Anyone here have a muscle biopsy?

[MsWobbles]

Hi MSers and Limbolanders,

I am thrilled to have just seen an excellent physician who really listens, really observes, and really cares.  In addition he seems to be brilliant!!!  Hopefully, he can lead me to my diagnosis. During the physical he probed portions of my legs that were very tender/sensitive (something I had never felt or been aware of before).  I may turn out to be one of "Jerry's kids" after all but it may be something oddly called "inclusion body myositis"  which is just a progressive muscle-wasting crippler with no treatment options leading to a wheelchair, but it's not a death sentence like ALS.  Hey, I'm happy about that possibility!!

Anyway,after assessing my symptoms and seeing the muscle wasting in my forearms and shoulders, he has ordered a muscle biopsy (something I have long felt I needed). Has anyone here ever had a muscle biopsy?  If so, could you describe what it was like and if it lead to any diagnostic conclusions for you?  I'm a little nervous about the procedure itself since my last invasive medical procedure was that horrendous spinal tap snafu.

Please let me hear from you if you have had a muscle biopsy.  I suspect they aren't really done for MS diagnosing, but maybe in your workup on the road to your MS diagnosis you had one done to rule out other possibilities.    

Thanks!

WAF

[MsWobbles]

I don't know anything about the anesthesia that will be used.  Haven't met with the surgeon yet, but will soon.

Hey, torikat32, I am VERY worried about your symptoms.  They are significant!!  Please check your "profile page" on this website  (click your name in blue to get there - I didn't know how to get to my profile page for the longest time - being a complete technophobe).  I left a message for you on your profile page.

Hugs to you Torikat!

WAF

[MsWobbles]

Erin,

Thanks for the input. Yes, I'm thrilled with my new MD!  

Sorry about the residual scar on your leg. Sheesh!  That is a very long scar!! I didn't dream it could be 8 inches from a muscle biopsy!!  I had had a thyroid biopsy where they just pulled out cells with a large-bore needle (such fun without any anesthesia!) so I thought they'd just have to dig in (maybe a 1-inch opening or something) and cut out some muscle for my muscle biopsy.  I haven't met with the surgeon yet so I don't know which anesthesia will be used - but if it's anything like your muscle biopsy, I likely will want twilight. I will wanna be put out for sure!!  Mine will be of the leg too.

I agree with you about the spinal tap experience - for me it was horrendous (especially the week afterward and the blood patch).  But what was bad about your EEG?  I haven't had one.  Don't they just hook up some sensors to your scalp??  What did you find bad about your EEG??

I dread getting an inconclusive result (like I did with my thyroid biopsy). Your negative muscle biopsy result actually was very useful in your case because it helped them rule out conditions with symptoms similar to MS (like ALS etc.) and point you more toward MS.  So sometimes a negative result can turn into a positive thing!

Congrats on finally leaving Limboland!  I look forward to joining you there (on the outside) one day!!

WAF

[Erin0313]

Hi & congrats on finding a doctor that you are really happy with! That is a fantastic achievement.

I had a muscle biopsey years ago in NYC before my MS dx. It didn't hurt at all for them to do it but mine was in my leg and so since I didn't take time off of work to give it a rest I did have swelling and worse leg pain for a couple of weeks. My fault totally.

I think the spinal tap and the EEG were way worse.

I did end up with hypersensitivity on the outside of my left foot but it has improved over the years. The thing the ticked me off was I asked how big the scar would be (very superficial I know but I have tons of scars) and they said 3 or 4 inches. Well I have an 8 inch scar with little stich dots up the center of my calf and people still ask me what happened to your leg.

