Familial Connections Cannot Be Coincidences, Can They?

Life can be really strange and not always fathomable to someone like me who is not blessed with neither medical nor scientific qualifications.

familial connectionsOn a purely technical basis, I am just an ordinary guy. What I do know about diseases, illnesses and conditions – call them what you will – comes from my personal experience of being a patient, being a relative of a patient, or through being a journalist. In the last role, I carry research into facts to enable me to write and to talk to people who know much more than me about their subjects.

All this is the foundation on which my opinions are developed.

But let’s look at something that many may regard as mysterious: possible connections between diseases and family members!

Can multiple sclerosis be inherited? While in most cases the answer seems to be that it is not inherited, research published earlier his year proved that in some cases it can be. Familial links have been discovered. (http://news.ubc.ca/2016/06/01/ubc-vancouver-coastal-health-scientists-find-genetic-cause-of-multiple-sclerosis/)

Two different connections

In my own case, I have two family links with two different illnesses – epilepsy and MS. The fact that I have both is not totally surprising as it has been established that epilepsy and multiple sclerosis occur together more frequently than by chance. (https://www.ncbi.nlm.nih.gov/pubmed/24304488).

My brother and I developed epilepsy, although there was no known family history of it. I can remember as  a child, probably about 6 years old as I was 11 years younger than my brother, seeing him have a seizure in our garage. I ran into our backyard calling to our parents and shouting that Graham had “fallen over.” I knew what I meant – and so did they!

Later, a couple of his children showed signs of the disease while still young but they seemed to grow out of it.

However, a different son has since been diagnosed with relapsing MS and was told a couple of days ago that his recent MRI shows active lesions. My nephew has now been prescribed Tecfidera that he is going to take, despite having very real concerns about its possible side effects.

“I checked the drug out on the MS Society website,” he told me. What he saw did not exactly ease his concerns.

Connections or coincidences? I don’t really believe in coincidences.

This post, written by me first appeared in Multiple Sclerosis News Today.

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ian profile

Ian Franks is Managing Editor of the columns division of BioNews Services, owner of 50 disease-specific news and information websites, including MS News Today. He has enjoyed a successful career as a journalist, from reporter to editor, in the print media; during which he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain and uses his skills to write his own flourishing specialist MS, Health & Disability blog at 50shadesofsun.com. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

Do MS and Epilepsy share a link? I have both

By the time I went through various tests that led to being diagnosed with multiple sclerosis 14 years ago, epilepsy had already been part of my life since the age of 19. No-one mentioned any link.

The neurologist’s words still ring in my ears. Having already told me that MS was the diagnosis, he said: “I want you to go to Walton and have a couple more tests. It’s possible that your seizures were not epilepsy at all but were due to MS instead.”

shutterstock_330752915He explained that he looked through my medical history and then said I actually had MS since my early to mid-20s. I was now 49. After the extra checks, we met again. This time his words were no more comforting. “You do have two things wrong with your brain; you have both MS and Epilepsy.” He never thought of a link between them.

Because my brother also had epilepsy but not MS,  I never really thought that they could be related. However, they are two of the most common neurological conditions, and now researchers have found that having one may lead to higher risk for the other.

Researchers in the U.K., where I was born and lived until last year, used the entire population of England to create the largest study on this topic to date.

It is apparent that MS and epilepsy occur together more commonly than by chance. One possible explanation is that an MS lesion acts as a focus of an epileptic seizure; but other possibilities are discussed.

The researchers found that patients with MS have a significantly greater risk of developing epilepsy, and so, it is important for clinicians to be aware of the risk of epilepsy in people with MS.

Additionally, the study indicated that patients who exhibited epileptic symptoms first, like me, had a greater chance of being diagnosed with MS within 10 years.

Ok, it took 25 years for me to be given confirmation of having MS but, like many people, I had various hospital visits over the years without ever learning what was wrong. The eventual diagnosis was actually a relief; at last the illness had a name.

This study was conceived and led by Alexander N. Allen of the University of Oxford, Brasenose College, Radcliffe Square, Oxford, U.K.

The researchers analyzed two sets of data consisting of hospital admission records from the Oxford Record Linkage Study (ORLS), collected between 1963 and 1998, along with data covering all of England from 1999 through 2011.

