I'm getting a muscle biopsy tomorrow. I'm a little nervous, but not too much.

I've had Myasthenia Gravis for almost 2 years. All my test results were negative, except my body has the perfect response to Mestinon. I am taking 180 mg 4 X's per day right now and it helps a lot. However, I still have some issues and get flare ups. My doctor believes I have a subclassification of MG called Slow Channel Syndrome. We're doing to biopsy to verify or modify that finding. In truth, I am actually looking forward to the procedure because I feel it will bring some answers and provide direction for future treatement.

Has anyone else had the muscle biopsy? I read some things online and it seems unpleasant, but do-able. In June I broke both the bones in my left forearm and that really hurt...that's my new level of tolerance comparison tool...I figure this procedure won't hurt more than breaking my arm, so I'll be fine.

How were you after the procedure in terms of you MG? Did your body produce a response to the anesthetic or anything like that? It's local, so I don't imagine there will be much kick back. I know I had a big reaction to the anasthetia when I broke my arm (not pleasant), but as you see I'm still alive. I am wondering if I'll be able to go back to work the next day or will I need to rest? Any suggestions? Knowing me I'll end up taking it easy regardless, but I would like to hear your feedback.

I will be very interested in hearing all about how the biopsy goes and this slow channel version. I found the piece of research below.

http://cat.inist.fr/?aModele=afficheN&cpsidt=2412663

It says that the biopsy was done on an intercostal muscle (breathing muscles). Where is your biopsy gonna be? This neuro wants to do my left thigh. I dont really want it there as that leg already has chronic problems with spasming. The psoaz goes bonkers.

My concern on the biopsy is healing. I have heard it can, at times, be a rough piece after. I have a couple stories of folks that really regreted it that healed very poorly. I feel tho that as long as my MD that does acupuncture with me is working on me around the proceedure I'll be OK. That and my vit D is better from summer so I plan to get it done by the end of next month. I guess the point is that I think a person wants to be mindful of doing whatever it is that helps you heal when you go thru this.

Annie59

Good Luck with biopsy. Sure it will be fine. I've not had one - but someone else on here did a while back.

She said the anxiety beforehand was worse than the recovery or the healing!!

Hope it works out that way for you.

Sue

The biopsy went great! I was nervous because I thought I had to be awake during the procedure, but that was not the case. They gave me some happy medication through my IV and then rolled me into the surgery room, then they gave me something to put me under, next thing I new I was being wheeled out and the procedure was over. The doc was able to get a significant chunk out of my left thigh (top). And it is cool how he stitched it up...he did stitches on the inside and then put special surgery glue on the top layer. That is supposed to leave less of a scare. I have a horizonal cut about 2 or 3 inches on my thigh. I don't mind really. It doesn't look too bad.

The pain is decent. When I was in recovery I barely felt a thing because my leg was still numbed. It just felt like a scratch. Then I went home and the numbness wore off, so I've been taking some pain killer as needed. It basically feels like someone punched me in my thigh. I am able to walk and am back at work today. I am sure I'll only make it half a day because I am fatigued, but wanted to try and come in. I cannot really life it...when I try to then I feel the muscle that was biopsied. So, I'm just not doing that fancy move for a couple of days. My roommate drove me to work (wanted to be safe). The doctor said I can expect to see a lot of brusing, which makes sense. I already have a big purple bruse under the scare. It's in the shape of a square, so I imagine that is where they took the muscle.

In all honesty, it's not that bad. I'm managing any pain with medication for right now, but I think I'll need it only for a couple of days. It's well worth the effort to get some definate results.

I worried a little bit about it coming back negative as well, but then decided not to worry. They send the specimen to a pathology lab and they find out what's wrong. So, either it is or isn't. If it isn't, then I expect they'll tell me what it really is...and if everything comes back negative, then my issue must be more neurological than muscular. I know there is something wrong and one way or another me and my doctors are going to get to the bottom of it.

I wish you well on your journey and would like to hear how your biopsy goes.

Thanks for the positive vibes. It went great.

I am so glad you have the doctors you need to make sure the answer is found. I was glad to hear how well they took care of you around the surgery. I got the impression that I wouldnt be 'out'. This would certainly be less stressful for me. I will be sure this is discussed.

I am sure it helps that you are so positive. I admit the recent months of getting so much worse and feeling unheard by the neuro I have had I have lost faith and certainly any trust in her. The good news tho is that I am seeing this older neuromuscle doc Nov 9th and my daughter and I have discussed the value of her overseeing the biopsy. After the neuro ignored the positive diagnosis of MG in my eyes we were stunned. That was in May. We thought we were finally gonna get strongly confirmed so the stronger treatments could start not just mestinon.

