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I don't want a muscle biopsy!


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#1 amberjolie

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Posted 06 July 2012 - 04:00 PM

Scared, scared, scared. My rheumatologist's secretary said my CK level was 1424 (supposed to be under 73), and that the doctor wanted to set me up with an MRI. Okay, that's fine, she told me about that.

But she said something about a full-thickness muscle biopsy, too. What? I understand that they're obviously checking for polymyositis or dermatomyositis, but I do NOT want a muscle biopsy.

Not only have I heard they hurt, but they leave a pretty big scar, right on your thigh. I've been through a lip biopsy (which I almost passed out or vomited during), a skin biopsy...haven't I had enough? And really, the treatment is either prednisone (which I also don't want - I have enough low self-esteem without having the weight gain that comes with prednisone), or methotrexate, which I'm on right now anyways.

So I'm going to be asking her - what's the point of a muscle biopsy? (Once she gets back from vacation in a week or so). I'm tempted to just say, things aren't THAT bad. And since I'm taking those medications anyway, does it matter if I have a formal diagnosis?

#2 Teatime

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Posted 07 July 2012 - 06:34 PM

I'm so sorry! I think I would ask the doctors those very questions. They're good ones! I hope you get the answers and info you need to make a good decision!

Julia

#3 stillriding

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Posted 08 July 2012 - 06:09 AM

Hi

I have had a liver and muscle biopsy and luckily avoided a heart biopsy! I won't even start on the number of MRIs, CT scans, ultra sounds (my fav), blood tests... , etc. I think I am lucky too.

The liver biopsy I decided was necessary to determine the level of trouble my liver was in. I had mild pain and recovered quickly.

The muscle biopsy I felt was not crucial for diagnosis. I was started on very high dose prednisone before the pathology reports had even come back and I could not even get hold of the results until 6 weeks later. By then I was well into 50 mg prednisone a day and building up my Methotrexate dose. My CK was in the 4000s (no this is not a typo), I could walk fine, however I had lost all my muscle mass though and could not pick up the kids. A year later I have a diagnosis of possible polymyositis? Or dermatomyositis? No-one really is too fussed on that point.

After the muscle biopsy I was in a lot of pain and it affected my recovery dramatically. I have an ugly scar on my left thigh — even though I begged for them to go higher where it could not be seen.

Sorry my bad experience does not need to be yours, however, I went into the hospital being able to walk and get myself to the toilet and left 2 weeks later in a wheelchair needing help!
Be absolutely certain that you MUST have this test for their diagnosis. Yes, I understand that they want to be certain before they out you on prednisone, however, the gains from the test did not outweigh the invasive and the pain. Scars I can live with. Ask - what will this test show? What will this test not show? Be absolutely certain you know why they are doing it.

A year later I have just had my first reading of CK lower than 200 and I am able to live a simpler but almost normal life. I sleep a lot more and I refuse to let any forms of stress enter my life!

However, I have a nice belly from the cortisol and obviously the scars. I also have osteopenia due to the prednisone leeching the calcium out of my body. I would take the weight gain any day over all the other possible side effects!

I also went to a psychologist once a month during my initial treatment and it helped a lot to talk about everything and especially helped me see the positives out of all of this. This was great for my self esteem and I don't mind people asking if I'm pregnant again! I usually laugh and say, "No way, the first 2 nearly killed me!".

Good luck, lose the fear and start asking questions when you can. Get second opinions. And worst case - I hope you have a quick recovery.

My ride is not over - I'm riding the winter through with few white blood cells due to the Mex working a little too well! And there was that movie I wanted to see....

#4 Shelley Ensz

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Posted 09 July 2012 - 11:46 AM

Hi Amberjolie,

You have a good question about a muscle biopsy. And in my personal opinion, Still Riding had a good answer from her own experience. I have gracefully declined the opportunity to have many tests. What I want to know is, who is the test going to benefit (me or the doctor?), and is it absolutely crucial to my treatment or survival? If the answers are necessary, is there another, less invasive, way to go about finding the answer?

It is perfectly okay to get a second opinion before having an invasive test, too. I even refuse to have x-rays or scans taken again, if I've had them at another facility or recently enough to still be useful, there is no sense in exposing myself to extra radiation. Usually it is just easier for the doctor to order duplicate tests than to have the scans tracked down and transferred.

A muscle biopsy is very invasive. You have every right to really question it before deciding whether or not it is absolutely essential to your health and well-being.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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#5 judyt

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Posted 10 July 2012 - 04:01 AM

Hi All,

This is really interesting. I have quite severe muscle weakness in my thighs and these days I can hardly get up off the floor, when I do have to get down that low I have to get myself a chair or some other steady support to climb back up on. I have been wondering about asking for investigation but have more or less decided to live with my limitations. Somebody else will just have to get down to floor level for me if I have to look in the bottom of a cupboard.

As far as a Liver Biopsy is concerned,I have been advised to NEVER say yes to that suggestion. It is just too dangerous. Too many people have died after this procedure. My Rheumatologist gave me this advice years ago and I know a neighbouring family who lost their mother through liver biopsy.

I have non-alcoholic Chirrosis and once again until it gives me more trouble I will just have to live with it.

Warm Hugs
JudyT

#6 Jeannie McClelland

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Posted 10 July 2012 - 08:21 AM

I'm with everyone else on this subject. We always say that we must be our own best advocates but I hadn't quite realized how vitally important that really is until this year. Don't ever let anyone bully you into a test or procedure you don't clearly need or understand. And, on the other hand, be demanding when doctors are dragging their feet. Mine were in wait and see mode regarding the swallow until I said very clearly that I would not be agreeing to any further tests or treatments that weren't aimed aggressively at remedying my swallowing issues. Wait 8 months to see if the function would return on its own? I don't think so!
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#7 Amanda Thorpe

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Posted 12 July 2012 - 01:25 PM

Hello Jeannie

If doctors had to live with "it" I.e. no swallow for 8 months, their attitude would be very different for sure. Sometimes they have such a disconnect it's scary!

Take care.
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#8 amberjolie

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Posted 12 July 2012 - 05:39 PM

Not feeling quite so bad today. I heard back from my old rheumatologist (the one that's retiring) about an appointment with a neuromuscular specialist that he referred me to a few months ago when my CK was at 665. They said it was for an EMG (yuck I hate those!) and a possible muscle biopsy.

I spoke with the receptionist, and she indicated that it can really show a lot of important things, like whether it's vasculitis causing this, or a muscular issue itself, and that treatment would depend on what it was.

Then I spoke with the receptionist of the neuromuscular specialist, and she said the biopsy there is done with a needle, and just a tiny incision (one stitch) is required. And that everything is frozen. I had heard somewhere that muscle doesn't freeze, but she said it does. It's bone that doesn't freeze.

She also said it isn't 100% certain he would do the biopsy, that it would depend on what the EMG showed. And that I didn't have to do it if I didn't really want to, since they need a consent form signed before they are allowed to do it, and I could always refuse.

So I feel better about it. I'll allow him to do the EMG, even though I didn't have a good time with the last one (maybe he'll be better?), and then see what he says before deciding on the biopsy. Maybe I won't even have to make that decision.

My new rheumatologist is still on vacation, so I'll have to let her know about this appointment next week.

#9 Joelf

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Posted 12 July 2012 - 10:59 PM

Hi Amberjolie,

It's good that you've been able to speak with the receptionist of the neuromuscular specialist and that if you do decide to have the biopsy then perhaps you won't be quite so worried about it. I hope that the EMG will show up the problem and that you won't have to go through with the muscle biopsy after all.

Kind regards,

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