Have been diagnosed with MG recently; had to do a lot of run around for almost 2 months before it got diagnosed & hence have captured my journey in the deck. Hope this helps...

1. Myasthenia Gravis & Me
Sushil Menon
susheel.menon@gmail.com

2. My Medical Profile
• Name : Sushil Menon
• Age : 39 years (Male)
• Blood Group : B+
• Medical History :
– Diabetic since 8 years : on oral medications
– No other serious medical history
– Recently(May’14) diagnosed with Ocular
MG (affecting the eye muscles)

3. My Symptoms (First Signs)
• Diplopia : Double Vision /Distorted Vision
• Drooping Eye Lid : Started with Right Eye. Even the left eye got affected in some
weeks; was progressing. Both eye lids close to an extend of 90% and no matter
how hard I try, cannot force to open it.
• Acute weakness in operating daily tasks; improves a little with periodic rests;

4. What is Myasthenia Gravis
• The voluntary muscles of the entire body
are controlled by nerve impulses that arise
in the brain. These nerve impulses travel
down the nerves to the place where the
nerves meet the muscle fibers.
• Nervefibers do not actually connect with
muscle fibers. There is a space between the
nerve ending and muscle fiber; this space is
called the neuromuscular junction. When
the nerve impulse originating in the brain
arrives at the nerve ending, it releases a
chemical called acetylcholine.
• Acetylcholine travels across the space to
the muscle fiber side of the neuromuscular
junction where it attaches to many receptor
sites. The muscle contracts when enough of
the receptor sites have been activated by
the acetylcholine.
• In MG, there is as much as an 80% reduction
in the number of these receptor sites. The
reduction in the number of receptor sites is
caused by an antibody that destroys or
blocks the receptor site.

5. Doctors Visited
Doctors Visited
(Allopath)
No(s)
Endocrinologist 2
Neurologist 5
Ophthalmologist 3
Doctors Visited
(Alt. Medicine)
No(s)
Homeopath 1
Ayurveda 3
Acupressure 1

6. Tests Conducted
(which helped diagnose MG)
Name of Test Remarks
MRI Brian & Spine + Contrast MRI Brian There were no observations in this report;
Acetyl Choline Receptor Binding
Antibody
These tests were repeated from two different labs;
Different results from both labs; Not conclusive enough;
Neostigmine
Had to be admitted in Day Care at Max for this test
Result before neostigmine : http://youtu.be/OA7gIFMzr2c
Result after neostigmine : http://youtu.be/JPBCgQlrypk
This is a conclusive test to diagnose MG.
RNS & CT Chest + Various other Blood
Test Reports
Other
Report-June-14
Binding Antibody
Lab 1
Binding Antibody
Lab 2
Max Discharge
Summary
RNS CT Chest
Brian & Spine
MRI

7. Important Reads on MG
Name of Doctor Remarks
Good Read on the following :
1. Ocular MG
2. Autoimmune MG
3. Congenital MG Syndrome
4. About Swallowing & Speech in MG
5. Thymectomy in MG
6. Nutrition on MG
About medicines for MG :
1. Prednisone
2. Pyridostigmine
3. Drugs to avoid if one has MG
Important links :
1. MG Foundation of America
2. MG Podcast Educational Series
3. Some Videos on YouTube
http://www.myasthenia.org/
http://www.myasthenia.org/livingwithmg/podcasteducationalseries.aspx
https://www.youtube.com/watch?v=sdQh6iTI-3g
Ocular MG Autoimmune MG Congenital MG
Syndromes
Swallowing &
Speech
Thymectomy in
MG
Nutrition in MG
Prednisone Pyridostigmine Drugs to Avoid

8. Learnings
• Diagnosis might take a long time & hence patience is required;
• Go to the right Neurologist; unfortunately there will be a lot of tests one will
have to get done primarily because the symptoms of MG resembles with
many other neurological diseases; ACHR Antibodies; RNS & Neostigmine the
most effective to diagnose MG which worked for me; in my case the
diagnosis took almost 2 months
• If one is a diabetic then there are limitations with the MG drugs as steroids if
given in high dosage will have much adverse affect on the blood sugar levels;
Even with small dosage of steroids (10mg/5mg) my blood glucose after
lunch was shooting up;
• Your Neurologist & Your Endocrinologist will have to be in close touch and all
your MG medications need to be discussed with the endocrinologist for any
adjustment to be done in the medicines one is taking for Diabetes.
• Medications to take effect will take a lot of time, so there might not be a
quick fix for this; Doctor’s say that 2-3 months is normal before you can see
any affect of the medicines.
• Family Support is the most important which will help you recuperate. Stress
is not at all good for MG & it can aggravate; so always try to be happy.
• Never give up ! Be determined to overcome !
Maintaining
Your
Attitude
Sense of humour and
Timing
Hope
Enthusiasm and
Normal life
Is
Absolutely essential
Maintaining
Your
Attitude
Sense of humour and
Timing
Hope
Enthusiasm and
Normal life
Is
Absolutely essential

9. Cost of Treatment
• Initial Tests are costly, like :
– MRI Brian & Spine (Plain & Contrast)
– RNS (Repetitive Nerve Stimulation Test)
– CT Chest
– ACHR Antibodies
– Also if you stick to one good Neurologist (if you find in the very
beginning) you will save money on not investing on
consultation of many other Neurologist’s.
• Once it is diagnosed, average expense on medicines for MG
would be around 1k per month;
• Every month one needs to do the LFT & Haemogram too.

10. Thank You !