About results, I have found they can be less than obvious. Here is one such example:
http://www.dailystrength.org/c/Myast...-muscle-biopsy
Note the 3rd post down on the page.

I look forward to hearing how you progess with healing and results. I hope is comes quickly.

Annie59

Mvoyvodich, I'm glad the biopsy went well. I have to be honest, though, I'm not sure why they did a regular biopsy when the specialized biopsy of the intercostal muscles or the elbow to shoulder are done. Those biopsies are more dangerous and are only done at two locations in the U.S.: Mayo Clinic at Rochester, MN and at UC Davis in CA. Those two locations are also the only two where you can get the genetic blood tests done for any of the congenital myasthenic syndromes.

Slow Channel Syndrome is where the muscle gets too much acetylcholine, which is the "opposite" of MG. The "channel" is open for too long, which is why they call it "slow." Therefore, Mestinon would not work. Instead they use Quinidine.

Were you on pain meds before the biopsy? Did they tell you to stop any meds? Have they determined why you have pain because MG, CMS and LEMS do not involve pain, at least as a primary symptom.


http://neuromuscular.wustl.edu/synmg.html

http://neuromuscular.wustl.edu/lab/mbiopsy.htm

http://brain.oxfordjournals.org/cont.../1061.abstract

http://onlinelibrary.wiley.com/doi/1...GT+to+1900+SGT.

I hope you do get answers. A second opinion may be necessary, if you have not gotten advice from either Mayo or UC Davis. Be absolutely sure they know what is going on before they treat you. Genetic CMS disorders do not respond to immunosuppressant therapy, IVIG or plasmapheresis. They are NOT autoimmune diseases.

Make sure you do not use the muscle very much in the next few weeks to promote healing. If you have peripheral nerve damage, which everyone does when a muscle is sliced into, you can take sublingual methylcobalamin tablets to help heal those nerves more quickly. I get mine at www.iherb.com and use either Source Naturals or Jarrow ones.

I'm seriously concerned that you have a doctor who is out of their realm. The CMS genetic disorders are not known in depth by very many doctors and you really need someone who knows what they are talking about. I hope you get answers soon. It may take a couple of weeks. Good luck!

Annie

Attached Files

CMS2005.pdf (193.8 KB, 1104 views)

"M"

Glad to hear your biopsy went well! While I can't offer any advice I do have a question.
In your opening post you mentioned all your other tests were negative. Have you had a SFEMG done, if so was that test negative as well? Were you diagnosed by symptoms and response to Mestinon alone?

Rachel

Hi AnnieB3 - great info.

I actually only had pain from the biopsy. Otherwise, I do not have pain. I'll have to see what the results say and if it supports my doctors theory of Slow Channel Syndrom, then I'll bring up the Quinidine.

I've been taking 180mg of Mestion 4 x's per day and it's helped considerably, but not 100%. I think it will be very helpful to see the results to gain understanding and direction on what is going on with my body.

Thanks again.
m

Hi Rachel,

Yes I had the SFEMG and it was also negative. Yes, I was diagnosed with symptoms and treated with Mestinon alone. My symptoms started with having a hard time walking up the stairs and progress drastically over the next couple of months after I got a cold/virus to being very weak in my face muscles (droopy eyes, couldn't really make facial expressions, etc), jaw, neck, back, arms and leg muscles. I gained a horse voice and had issues breathing (shortness of breath). No pain. I just got weaker everyday until they started me on the Mestinon. It was pretty scary at the time bcuz I wasn't strong enough to drive, brush my teeth, put on my clothes or cook for myself. I lived alone at the time, so my mom was visiting often to help out. Now I can do all of those things, but still get exhausted/fatigued. If I don't rest immediately then the fatigue quickly turns into weakness. I'd say I'm about 85% of who I used to be in terms of energy when I'm having a good day, which might not be too bad since I used to be pretty hyper...LOL. However a good day consists of not working and doing minimal stretching to use my muscles. As soon as I work out, even lightly, I knock out for the rest of the day. I get weak and sleep. I can do a total of 12 minutes on the sit down bicycle, going fairly slow; but, when I'm done, like I said, I'm shot. Working is a real challenge too. I am beat after 8 hrs and pretty much go home to bed to rest for the remainder of the evening in preparation for the next day.

Oh and one more thing, then and now, I cannot take heat (sun heat, heater, or super hot water). My body gets overheated very easily and then it makes me super weak.