Myasthenia Gravis & MeSushil Menonsusheel.menon@gmail.com

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)

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;

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.

Doctors Visited

Doctors Visited

(Allopath)

No(s)

Endocrinologist 2

Neurologist 5

Ophthalmologist 3

Doctors Visited

(Alt. Medicine)

No(s)

Homeopath 1Ayurveda 3

Acupressure 1

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

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 America2. MG Podcast Educational Series3. 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

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

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.

Thank You !