Epilepsy and MS are fairly common conditions and would have a reasonable chance of occurring in the same person. This study was conceived to see if the two occurred more often together than expected by chance.

The research team looked for occurrences of hospital admissions for epilepsy in people after a previous admission for multiple sclerosis. This data was compared with a control group of more than 85,000 MS patients.

The researchers found a strong link between MS hospital admissions and admission for epilepsy within 10 years. The risk increased by 4.7 times in the ORLS group and 3.9 times in the all-England group.

This study also looked at admissions for epilepsy followed by admission for MS and found a 2.5 times greater risk in the ORLS group and 1.9 times greater risk in the all-England group. These researchers concluded that MS and epilepsy may occur together more often possibly because the lesions associated with MS act as a focus of an epileptic seizure.

Conclusions from the study suggested that doctors should be aware of the connection between MS and epilepsy. The findings may also help researchers come up with additional theories related to the two diseases.

 

* This study was supported by the English National Institute for Health Research and was published on December 4, 2013 in BMC Neurology.

 

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This article, by Ian Franks, first appeared in MS News Today.

Memory of exact date of MS diagnosis

memoryMemory is a strange thing and seems to work, or not work, in the most mysterious of ways, just like the concept of God.

My earliest recollection, believe it or not, was as a baby. I can recall being left outside a shop, in my pram, while my mum went inside. Now that is unlikely to happen today. Then I can recite old car registration plates going back years and years both my dad’s and my own.

But, for quite some time, all I could do was marvel at youngsters who knew their national insurance number, the UK equivalent of the US’s social security number, off by heart. Well, at least I didn’t know mine until multiple sclerosis put an end to me going out to work in 2006. Then I had to give my number to the authorities so many times that, suddenly and unexpectedly, I knew it.

But, although I have a clear memory of significant and important dates in my life, such as birthdays and anniversaries, there is one that just won’t come to mind.

Every time there is a social media post in an MS group asking when we were diagnosed with the disease, I am amazed that so many people are aware of the exact date; day, month and year.

Why would they remember that?

My diagnosis was made in April 2002. I can remember the circumstances and what the neurologist said. And how he showed me the MRI scan proving (contrary to the belief of some people) that, unlike the Scarecrow of the Wizard of Oz, I really do have a brain.

The relief in finally knowing what was immense. Yes, you did read that correctly. Being diagnosed as having MS was not a horror; it was a blessed relief. Now I could get on with my life.

But the exact day in April 2002? I haven’t a clue. What’s more, to be honest, that does not matter. It is not something I have forgotten, it’s just a date that, at the time, was not worth remembering.

It was just the same when I was diagnosed with epilepsy back in the early 1970s. Thinking back it had to be 1972 but that’s as close as I can get. You see, to me, that date was not worth remembering either.

Now, I am waiting for my Spanish NIE, my foreigner’s identification number. We are required by law to carry that with us, but I’ll probably end up knowing it anyway. That’s life!

 

 

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Fear is real as benefit change countdown continues

 dla ending pip

Time marches on and the calendar pages turn ever closer towards the date when the UK’s Disabled Living Allowance (DLA) is phased out for working age people1 and replaced with Personal Independence Payment (PIP). DLA recipients who have not yet been invited to apply for PIP are fearful of the day when the phone rings or the dreaded brown envelope drops through the letterbox.

DLA has been the benefit for people who have extra care needs or mobility needs as a result of a disability2 but the message is clear. DLA is ending and that person’s claim will end on a specified date unless a claim is made for PIP. If a claim is made, DLA will continue to be paid until that new application is assessed and decided.

Then they have the stresses of making the claim, possibly being required to attend a face-to-face interview, and finally waiting in trepidation for notification of the decision to arrive – in another brown envelope.

Of course, there are good stories as well as bad. Some people have gone from lower rate care and no mobility on DLA to the enhanced (highest) rate in both care and mobility under PIP. However, for others the opposite has been true with worst case cases going from highest on both sides with DLA to absolutely nothing at all from PIP.

There just seems no rhyme nor reason for the decision-making process.

