Non Specific Myopathy

Posted by jlw @jlw, Feb 9, 2020

I will summarize as quickly as possible. in 2018 I started with severe muscle type pain above and below my right knee. Muscles sore to touch and I could hardly walk. I was a normal, full time working RN prior to this with no major health issues other than HTN. I saw my primary October 15 2018. We thought it was statin induced. Steroids and rest. It worsened to severe pain in both legs, unable to stand or walk except very short periods. Severe weakness and pain to upper and lower legs. Saw rheumatologist in Springfield Illinois, Nov 2018. They passed me to Neuro there. Had blood tests and and EMG. Neuro said rheum and passed me back. Muscle biopsy also done.
Long story short, my doctor pursued another opinion at Washington University in St Louis, neuromuscular. Repeat EMG. MRI, which I was told showed fascia inflammation. Skin biopsy done. Didn’t show anything, as I figured it wouldn’t but have to jump through the hoops of hell. Initial EMG in Springfield MD said it appeared to be a myositis. I have muscle biopsy results from Springfield,
In St Louis they could not figure out a cause. Passed me to rheumatology. They recommended a fascia biopsy or referral to Mayo. Saw Mayo neuro November 4. Emg repeat positive for muscle issue. Repeat muscle biopsy. All they can come up with is myopathy. My primary has started me back on steroids, which were not the most effective to begin with. Immunosuppressive oral option if steroids don’t work well. We already know they don’t, as I have been on them quite a bit over the past 17 months. The side effects get so severe I have to stop.
Needless to say, I can no linger work. With steroids I am able to get up and ambulate a little, prior to steroids I could barely get up and had to use walker, but very poorly. I have seen so many physicians and really thought Mayo would get me an answer. I’m tired of going specialist to specialist and have to be honest...our insurance does not cover well and I owe over $14,000 out of my own pocket, not counting bills I have already paid. My primary offered me another autoimmune specialty but if Mayo can’t figure it out, I just don’t have the energy to start over again. I absolutely will NOT have another EMG nor muscle biopsy ever. Yes, I stand firm on those. 3 EMG’s and 3 muscle biopsy sites are more than anyone should have to endure.
I have sent an email to see why a Rheumatology specialty area Mayo can’t review my case as well. I deserve answers and have done every horrible thing requested of me. Thinking of sending a message to my “Mayo medical team” but that tend to just be, basically, ignored.
Opinions because I am literally at my wits end.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Becky, Volunteer Mentor | @becsbuddy | Feb 10, 2020

@jlw. Good morning and welcome to MayoClinicConnect. I’m really glad you found us and hope we can help you. You sound frustrated and hopeless, just like I did 2 years ago. It took almost 9 months for me to get a diagnosis. I was begging for an MRI and they finally listened. I was finally diagnosed with a chronic lymphocytic inflammation on my brain. It sounds like you’ve done everything you can think of, but, then, a good nurse would.
I went to google scholar to see what info it might have. They have way to much to post here so you might want to check it out yourself.
You might also see the autoimmune specialist your PCP mentioned. Take all the test results with you and even see if the doctor can access the slides from pathology. There are so many new autoimmune diseases that doctors are having trouble keeping up. And maybe another member will see your post and respond. Please stay in touch and I’ll keep looking.

jlw | @jlw | Feb 10, 2020

With all due respect, I have seen a rheumatologist, to neurologist, to neuromuscular, to another rheumatologist, to a mayo neurologist and another surgeon. I have had 3 EMG’s in less than 1 year, I have had an MRI, I have had 3 muscle biopsies, a skin biopsy and more blood tests than any one person should. I started in Springfield Illinois, to St Louis Missouri and then to Mayo in Rochester. From my experience Mayo has always been the cream of the crop so starting over again, in St Louis, again? I know I have no patience, but seriously? What is an answer? I don’t know, but constantly flitting from doctor to doctor sure hasn’t worked for me so to continue to do the same thing tends to yield the same result.

Becky, Volunteer Mentor | @becsbuddy | Feb 10, 2020

@jlw. I know how hard it is and patience goes right out the window! Finding the right doctor who is willing to investigate and just waiting is so difficult. I’m also a nurse and know that waiting is the hardest thing ever. I an only suggest that you continue advocating for yourself. Have any doctors suggested what can be done to help symptom-wise? I was started on intravenous steroids for 5 days, then switched to oral. It’s referred to as ‘pulse’ steroids. I’m going to see what other members have talked about myositis or non specific myositis. Please stay in touch, we’re trying to help, but I know that it’s hard for you

Becky, Volunteer Mentor | @becsbuddy | Feb 10, 2020

In reply to @jlw "With all due respect, I have seen a rheumatologist, to neurologist, to neuromuscular, to another rheumatologist,..." + (show)

@jlw
https://connect.mayoclinic.org/discussion/distal-myopathy/?pg=1#comment-39510 The discussion on this page may be of some interest. They talk about many types of myopathy

jlw | @jlw | Feb 10, 2020

In reply to @becsbuddy "@jlw. I know how hard it is and patience goes right out the window! Finding the..." + (show)

Thank you. I get so frustrated. I literally was normal working person with hardly any issues. Then all of a sudden it was taken from me and we still don’t know exactly why. We started me back on 60mg of Prednisone po and I go back to my doctor in a month. I know they help. I can walk without a walker. Still limited but a little more mobile and less pain. Off and on I have been on oral pain medicine, but I worry too much about addiction and they, truthfully, do not help the pain that much. Lyrica helped some, but leg swelling was an issue. I keep pushing and am lucky I do have a caring PMD. I am trying so hard to not stay frustrated, but I went to Mayo because they are experts. Expensive and painful re-testing and we are right where I started. 🙁

Becky, Volunteer Mentor | @becsbuddy | Feb 11, 2020

In reply to @jlw "Thank you. I get so frustrated. I literally was normal working person with hardly any issues...." + (show)

@jlw. You said you’ve restarted 60mgs of prednisone daily. Ask your doctor now for a script for bisphosphonates to keep your bones healthy! I didn’t know of the importance and I now have pretty bad osteoporosis. Just what I needed! There are pills, IVmeds and injections for osteoporosis meds. Can you call today and prevent another problem?

jlw | @jlw | Feb 11, 2020

He already covered that. Thanks so much:)

jlw | @jlw | Feb 13, 2020

In reply to @becsbuddy "@jlw https://connect.mayoclinic.org/discussion/distal-myopathy/?pg=1#comment-39510 The discussion on this page may be of some interest. They talk about many..." + (show)

We do know it isn’t DM2. That was a concern because of a different type of issue on my paternal grandmothers side. Mayo did the genetic testing for that. Thanks for this info!