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Open Muscle Biopsy

Posted , 9 users are following.

holly28923
holly28923

Help, I'm in a panic!  My Rheumie is questioning the PMR diagnosis, due to the level of muscle pain, cramping, weakness and tearing I have been experiencing.  She referred me to a neurologist who wantst to perform a muscle biopsy.  It turns out that this hospital only performs Open Muscle Biopsy and they want to do the two hour procedure under local anesthetic.  And by the way, sorry lidocaine can't reach the very inner layers of the muscle and your will just have to deal with that part of the procedure. They will be making a 2-3 inch incission and taking out 3 pencil erasers size chunks of muscle during the two hours.  

Doesn't this seem excessive?  Why do an open biopsy when a core biopsy is so much less invassive? Has anyone had this procedure done?  Did it even show any results that made it worth it?

0 likes, 12 replies

12 Replies

  • judytal
    judytal holly28923

    Posted

    I refused an EMG because neurologist suggested I had some neuromuscular disease. She then offered a blood test... I had that and it was negative.

    My PMR diagnosis is questioned because my inflammatory marks were normal but clinically I had all the symptoms. I am taking 2 mg of prednisone every day. That makes the pain subside but the weakness I keep getting inconsistently... plus shortness of breath every day. Been to pulmonologist and cardiologist... they found nothing!! Very frustrated as this ( PMR ) has totally changed my life!!!

    Good luck to you judy

    • lyndsay250258
      lyndsay250258 judytal

      Posted

      I too have shortness of breath. As my family seem to have hereditary heart problems I assumed it was this. However, like you, all tests came back negative. My practice nurse now thinks it's asthma, so I'm now using inhalers. Maybe there is a link to the Prednisone. Thank you for mentioning it and making me think twice.

    • holly28923
      holly28923 judytal

      Posted

      I had elevated CRP and Sed rate prior to steroids.  Not sure about CPK. I don't think that I have had that blood test.

    • EileenH
      EileenH holly28923

      Posted

      The CPK is specifically to look for muscle damage due to other causes - it is never raised in "just" PMR but there are a couple of things that present very like PMR but where the CPK is raised.

  • Diana112
    Diana112 holly28923

    Posted

    I assume you are taking prednisolone? You do not say how much or for how long..Muscle pain with PMR is crippling and 15mg to 20 mg pred on average will bring the inflammation causing the pain under control.  A known side effect of pred is muscle weakness. I suppose it is possible that if you overdo things a muscle tear might result.  Like you I feel an open muscle biopsy is excessive.  I hope you get things sorted as PMR is more than enough to deal with.
    • holly28923
      holly28923 Diana112

      Posted

      I started at 15mg about 15 months ago.  My current dose is 7mg.  I have been on a very slow taper.  Still have some pretty bad muscle pain to deal with, but I can walk without any great difficulty.  That was getting to be a problem prior to prednisone.
  • stella-dk
    stella-dk holly28923

    Posted

    I would say no thanks if I were you. You don´t have to do everything a doctor suggest. Some times they suggest a procedure so that the young doctors have someone to practice on.

  • EileenH
    EileenH holly28923

    Posted

    Have you had other blood tests done - such as CPK? Have they justified their desire to do a muscle biopsy of this sort? I certainly would be reluctant to have an open one done without good reason. Can you not be referred to somewhere that does needle biopsies? 

    Where are you? In the UK or the uS?

    • holly28923
      holly28923 EileenH

      Posted

      I'm going back to my Rheumatologist to see if she has another hospital/doctor she can refer me to.  The current hospital is our region's largest trauma center with the largest neurology unit.  I'm in the states, if you can't tell by my writing.  I do enjoy seeing the very  British terms used by your fellow UKers.   I have visited the UK twice and really enjoyed the country and the people.  I also apologize for Trump.  I did not vot for him, just like the majority of the American people.  Sitting in dismay and disgust.  Gets your mind off the PMR though.      

    • EileenH
      EileenH holly28923

      Posted

      There are a lot of things I'd rather to take my mind off Trump. And Brexit - which affects me a lot as I don't live in the UK at present. cryrolleyes  

      We certainly live in interesting times...

      I didn't notice how you spelt anaesthetic!  That would have told me.

      The more I think about it - the more I'd say thanks but no thanks.

      I had problems with the local teaching hospital being unable to dx appendicitis in a 7 year old after a week as an in-patient - it took the district hospital in the opposite direction a couple of hours! If it had been left she'd have been a VERY sick bunny - the appendix was about to perforate from the inside.

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