Official figures3 show that of the nearly 261,500 DLA claimants so far reassessed4 for PIP 74%, or 193,500, have received an award – 67% (128,000) at the enhanced rate and 33% (63,500) at the enhanced rate for both care and mobility components.

And of the 54,200 original decisions that were challenged by claimants, 28% have had their award changed through the mandatory reconsideration process.

But the success of 74% of DLA claimants in gaining PIP awards still leaves a worrying 24%, or 68,000, with nothing.

The roll out of PIP has been beset with problems. The original scheduled implementation date of October 2013 was delayed owing to assessments taking much longer than originally planned. Now, all existing DLA claimants (aged 16 to 64 on 8 April 2013) will have been invited to claim PIP by 30 September 2017, according to the DWP.

 

 

Working age means anyone aged 16 to 64 on April 8, 2013.

Disability means any kind of physical or mental disability, such as Parkinson’s, multiple sclerosis, MND, epilepsy, blindness and many, many more both visible and invisible.

3 Department for Work and Pensions: Personal Independence Payment Official Statistics, published March 16, 2016.

As at January 31, 2016 – the latest figures available, published on March 16.

 

 

Epilepsy drug being tested for multiple sclerosis use

phenytoin

News that the generic drug phenytoin, used as an anti-convulsant to treat epilepsy, is being tested as a treatment for certain types of problems associated with multiple sclerosis, caught me by surprise.

Although I am not a doctor or scientist, I can speak with some authority about this drug because I was prescribed it for some 30 years.

This is because, in addition to MS, which was diagnosed 14 years ago, I also have had epilepsy since the age of 19.  Phenytoin or Epanutin as it is more frequently known in the UK (and Dilantin in the USA and Canada) was the drug of choice, accompanied by phenobarbitone.

Thankfully, I have been free of seizures for 40 years now but after undergoing tests, when MS was diagnosed, was told that I still had epilepsy as well.

At that time, my neurologist described phenytoin as a very old treatment and changed my prescription to Lamotrigine – which I find works far better than phenytoin ever did. With the former, my right arm sometimes shook as a prelude to a seizure. This made me stop whatever I was doing and physically walk away from it. That avoided many seizures. Since my prescription was changed to Lamotrigine, those ‘warnings’ have never been there but neither have the seizures.

However, if the trials prove positive to treat trigeminal neuralgia or other painful sensations (dysaesthesia) that would be great

Phenytoin has been studied as a potential neuroprotective drug. Results of a phase II study of 82 people with optic neuritis were announced at a conference in April 2015 and published in the Lancet Neurology in January 2016. Researchers found that people who had been treated with phenytoin over three months showed 30% less damage to nerve cells in the retina than people taking a placebo.

As with all drugs, phenytoin has side effects and, while they may not be known yet with regard to MS patients, it cannot be wise to not acknowledge the known side effects experienced by other people.

These include constipation, mild dizziness, mild drowsiness which are normally transitory and will pass as an individual adjusts to the medication.

From an MS patient’s point of view, phenytoin may affect an individual’s ability to metabolise Vitamin D and a GP may advise taking supplements. Phenytoin may reduce the effectiveness of some oral contraceptives and can interact with fluoxetine (Prozac), paroxetine (Seroxat) and St John’s wort. People should not take it if they have liver dysfunction and should also be avoided during pregnancy or whilst still breastfeeding.

One side effect not included above is gum recession. Gingival enlargement, (also termed gingival overgrowth, hypertrophic gingivitis, gingival hyperplasia, or gingival hypertrophy, and sometimes abbreviated to GO), is an increase in the size of the gingiva (gums). It is a common feature of gingival disease. Gingival enlargement can be caused by a number of factors, including inflammatory conditions and the side effects of certain medications.

Phenytoin is one such medication and dentists have told me that my 30 years on phenytoin is the reason I now have more teeth on dentures than my own real ones. Gingival overgrowth is a common side effect of phenytoin, termed ‘Phenytoin-induced gingival overgrowth’ (PIGO).1

 

1 Arya, R; Gulati, S (March 2012). “Phenytoin-induced gingival overgrowth.”. Acta neurologica Scandinavica 125 (3): 149–55. doi:10.1111/j.1600-0404.2011.01535.x. PMID 21651505.