Sunday, May 12, 2013

ME/CFS Awareness

ME/CFS Awareness


Anonymous said...

Hi, Alyson! I hope you are doing well. I have two mitochondrial specialist appointments coming up and I had an EMG that showed a slight myopathy. However, the neuromuscular neurologist said he thought that it could be caused by being hyperthyroid. I have had a fatigue for three years and also a thyroiditis, so I had my endo raise my thyroid meds enough to show me that no matter what thyroid meds he puts me on - my fatigue is still there. Well, the endo gave me so much thyroid hormone that it created a thyrotoxic myopathy. I am better now that the dosage is reduced, but alas - I am still left with severe fatigue!

Anyway, the purpose of my post: Do you regret having the muscle biopsy? It's a lovely scar, is it not?! Just kidding, of course. Well, I am not wanting it because of the scar and because I know of another mitochondrial person who had the biopsy and he told me that he has a horrible "burning" sensation in his legs when he walks now. This guy does, in fact, have a real and true mitochondrial issue that was revealed through genetic testing. He also told me that the muscle biopsy did not reveal anything mitochondrial. So, I think to myself - what's the purpose of the muscle biopsy? Also, I read on a mitochondrial foundation website that the genetics are advancing so quickly that in perhaps a year, no muscle biopsies will be required to diagnose mitochondrial issues.

Also, this is a person question and if you are not comfortable responding: NO BIG DEAL. However, I have read that insurance companies do not want to pay for the genetic testing. Did your insurance company cover the cost? And, if so or if not, may I ask about how much does genetic testing cost? I cannot find much information about this, but I just want to prepare myself for the cost. I thought I read it could cost around $5,000?

I hope you find what you are looking for. I appreciate that you have a blog and a full-time job. I do not have the energy for a blog - not yet, at least!

- readyforwhat7

alyson said...

Hi readyforwhat7,

I do not regret having the muscle biopsy because it helped rule out quite a few things. The amount of atrophy they found in my muscle also showed that I was not imagining my weakness (helpful for my own peace of mind).

Yes, I do have an awesome 1.5" scar on my left bicep. I just tell people that I got into a bar fight ("you should see the other guy!"). Ok, maybe not. Seriously, though. It does not bother me. Other than being a conversation starter (or awkward conversation ender), I don't really think about it. I have no residual effects from the biopsy, though it did take a while to heal.

I think some of the genetic testing was actually done using my blood, but I can't remember which used blood and which used the muscle.

My insurance company did pay for some of the cost of the biopsy and initial testing. It was a while ago, so I can't remember what I was charged for which procedures... I want to say that my initial biopsy testing was separate from the mitochondrial disease testing, although it was all done on different pieces of the same tissue sample. I think the initial mitochondrial DNA testing cost me around $1,500 after insurance (full price was something over $5,000).

The big whopper could have been the nuclear DNA testing; however, I had nearly reached my "out of pocket" maximum, so I ended up paying around $850 thanks to insurance (but full price was something over $14,000).

My last genetic test was some sort of a follow up for the nuclear DNA test because I had some potentially abnormal results. That test cost me about $1,000 after insurance (full price was over $3,500). I had to pay a big chunk because I had not yet reached my out of pocket maximum for this year.

In my case, all these tests were done over a period of about a year and the payments were spread out, which helped. Of course, everyone's insurance is different. I suggest you get a quote from your insurance company before saying ok to the procedure so you know what you're getting yourself into financially.

In hindsight, all the genetic testing probably wasn't necessary, particularly since most of my results were not medically relevant. However, I don't regret any of it because at the time it was the logical way to proceed. I have been searching for answers for so long, I needed to pursue this avenue.

I hope I've answered your questions. Good luck with your upcoming appointments!

Lauren Michele said...


I wanted to recommend a very resourceful doctor who specializes in fibromyalgia and CFS--Jacob Teitelbaum, MD--and he knows these conditions as an insider. He contracted CFS while attending medical school and had to drop out for a year to recover. In the ensuing 30 years, he's dedicated his career to finding effective treatment. He's written several books on the topic, including his latest, "The Fatigue and Fibromyalgia Solution" (Avery Penguin, August 6). For more info, check out his website, and to preorder,



alyson said...

Hi Lauren - Yes, I'm familiar with Dr. Teitelbaum. He has interesting ideas, some of which I've tried (particularly supplements). Thanks for sharing!