Sad about abnormal EMG results.

[DawnA]

I have not been here much lately. This forum is sure getting busy which is great!

Some of you may remember me. I had a neurologist tell me that my abnormal gait was psychological and their was nothing wrong with my muscles or CNS. I insisted their was something wrong with my muscles. I had had an EMG-normal done by a different physician, I just found out he is lousey at them.

Well I just had an EMG done by a physician who is well known to be good. My results were abnormal. He said that my doctor suspected mitochondrial myopathy and she may be on to something. My EMG showed myopathy, I don,t know the full results.

I happy that I finally have a test to prove that this is not psychological. I can't wait to tell the neurologist "I told you so"...he he...But I am also very sad. My brother is showing subtle signs of mito and so are my children. It would not be so bad if it was just myself affected. The problem with mito is it will be very hard to get a definite diagnosis. I hope I can be strong for my children. I have to continue with furthur testing for their sake.I don't want them to see my sadness or to worry about their own future. Maybe the mito vitamins will help them to feel better. I am just a little freaked out right now.

Dawn

[EarthMother]

Dawn,

Thank you for sharing your follow-up EMG and findings ... it sounds like you have found an important piece in your healing puzzle.

I know the maternal concern we feel for family members, I suspect it is hardwired in our DNA for good reason. My challenge is to try and not let myself wander into that 'mind-made' future of endless possiblities, but rather to bring myself back to the present moment. The now, is always easier to handle, and always enough. Sounds like your NOW is worth a warm embrace.

Congratulations on finding a lead, & good thoughts to you and those you hold dear to you.

EM

[Merrill]

Hi Dawn. I hate to sound dumb, but what's an EMG? Is it like an MRI of the brain? (Have you had one of those yet?) You said you hadn't posted in a while, and since I have trouble keeping everyone's details straight, I searched for your posts to get a sense of what's been going on for you lately. First, I want to say how sorry I am to hear you're having a tough spell right now ... and I wonder how your daughter is doing, now that she's being treated for POTS.

I'm concerned about one line in one of your earlier posts--you wrote "I used to have MS." Multiple sclerosis? My brother has this disease (diagnosed 5 months ago with MRI of the brain) ... and so does my sister-in-law. Sadly, this is not a curable disease--one that a person "used to have." Are you being treated for it--or were you ever? (There are some great new drugs in use now...)

I wonder if this could be the source of some of your discomfort right now... flare ups can be quite devastating.

I hope you get some answers soon and that you find comfort among family and friends while you wait. Keep us posted!

All the best,

m

[MightyMouse]

EMG=Electromyography

It involves the insertion of needles into the nerves / muscles with transmission of electrical current. The test show if the nerves are functioning within normal limits.

Dawn, I understand what you're going through. I remember feeling all sorts of stuff after my EMG came back abnormal. I had been having horrible pain, numbness, headaches, falling and dropping things, swallowing problems, weakness... Combine the EMG with the MRI that followed, and there was clearly a problem: my spinal cord was compressed between C5-6 down to about 1/3 of normal, and I had what looked like a bulging disc (but was actually a ruptured disc).

anyway, I felt vindicated, angry, and happy all at onec because I had an answer...quickly followed by being sad that I'd wasted so much time, nervous because I needed surgery to try to fix the source of the problem. Sadly, after 2 surgeries, my EMG's remain unchanged. So, I have permanent nerve damage. I have gained back some functional things like my strength and control--I don't fall anymore (at least not from that!), drop things. I also had improvements in swallowing. I still have pain and numbness, but not as severe.

I hope that your supplements help you! Nina

[Michelle Sawicki]

Hi Dawn,

I did a write-up on mito/dysautonomia in one of the newsletters:

http://www.dinet.org/images/Spring2003.pdf

The only doctor I know of that is interested in the connection between dysautonomia/mito is Dr. Rick Bloes in California. I think he sees children. Here is some info on him:

http://www.usc.edu/schools/medicine/depart...PersonIs_ID=117

Have you contacted the UMDF? They have some good info they can send to you.

My heart goes out to you. I know this must be an anxious time. Know that we are here when you need someone to talk to.

Michelle

[DawnA]

Thanks for the replies and thoughtful words. I am feeling much more positive today. I have been feeling good this past week. I get very excited when I feel good...like a kid about to go to disneyland. I treasure these days when I have them and try to make the best of them.

Earthmother, I am very happy to finally prove that there is something wrong with my muscles. I had been trying to convince my neurologist of that for a long time. She said that I have dysautonomia , but my muscles and CNS have nothing wrong with them. My abnormal gait was a unconscious conversion to gain secondary attention from past traumas. At firts I went along with it. When I came out of a major depression I knew better. My PCP reffered me to a genetisist who ordered the EMG. Deep down I wish it was pschological. THen I would not have to worry about my kids. However I am glad that they are taking this seriously.

Merrill. My daughter with POTS is doing well. Thanks for asking. She also have other issues but is doing better. My youngest who is going to be nine has crohns, learning disabilities and psychiatric problems. It is hard to watch your children suffer, but I feel blessed because I know soe children much worse off than them. As far as the MS...that must of been another Dawn. I have never been dx with MS. Thanks for the concern.

Nina an abnormal test is good/bad new isn't it. I have always hated it when people asked about test results...and said that is good when they came back normal. Something was wrong and I wanted an answer.

Michel thankyou for the valuable information. I very much appreciate that artical on dysautonomia and mito. That article is what made me suspicious of mito before any Dr suggested it. Also the information on the POTS is what brought me to my POTS dx. Thanks for this site. The info is so valuable.

Hugs,

Dawn