back, torso it was everywhere, itchy and painful. I of course went to see a Dermatologist and we both concurred that it was likely to some allergic reaction to the carpet cleaners. He gave me some creams, etc. and sent me on my way.
That wasn’t the end of it. It’s hard to pinpoint exactly but I think it was within a month of this that I started to notice that I was exhausted, wore out, and had wide spread weakness and soreness across my body. I could hardly get off the floor. The creams were not alleviating the rash and I noticed that I was starting to lose weight. I was also experiencing wide spread cramping; getting cramps in places I didn’t know I could.
I went to my family practice doctor and followed up with the dermatologist. They both started, without talking to each other, looking at some kind of autoimmune response in my body. Lab tests, blood work, skin biopsy, short burst of antibiotics coupled with short burst of high dose prednisone and time and both concurred that it may be Dermatomyositis (DM); interestingly enough they both called me on the same day and told me that news. Both recommended I go see a Rheumatologist and referred me. I went.
Let’s see here are the list of tests that have been performed that I can think of off the top of my head.
- Muscle biopsy right upper leg.
- EMG left leg.
- Chest X-Ray.
- PFT (pulmonary test).
- CT Scan.
- Numerous blood tests.
- Eye exam (recorded baseline in anticipation of potential future use of Plaquenil) You need to do this if you plan on taking the medication; long term usage can result in potentially sever eye issues.
- Neurology consult.
Many more tests to come in the future.
After the muscle biopsy and EMG my Rheumatologist put me on 80 mg a day of prednisone. Besides acquiring most of the side effects (no weight gain weirdly) it did have the intended effect of crushing my CK score. Two weeks of 80, dropped to a month of 60, I anticipate that will be dropping again to 40 or so. I guess it takes some time to get off of it. I can tell you it’s making me a twitchy, sweaty, scatterbrained, insanely angry (mental turrets), insomniac person but hey, if it can throw this thing into remission even better.
Probably one of the lab tests that you all would be familiar with is CK. I progressed from 231 to 359, to 873 (start 80mg prednisone), to 440, to recently back to normal 79. It was caught “early” and hit with prednisone but I am getting ahead of myself.
Rash is no longer roaring and has come down some but it is still there with continuous breakouts of the dreaded Gottron’s Papules on my fingers which sting, are sore, and painful. I also have these tiny little cuts all over my fingers (tips and sides) that will not heal. Makes it hard to type etc. I think those are left over from the major rash breakout.
The good news is the Neurologist concurred with the current diagnosis of DM. It’s not something worse like ALS.
I still have the pulmonary doctor to see, still out of breath and both the XRay, PFT, and CT scans all showed something bad happening in that department. So we have that outstanding. Also, my family practice doctor wants me to get some cancer screenings which I am going to do.
The general good news is I feel that things are progressing in a positive direction finally. Lab work is looking good etc. I lost over 30 pounds since this started (unfortunately all muscle) I started walking again and promptly over did it; easy to forget that I need to build up. Needless to say I experienced cramping in every muscle on both legs for 1.5 miles but I had to get home.
I still feel at times that this is all in my head (see above comment about going to the doctors) of course that is silly since there is all kinds of physical proof. CK 873, LDH 920, Aldolase 8.5, AST 73, ALT 93 are not figments of my imagination and a huge rash that seems to localize over joints and in places that are fitting for DM cannot be “generated” for pity. I still struggle with the mental part of all of this.
Anyway, that’s my story. I Joined this site so that I could try and get a better idea of how this all progresses and to help and get help if needed. My story is pedestrian and sounds pretty common. I am stunned at how long it took for some people to be diagnosed. That scares me a little.
Thanks for reading and let me know if I can help out.
Peder
I don’t have Myositis, but I will tell you that it took 15 years and a lot of damage for the doctors to diagnose my Psoriatic Arthritis. Unfortunately for people with rare diseases and conditions, it often takes a long time to figure out, and before that happens, a lot of us think we are nuts and imagining it all. LOL