Diagnosis: You have MS, but what type – and what does that mean?

A leading neurologist has talked about giving patients the news that they have multiple sclerosis and their reactions. He has also described the different types of the disease.

Dr Neil Lava, a neurologist at Atlanta’s Emory University School of Medicine, was interviewed by Everyday Health.

diagnosisEveryday Health, Inc. is a digital media company which owns websites relating to health and wellness. It says it aims to inspire and empower people to live their healthiest lives, every day, through trusted, medically reviewed information and expert health advice from the nation’s leading healthcare providers and patient advocates. (Declaration of interest note: This is one such company for which I have NOT written.)

Dr Neil Lava (pic: Emory Healthcare).

In his interview, Dr Lava tackled the issue of giving patients their MS diagnosis.

He said:They have a symptom. I have given it a name. I haven’t changed anything by giving it a name, but I have changed everything by giving it a name.”

That’s a point that I truly understand. For me, finally knowing what was wrong came as a relief.

Diagnosis sometimes overwhelming

Speaking of reactions, he said: “I am always amazed that when people are first given the diagnosis, sometimes it’s really overwhelming for them. But when they put things in perspective and realise that they are going to live a long productive life, and I am going to help them do that, they actually tend to do very well.

I tell them that 10-15% of patients have what’s called benign multiple sclerosis, where you can have a few symptoms throughout your life, but really never have any significant deficits.”

That’s interesting to me as in April 2002, when I received my MS diagnosis, the neurologist told me that I had benign MS. Now, though, it has developed through relapsing to secondary progressive.

Dr Lava talked about the types of MS that we know well: relapsing, primary progressive, and secondary progressive.

He said: “The most common type, 80-85% of patients have this, (is) relapsing pattern where they will have an attack: a neurological symptom that will last for a period of time and then disappear. And at some other point in time, they will have another symptom.

“At some point they are at risk to become secondarily progressive, meaning that they will have fewer attacks but they won’t recover as well and they will start having more trouble functioning, and very gradually struggle more and have more difficulties.

“But once they become secondarily progressive, I don’t have very effective medicines to slow progression, although we are looking for those.

“About 10% of patients have what’s called primary progressive disease where they will develop a neurological symptom. They may have little trouble walking. Their legs may get a little stiff. They never have attacks. They just have that symptom, and over time that very gradually gets worse and they have more trouble functioning.”

Therapy very early

Dr Lava continued that some people with relapsing MS may never go on to secondary progressive disease. He said: “We have found that the sooner you put someone on therapy, the better off they do in the long run. So, we get them on therapy very early in the hopes of keeping them in that relapsing phase and reducing the number of attacks.”

Dr Lava compared treatment options today with 25 years ago, and looked to the future. He said: “It’s a very different disease than when I first started treating patients. In 1993, we had our first medication that was FDA-approved for MS. Before that, we had nothing to do for patients. We have so many choices now, it’s really exciting.

“What we are waiting for are things that maybe stimulate myelin, and of course the real thing is, can we regrow brain cells? I mean, can we stimulate them? Is there a way to create new pathways to compensate for the damage that’s been done through the brain and spinal cord? That’s probably going to be the most exciting thing.”

Dr Lava’s full interview by Dr Sanjay Gupta, for Everyday Health, can be found here.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

New MS studies unveiled at Paris meeting

Two reports from the multiple sclerosis get-together in Paris, held last week, caught my attention.

The session was a joint meeting of ECTRIMS and ACTRIMS, the European and Americas Committees for Treatment and Research in Multiple Sclerosis.

Both items from Paris are of special interest to me, as I have personal experience of them.

ParisThe first is news that, after the first round of symptoms, multiple sclerosis can stay mild without causing major problems for decades. This has been uncovered by a 30-year British study.

The second is research that shows that two things appear to increase the risk of MS, independent of each other. One is a strong immune reaction to an Epstein-Barr virus infection while the other is low levels of vitamin D.

My own experience of life with MS includes initial symptoms in the mid-1980s. Diagnosis of ‘benign’ MS followed in 2002, and it was another 10 years before the onset of major problems. They have since progressed.

That’s a period of more than three decades.

I had a brush with EBV, contrcti.ng glandular fever, otherwise called mononucleosis, in my early 20s, and was found the be deficient in vitamin D a year ago.

Paris: Research studies

In Paris, Karen K. Chung of the University College London Institute of Neurology discussed “Does ‘benign’ multiple sclerosis exist? A 30-year follow-up study of people presenting with clinically isolated syndrome”.

Scientists refer to cases with no apparent impairment of the nervous system as benign MS. Despite this, the exact definition is still undecided and, in fact, some researchers argue that benign MS does not exist.

As far as EBV and vitamin D are concerned, researchers from Finland and the USA studied the two risk factors in pregnant women who later developed MS.

Getting to see neurologist proves not so simple

Ysbyty Gwynedd (Gwynedd Hospital), Bangor, North Wales. Place of my MS diagnosis and later consultations with MS nurse.

Ysbyty Gwynedd (Gwynedd Hospital), Bangor, North Wales. Place of my MS diagnosis and later consultations with MS specialist nurse.

Three or so years ago, I was sitting in a North Wales regional meeting of the UK’s MS Society and distinctly remember a society staffer saying that everyone with multiple sclerosis had a right to see a neurologist. If we wanted to see one, we only had to ask.

Well, in my case, I had not seen a neurologist for years having been transferred from him to seeing a specialist MS Nurse, had only ever had one MRI scan and that was prior to diagnosis in 2002, and had only ever been told that my MS was ‘benign’. In fact, at diagnosis the neurologist said that he did not expect my condition to deteriorate any faster in the future than it had in the previous 25+ years.

If I wanted to see him again, just tell the MS Nurse, I was told.

As is MS’s way, it did get worse and three years ago I was seeing the North Wales MS nurse every six months. So, on my next visit to him, I asked to see a neurologist. His reply was to ask me what good I thought it would do.

My reply was that I’d like to know exactly what type of MS I had and to discuss any medications he might think should be prescribed for me. The nurse’s reply let me speechless, not something for which I am known. He said that I had had RRMS but now had moved on to SPMS and that it was unnecessary for me to see a neurologist as there was no medication suitable for me.

Let me remind you this was a nurse, albeit a Specialist MS nurse, telling me what sort of MS he thought I had – without any further tests. It was just his opinion, and he blocked me from seeing a specialist doctor. Fortunately, this particular man has moved on now and North Wales has a new MS nurse.

Having moved from the UK to Spain, I now have to ask my new GP to refer me to a neurologist here. Maybe, I’ll now get a second MRI – 14 years after my previous one – and even find out exactly what type of MS I have.

Watch this space for further information.