Overcoming MS!Dr BS Singhal Follow-Up15th May,2013

Updated Timeline

12th /13th Sep, 2012

3rd Oct, 2012

20th Dec, 2012 16th Jan, 2013 2nd Feb, 2013

1st April, 2013

10th Apr, 2013

MRI of Spine and Screening of Brain, ANA Test. Suggestive of demyelinating disease

Lumbar Puncture done. High IgG levels in CSF observed

First Dosage of Fampridine 10mg

Discontinued Famridine intake

Joined Patients Like Me and started maintaining periodic log of symptoms and condition

Switched to Gluten free and healthier diet

Resumed Fampridine 10mg

Reason for discontinuing Fampyra

• Started Fampyra on 20th Dec, 2012

• Initial improvement is very noticeable

• Towards the end of month, I got down with a bad flu and the

walking problem largely aggravated

• Not able to clearly understand the reason for improvement/

degeneration, I took a 2 month break from Fampyra

• The stiffness in legs worsened in the break.

Other medication tried

After doing some self research and consulting with one of our family’s nutritionist, I made following changes to my diet from 1st week of April: 1) Cutting down Gluten intake in diet2) Replacing Omega 6 intake by Omega-3 (cooking oil + flax seeds + supplements)3) Vitamin D-3 supplements4) Increased intake of greens, fruits and nuts5) Limited intake of dairy: complete cut down of milk, consuming fermented milk

though6) Complete cut down on deep-fried/high calorie junk food, alcohol7) Maintaining daily log of diet also to keep weight under check8) Mild exercise 3-4 days a week 9) Started taking some ayurvedic anti-oxidants to reduce oxidative stress

Diet Chart

Intake required for Food Types

Gluten Substitutes Rice, Corn flour (organic), Gluten free flour, Gram flour

Myelin Synthesis Foods rich in Vit B, A, C, K and Minerals: Greens!

Sulfur (for neurotransmitter synthesis) Cabbage family, Onion Family, Mushrooms

Vitamin D-3 Button Mushrooms, Cod Liver Oil, Eggs, Natural Sunshine

Vitamin B-12 Eggs, Cheese, Millk and Yogurt, Whey Protein, Yeast Extracts

Anti-OxidantsBeans, Legumes; Walnuts; Coloured vegetables (tomatoes, Peppers, Carrot); Bright Colured Fruits like Berries, Peaches, Oranges; Spices like Turmeric, Green Tea

Omega 3 Fatty Acids Flax Seeds, Walnuts, Soyabean

I’ve started consuming these in great proportion in my diet

Patients Like Me

Patients like me is a Patient network where both patients and

care-givers can very neatly create a log of all their

symptoms/conditions and also connect with each other through

sharing their experiences.

This process also helps doctors, researchers and other entities

who practise medicine to have a wonderful source of both

primary and secondary research data.

PLM Charts (MS Specific)

Following are some of the charts through which a patient can

create a log of symptoms/ condition which is otherwise very

difficult to quantify:

1) My Symptoms

2) Multiple Sclerosis Rating Scale (MSRS)

3) Quality of Life (QOL)

My Symptoms Chart

Patient can rate the severity of some or all the symptoms (on an interval scale) of MS on a given day

My ChartBowel movements were highly irregular and suffered from chronic constipation during 1st Fampyra intake. I’ve increased fiber and water intake to better that

More than daytime sleepiness, I feel fatigued by end of day. Office work is also a bit stressful.

Though stiffness reduced significantly after resuming Fampyra, there is a trend of diminishing returns.

Multiple Sclerosis Rating Scale

Patient can rate the impact of MS symptoms (on an interval scale) on day-to-day life

My Chart

Activity 9th Feb 20th Feb 7th May 12th MayWalking Mild Mild Mild MildUpper Limb Function No Symptoms No Symptoms None NoneVision No Symptoms No Symptoms No Symptoms No SymptomsSpeech No Symptoms No Symptoms No Symptoms No SymptomsSwallowing No Symptoms No Symptoms No Symptoms No SymptomsThinking/Memory Cognition No Symptoms No Symptoms No Symptoms No SymptomsSensation/Burning/Pain Mild None Mild Mild

Walking for more than 50 meters at a stretch is an issue though after resuming Fampyra I managed to clock 500 meters in 7.5 minutes!

Over the past two weeks, feeling a sensation in upper limbs and knees as well.

Overall Summary

Detailed Break-up of MSRS Activities

Quality of LifeQOL Score indicates how one’s condition and treatment affects one’s physical, social

and mental well-being

Quality of LifeQOL Score indicates how one’s condition and treatment affects one’s physical, social

and mental well-being

Quality of Life

QOL Score indicates how one’s condition and treatment affects one’s physical, social and mental well-being

My QOL Scores

To Summarize

• There has been an improvement in walking after resuming

Fampyra though the returns seem to be diminishing

• Feeling of overall well-being after changing diet. However,

level of fatigue has gone up over past 1 month (season change

and travelling stress?)

Next Steps

• Should I get tested for Gluten intolerance/leaky gut

• Natural Supplements like

- DHA Advantage (natural supplement, available in US)

- ENADA (NADH supplement): very powerful anti-oxidant,

builds back immunity also.

Am going to overcome this!