muscle autoimmune

[sosickofIC]

I've been diagnosed with a chronic bladder disorder called Interstitial cystitis, endometriosis, recent costochondritis(with no trauma or respiratory virus) and past episodes of SVT. About 5 years ago I began having bad muscle pain, joint pain, fatigue and weakness(sometimes not even having the strength to open a loose jar top). I was seen by a rhumatologist who ran blood panals. Negative ANA but my CPK levels were off the charts. She requested I have a muscle biopsy but I worried and decided to ignore things hoping they'd get better. We'll things have progressed. All my symptoms are even worse and now I'm getting more of these strange calcium deposits on my skin(like little hard balls under my skin in numerous locations) and suddenly have a fibro breast tumor. All of my symptoms seems so all over the place between the diagnosed and undiagnosed. I made an appt with this rhumatologist finally deciding I can't live this way but it's not until mid january. but every day I feel even more and more tired and can barely function. I work full time. Are they're any other types of doctors besides rhumatologists who handle these kinds of issues and are they"re any other tests besides a muscle biopsy that diagnose these kinds of things?

Thank you for your time

[sosickofIC]

Hi doctor,

Just an update as I'm back from the rhumatologist. My tests were normal except for a continued abnormality of high cpk. After consulting the pathologist and surgeon regarding a muscle biopsy its believed i have a combination of a metobolic myopothy and fibromyalgia. Because I've just had two surgeries one for my bladder and one for endometriosis we're going to begin treating it with nutrients for the metabolic issue and neurontin for the fibro and see how things are in a month instead of my having yet another procedure(not to mention if they biopsy my thigh but the problems in my arm, the test isnt reliable). But if I am not feeling better in a month I will opt for a the biopsy as to try and get a confirmed diagnosis.
So thats where we are at this point, and hoping the combination of neurontin and neutrient suppliments improve things...maybe I can get back to working out!

[John Irlam, DO, FASCP]

Thanks for the update Sosickof, looks like I've got some learning to do myself, I appreciate you educating me.  I'm happy to hear that you got an earlier appointment, let us all know what they said when you get a chance.
John

[sosickofIC]

Thank you very much for your reply.
I never really thought much about the calcium deposits popping up(other than a little embarassment when asked about what they were) but when doing research I came across symptoms of a muscle autoimmune problem(Myositis group of conditions) including those as the listed symptoms, and also including breast tumors. I had never put those things together with anything but seperate issues.
I did happen to get a sooner appointment for today with a rhumatologst. I'm very happy to get in sooner and start to get these problems looked into and hopefully taken care of.

I will keep you updated on what happens
Thank you very much

[John Irlam, DO, FASCP]

Hi Sosickof,
Well I'll start by saying that I'm very sorry for you having such a rough time, it sounds like you have a lot going on.  It sounds like a muscle biopsy would be a good idea in my opinion, especially with your elevated CPK.  This can help rule out a few kinds of autoimmune diseaes that can cause problems in the muscle in skin which are often associated with weakness.  I'm not sure how the calcium deposits fit into your picture.  Have you had a skin biopsy done?  If not that may be helpful in trying to figure out what's going on.  Do you mean fibroadenoma in your breast?  As far as I know a rheumatologist usually handles these symptoms but I'll ask around my hospital and see if anyone else ever works on them. Maybe you've already tried but you could always try another rheumatologist in your area if one is available and you'd like to see on sooner.  Also you could try calling the doctor's office and see if they happen to have any cancellations on a given day or maybe they could put you on a waiting list for if/when they do have unexpected openings in their schedule?  Just a thought.  Keep us all up on how things are going for you.
John