Good luck with your new doctor he sounds like a keeper!
Erin :)

Oh P.S. my results were negative - just part of the limboland journey :)

[torikat32]

In here in the little state Rhode Island . A few docs I have seen before have mentioned those dreaded Als but nothing more has become of it. I am just getting really tired of the well we know something is wrong with you but dont know what it is routine from neuro's last one told me here i will write a script for pot I said no thanks and found another neuro he is a kind older doctor hes out of Brigham and womens hospital in boston I see him in a satellite office. He has reassured me he will figure it all out. i am a bit skeptical cause I have heard those words before but so far he has done a good job. repeating some tests I have already done so he can rule things out himself instead of taking someone elses words for it. when are you having your biopsy done? local or general anathesia? soory spelling bad fingers numbb . keep in touch

Kat

[MsWobbles]

Dear Torikat,

Thanks so much for sharing about your muscle biopsy.  I have heard from some that their symptoms went into hyperdrive after a muscle biopsy.  Sounds like that may be happening to you too.  Don't buy that "you're much too young for this" nonsense!!  Your symptoms sound scary.  Have you been checked for a mitochondrial disease like inclusion body myositis?  ALS?  Forget the age-of-occurrence thing - it is a generalization that ain't true for everyone.  For instance, ALS usually strikes us older folke (in our 50s, 60s, or older) but it has appeared in 20-year-olds!!! Maybe even in teenagers!!!

I worry about the muscle biopsy being "inconclusive."  I heard those very words after suffering through a very painful thyroid biopsy done by a clumsy and inexperienced student  (without any local or topical anesthetic whatsoever) at an university.

Keep in touch!!  What state are you in?

Hugs and prayers for you!!

WAF

[MsWobbles]

Hi, Red,

Yes, I do feel it is a turning point for me.  I'd say the biopsy will take place within a few weeks' time.  Thanks for sharing the website - I'll take a look at it.

I just read your post about your stolen MS diagnosis!  Horrible!!  So sorry!

Feel better!!  You're in my thoughts and prayers!!

WAF

[RedFlame]

wow, that's a real turning point for you.  Firstly, having a doctor who listens is miraculous, and them having him/her begin other testing---great!

I haven't experienced any muscle or nerve biopsy so I don't know anything about it.  I have wondered though as I know people with any of the motor neuron diseases have that done.

I will be anxious to see what happens, do you know when this will happen

[torikat32]

Hi i had a muscle biopsy done in may and my results were inconclusive go figure. I do have small fiber neuropathy , I had terrible pains in my legs like someone was taking a ice pick and jamming it into my bones and they did a skin punch biopsy and thats how I got diagnosed with sfn. no underlying cause for it as of now but docs are testing for lupus that could cause the neuropathy. the muscle biopsy wasnt to bad i chose to be knocked out a small incision  in the thigh area and it was done in less than half hour. some pain afterwards but other than that piece of cake. I really wish I got some answers I went to a muscle specialist last week and had that emg tests done again essentilly normal sfn doesnt show up on these tests but legs and arms are weaking and now numb from waist down and fingers are starting to go he did state however that i am much to young to have this type of neuropathy and need to find out why so hopefully when i go to the rheumy in Oct i may finally get out of a 6 yr limboland.  if you have any more questions I will try to help ou out the best I can but good luck and keep us posted .
Kat

[MsWobbles]

Hey, Audrey,

Thanks so much for your response!!  I didn't know it was a mitochondrial disease. I don't know anything about mitochondrial disease.  All I knew was that it was was of the many diseases under the umbrella heading of "muscular dystrophy" which MDA lists under the heading of "inflammatory myopathy."  Thanks so much for the leads - I'll check them out!!

WAF

[Audrey_M]

WAF

You might want to check with joyful50 on this. She started a forum on Mitochondrial Disease:


http://www.medhelp.org/forums/Mitochondrial-Disorders/show/890?camp=msc&personal_page_id=1715704

It's my understanding that muscle biopsies a common in diagnosing Mitochondrial Disease.

Audreyhttp://www.medhelp.org/posts/Multiple-Sclerosis/Anyone-here-have-a-muscle-biopsy/show/1339685#