Big 5 Luncheon

But you look so good …

I was diagnosed with MS two years ago. Of course I don’t think that makes me an expert, but when a family member mentioned an old wives’ tale about the disease and tried to convince me that it was true, I thought someone really should create a guide.                                                  

To be honest, I’m not sure what feelings this is supposed to evoke, but the speaker, perhaps unknowingly, has just insinuated:

•  People who look good aren’t supposed to have an illness

•  Suffering is always visible

 Just because someone looks as though they’re doing extremely well doesn’t mean that they aren’t experiencing numbness all over their body, the MS “hug” (described as having a large belt cinched tightly around your torso), cognitive fog, or fatigue beyond your wildest dreams.

Please feel free to tell us how good we look, but not in spite of our MS. We look good – and we also happen to have MS.

Oh, I know someone who has MS … !

As I tell more people, many immediately remember someone else they know – or knew. What comes next depends  on prior experience. I’ve received a super cheerful “Oh my boss’s wife had that. She’d be sick sometimes, but get better right away.” I’ve  also received shocked silence, followed by “My sister had MS. She didn’t do well.”

 Please remember MS is not a one-size-fits-all disease. We’d like you to listen and understand that each of us has symptoms that are unique to us. You don’t have to keep your prior experiences with MS a secret. Just understand that everyone is different. 

Are you sure you have MS …?

That question can toss a wrench into the whole acceptance process. All it takes is a pinch of doubt to throw us off track. We have a right to question our doctors if we aren’t sure or need further explanations, but this question is almost like asking us to prove what we are experiencing.

 Why not ask how we are feeling to start a discussion? Or what helps relieve our discomforts? Or if we need any help? (But only if it’s really meant.)

 Thank you for caring about us!

The people who ask these questions are usually coming from a place of concern, even love. I’m so thankful that not everyone runs away or is afraid to open a dialog. Those reactions are so much worse. Advances in MS research to find a cure are happening every day. When a cure is found, we can all celebrate together.

What is the worst thing someone has said to you? Write us at inland@multiplesclerosis.co.za or leave a comment!

(Article courtesy of Maxine Young – freelance writer – Momentum  Winter 2009 – 10 – National MS Society New York)

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She holds the degrees of MBChB and LLB. She is an admitted attorney of the High Court of South Africa, is a registered medical practitioner and a qualified patent attorney. Dr Gregory predominantly practices Intellectual Property Law but still maintains an active, practicing interest in medicine. She has authored papers for the South African Institute of International Affairs on the relationship between innovation and regional Intellectual Property Rights, and the relationship between Intellectual Property Rights and Climate Change and Trade in Southern Arica.

She has previously been invited by the World Trade Organisation to deliver presentations on the African Regional Perspective of the effect of TRIPS (Agreement on Trade Related Aspects of Intellectual Property Rights) and Public Health.

Dr Gregory was diagnosed with Multiple Sclerosis in 2009 and has come to understand the challenges of living with this illness for which there is no cure. Multiple Sclerosis is a disease of the Central Nervous System (brain and spinal cord) – the fatty substance (myelin sheaths) surrounding the nerves are damaged and signals to the body are disrupted causing a myriad of possible symptoms.

“I look forward to working to further the cause of the MSSA both locally and internationally” commented Dr Gregory after being welcomed to the committee.

The MSSA can be reached on their National Helpline  0860 45 6772

“Gilenya is the first oral drug that can slow the progression of disability and reduce the frequency and severity of symptoms in MS, offering patients an alternative to the currently available injectable therapies,” Russell Katz, MD, director of the Division of Neurology Products at the Center for Drug Evaluation and Research, said in the FDA statement.

Patients should be monitored for bradycardia when starting fingolimod therapy, and treatment is also associated with an increased risk for infection, the release adds. Macular edema has also occurred, and ophthalmologic evaluation is recommended for those taking the drug.

A release from Novartis adds that fingolimod has been approved with a Risk Evaluation and Mitigation Strategy (REMS) to “inform patients and healthcare providers on the safe use and serious risks of Gilenya in treating relapsing forms of MS. The approved REMS includes a medication guide for patients and a letter and safety information guide for healthcare providers.”

The company has also initiated a 5-year, worldwide postauthorization safety study to monitor particular safety outcomes and a voluntary pregnancy registry to provide more data on use of fingolimod in women with MS who are pregnant or may become pregnant.

The approval was largely expected after fingolimod received a unanimous endorsement from the FDA’s Peripheral and Central Nervous System Drugs Advisory Committee in June.

Given orally, fingolimod acts as a superagonist to sphingosine-1-phosphate receptors on the surface of thymocytes and lymphocytes, reducing the overall number of circulating lymphocytes available to mount an autoimmune reaction to the myelin sheath surrounding axons in MS.

The most frequent adverse reactions reported by patients taking fingolimod in clinical trials include headache, influenza, diarrhea, back pain, elevation of liver enzyme levels, and cough, the FDA statement notes.

For more reading on this topic: http://www.medscape.com/viewarticle/729172                                                       

What to expect if planning to try Gilenya

By Cherie C. Binns RN BS MSCN  reviews the medication on www.msviewsandnews.org   as follows:

If you have been waiting for one of the new oral medications for MS to be FDA approved, you are likely excited to see that Fingolimod (marketed under the name Gilenya) was approved for patients with relapsing forms of MS on September 21.   Many people with MS (PWMS) have been awaiting this news hoping to be able to move away from the injectable medications.  The actual medication, however, will not be available for prescription for several more weeks.

 Gilenya is a once daily immuno-suppressant medication that works by keeping lymphocytes ( a white blood cell that fights infection and is prominent in MS relapses) in the lymph nodes preventing them from entering the central nervous system and causing inflammation that could lead to new MS plaques and damage.  This drug is not without serious side effects, however.

For those who have been on interferons and experienced “flu-like symptoms”, you can anticipate the same with Gilenya and perhaps more serious than that experienced with the injectable medications.  This drug also has been found to cause cardiac problems in some patients in the trials as well as vision problems.  The first dose is recommended to be given in a medical setting with a period of 6 hour supervision and cardiac monitoring following the dose as cardiac problems generally occurred with that first dose.

Because there were two deaths in the clinical trials from herpes infections, it is recommended that all persons planning to start on this drug have a VZV titer (varicella zoster virus) and if antibodies are absent or low, the person receive the chickenpox vaccine.  There will likely be a waiting period of a month or two after this vaccination prior to starting on medication.   An EKG is also recommended to rule out cardiac irregularities as well.   Gilenya does suppress the immune system so a complete blood count is needed prior to beginning therapy and at least every three months thereafter. Because elevated liver enzymes were common in trial subjects, a liver function test is needed prior to therapy and at least every three months thereafter.

The recommendation is that this drug be used as a second or third line of defense in the treatment of MS meaning that it is not for the person newly diagnosed or those who are doing well on the injectables.   It is recommended for people who have continued to relapse on the injectables or those for whom PML is a threat due to long term use of Tysabri.   Currently there is  not sufficient safety data on long term use to assure that this drug is safe for use over more than a couple of years.

(Susan Jeffrey – Medscape)

For more information on this new medication, go to this link: http://www.webmd.com/multiple-sclerosis/news/20100922/gilenya-first-oral-ms-drug-gets-fda-nod?ecd=wnl_nal_092210