[Anita Moyse]

Good morning, Paul

Electrodiagnostic medicine is the study of the diseases of nerves and muscles.  If you have been referred to our clinic, your doctor has recommended an EMG test to see if your muscles and nerves are functioning normally.  The results of the tests will help your doctor decide what is wrong and how it can be treated.

Doctors who do EMG testing have completed special training, and work either as Physiatrists (CAPMR). The doctor who completes your test should be certified either by the CSCN (Canadian Society of Clinical Neurophysiologists) or the AANEM (American Association of Neuromuscular and Electrodiagnostic Medicine).

Most patients coming for nerve testing will have nerve conduction studies (NCS). Many patients will have a second part of the testing called electromyography (EMG).

Was the blood work done called an Acetylcholine receptor antibody titre anti-MUSK?

I too might suggest seeking another opinion of a neurologist, but see if you can ask for one who might specialize in Myasthenia Gravis.

I have had Myasthenia gravis for 45 years now.  I go back to when there was no tests available. I was treated and diagnosed based on a Clinical Diagnosis and thank goodness was immediately given Mestinon and to this day I continue taking ONLY Mestinon.  What is wonderful to see now are the more advanced tests and treatments that are being explored so there is so many options.  As with many neuromusculars, it can be frustrating to come to a proper diagnosis.

Hope this helps.

Anita

[Anita Moyse]

Hi Jodi

I make sure that I take my prescribed medication (Mestinon 4 times a day). I am a grazer and thus eat 6 smaller meals a day thereby allowing my body to get a steady flow of food.  I try to eat sensibly.

I was diagnosed 40 years ago, and began physiotherapy to manage pain and mobility over the years.  Thank goodness for my therapists.

Make sure your footwear is optimum and fits properly.  I also wear custom made orthotics (from physiotherapy) so that the shoe is working FOR me and that I am balanced when I am doing physical activity.

My go to excercise is pretty much just walking these days.  Invested in an apartment sized treadmill..set up right in my apartment living room so I am sure to use it.

I learned that I have to Pace myself so as not to exhaust my body.  Excercise is with QUALITY not QUANITY.

Anita

 

[Anita Moyse]

I totally relate to some of the symptoms you are feeling as a “newcomer” when I was diagnosed 40 years ago.  Over the years my best advice is to figure out how to PACE your days..do not overload your body with physical tasks, but create a way to live with quality of tasks not quantity. Definitly create as best a scheduled routine as you can.   You must be sure to take your medications as prescribed.  I have a app I use to remind me during the day that I have grown to love.  It is called MEDISAFE ( I am on  a Samsung Android phone).  Be sure to always have your medications with you.  I am on Mestinon 4 times a day.  Mestinon peaks and valleys quickly, therefore taking it at regular times throughout the day works well.

When you are on a “down day”, give in to it if you can, or pick and choose lesser tasks.

Eat small bits of food at a time, so you don’t use a lot of energy to chew so it can allow the swallowing.  I still choke on and off  these days.

My very best form of excercise is to maintain walking.  Biking is not great, as my peripheral muscles are not at all cooperative or strong.

Make sure you have really good fitting footwear.  You want the shoe or footwear to do the work.  I also wear an orthotic to keep my body balanced.

I have gone to  physiotherapy as soon as I was diagnosed 40 years ago, and have nothing but praise for that type of treatments when the pains might interfere with my lifestyle.  They have been my sole support for painmanagement and mobility ability.

I hope this is some help.

Anita