On Friday I went to a Newly Diagnosed Seminar at the MS Society in Wilson. I know I'm not newly diagnosed, but I am new to medication. I have never been to any MS group, not even when I was newly diagnosed - that would have been way too confronting for me. I applaud all those newly diagnosed people that attended - how courageous of them. There was maybe 30-40 people of all ages, although skewed towards younger, maybe three quarters were women.
My neurologist was speaking, so I was keen to hear him speak publicly. He was much the same as in a consult - scientific, (maybe hideously so for those not that way inclined) and humourous. I sat next to a beautiful blonde girl of 30 who looked vulnerable and anxious (I know she is a woman at 30, but her vulnerability seemed to peel back the years), she came with her mother. The woman on the other side, looked much older than her age, she was dressed older. She too was not newly diagnosed, and she was not new to medication. She came to hear my neuro speak as well. She was surprised that I had 2 young kids.... that's always a good thing. I'll put that down to looking younger than I really am, as opposed to looking too old to have kids!!
So I think what I will do is just list some of the things I wrote down in my notes. Yes, I know. I am a note taker... I can't help it.
The neuro put up a photo of his identical twin boys. There is a genetic component to MS. If one identical twin were to get MS, the other only has a 1 in 4 chance of getting it over a lifetime. Thus it is not wholly genetically based. My daughter's chance of getting MS in her lifetime is 1 in 50 and my son's is 1 in 100. My daughter's chance of developing breast cancer is 1 in 7.
More people are being diagnosed with MS due to better technology - thus the incidence of MS is increasing. Some people's MS is so mild, they don't know they have it. Some people die of natural causes and MS is found during their autopsy. The biggest risk factor for getting MS is knowing a neurologist.
There has been a general dismissal of the MS latitudinal pattern - it only fits in Australia, but not in other countries.
There is no consistent and reliable relationship between low fat diets and a reduction of MS attacks. In fact, there are a number of high fat diets recommended for treating MS as well, as myelin is a fat. Eating fat could make more fat available to replace lost myelin. It doesn't work either!
Smoking increases relapses + + + + +
Stress, while difficult to measure, seems to play a role in MS + + + +
Vitamin D and MS + + +
Omega 3 ?
Omega 6 +
Low fat ?
Manage stress, exercise and have a healthy diet = healthy life.
A virus that causes MS has never been identified. A number of viruses are linked to risk of MS. Epstein Barr virus in particular.
MS drug trials difficult to understand, even for neurologists specialising in MS. End points are very hard to define unlike for cancer drugs (cancer gone) or the oral contraceptive pill (not pregnant). MS drugs can help prevent issues in the future - no immediate relief. 50% of what you hear about MS is correct, but it is not always known which 50% is correct.
Arsenic was used to treat MS up until 1956. There are 2 treatments, those that work and those that don't. If it works neurologists will prescribe it.
Most action with lesions occurs when first diagnosed - less with time. If we wait to long to treat MS, may get no result.
Copaxone reduces relapses by 35% - inconclusive as to mechanism of action.
Tysabri: one IV per month. PML virus a complication in years 2-4 of being on Tysabri. Not everyone has PML virus, working on test to detect it. One in two develop antibodies to Tysabri after 12 months, thus it can become ineffective. When you stop Tysabri, no worse off as far as relapses as you would have been before starting the medication.
Being alive is dangerous.
New drug: Fingolimod (Gilenya) - tablet, not currently on PBS (usually takes 12 months). Not chemo-toxic. Works by blocking call out signal to white blood cells and holds them in the nodes for longer. Well tolerated. Increased risk of contracting shingles. If you haven't had chicken pox and you contract it while on this drug, you will die. Thus must check immunity, if not immune take vaccination prior to commencement. Must check heart rate and vision after 6 hours. Neuro's excited about this drug. Novartis pod cast on Gilenya, Monday Feb 7, 6pm.
On evidence Tysabri better than Fingolimod, although Fingolimod better than sub-cutaneous injectable drugs.
New drug: Cladribine (Movectro) - dose personalised to weight. Tablets for 5 days, then a month later may take another 5 tablets, then that's it for a year. Re-test and may need a top up a year later. Drug keeps working over time by knocking out lymphocytes, which means it takes out one step in the immune system attack on the central nervous system. Committed to treatment for 2 years, whether working or not - unsure as to when or if you can start a new treatment. Not as yet PBS listed.
Immunity works like a symphony - in tandem.
Lingo inhibitors - promote re-myelination.
Stem cells. Only for mice so far. 1in 4 of baby stem cells when transplanted will turn malignant. It's never been shown to improve disability. Very hazardous - high percentage of death after transplant.
CCSVI - getting much publicity. Venous congestion doesn't exist in all MS patients.
So that's my notes. Some of the things mentioned, will be a refresher for most people with MS. The stuff about the new drugs is news to me. I guess now I have started medication, I may become more interested in MS medication advancements.
On the way home from the seminar, all I could think was, thank God I am not newly diagnosed. It is a truly horrible, horrible time. When I was in hospital, after my lumbar puncture and was told I had MS, even though I self-diagnosed and thought I was prepared, I still needed to be sedated. It forces you to look at things like, how little control you have over your life and this lack of control is no different than before you were diagnosed... it's just that you are forced to reckon with it.
If you are newly diagnosed, I am sorry. But know this piece of advice that was given to me by a good friend, during a teary telephone call about a man, which with much greater hope and patience I adopted for my MS diagnosis.
One day you will wake up and MS won't be the first thing you think about.
I can't tell you when it will happen, but eventually it won't be the biggest thing in the front of your mind, invading your every thought and suffocating you with it's heavy uncertainty.
Another great friend gave me this advice, which I like to think about from time to time. God doesn't give you more than you can handle. I'm not particularly religious and God could be whatever the word means to you, but it has assisted me in some dim moments. Good luck my friend.