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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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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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.

To tell or not to tell about having MS

Everyone who receives a diagnosis of having multiple sclerosis faces some immediate challenges.

One is coming to terms with the diagnosis, which is something that might come as a shock. Another is to decide whether to be open about it. To reveal your news to everyone is always an individual choice as no single answer suits all, no ‘one size fits all’.

tellingI received my diagnosis in April 2002, almost 16 years ago. It was not so much a shock as a relief that I finally knew what was wrong. Then, of course, I had to learn as much as I could about the disease with a somewhat strange name.

To tell or not to tell? This is an issue we all must face. And, if we tell, with whom are we open – and who not?

There’s no one correct answer as we are all different, have our own personalities, and live our own lives. As such, we all need to make up our own minds, depending on how comfortable each of us feels.

It may help to break up who might be told into different groups. For example, your husband or wife, or other partner, along with immediate family; your close friends; your employer and colleagues; and anyone else.

There is absolutely no need to tell everyone that you have MS but, of course, there is no reason why you shouldn’t.

Upset, accept, understand

I think that the first people we are most likely to tell are those closest to us. However, they are also the most likely to be upset by the news and may need longer than others to accept your situation. Add to that, just as you have to learn about MS and what it means, there is a fair chance that those nearest and dearest to you won’t fully understand what it means.

Probably, the best advice I can offer is to try to give as much informative as you can. It’s important, too, to let them know that MS affects everyone differently, so that there’s no need to assume the worst possible future for you.

Children present another problem, and it’s one I have not had to experience personally. From the experience of others, it would seem best to tell children as much as you think they can understand at their age. Honesty is the best policy, so they learn from you, not go to others to get possibly incorrect information.

I did decide to let my employer know and, to be fair, the news was taken well. Some physical adjustments were even made to make my work easier. In fact, I worked there another five years before it became obvious that the physical disability, namely mobility problems caused by MS, made working there impossible.

As I said earlier, whom you tell and how soon, is a personal decision only you can reach. I made my choice in 2002. If you’re having trouble deciding who to tell, when, and how, I suggest you follow click here to find some great advice.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

* * * * *

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 intended for your general knowledge only and 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 and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

Benign MS: Is It Real or a Myth?

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What is benign MS? Does it even exist? Certainly it is not one of the types of the disease often listed as making up the multiple sclerosis family.

It is a term that is surrounded by controversy, not least among neurologists themselves.

Some believe that those who go 10 years without a significant disability are unlikely to reach the point where they need assistance to walk. In fact, they also believe people in this category may be able to stop treatment. Many neurologists, however, treat benign MS as a myth. They dismiss the classification and don’t make treatment decisions based on a “benign” designation.

benignWhen I was first diagnosed with MS, my neurologist at the time told me several things. My medical records indicated I had MS way back in my early to mid-20s, he said. At the time of my diagnosis, I was 49. He also said my MS was benign.

Because it had taken so many years to develop, he said, he saw no reason why it should develop faster in the future.

He was wrong.

My diagnosis was 15 years ago next month and, in the years since, the disease worsened more rapidly than in the previous 27 years. Of course, we do know that MS is a progressive illness.

So, what happened in those 15 years?

Walking

2002 – Slight difficulty with dragging left foot. Had to think about walking, every step. Walked unaided.

2017 –  Unable to walk more than 10 to 15 yards. Use wheelchair to travel any longer distance.

Standing

2002 – Not affected significantly.

2017 – Unable to stand longer than two to three minutes.

Stairs/steps

2002 – Slow but manageable.

2017 – Two, maybe three, one at a time, holding on to rail.

Getting up from sitting or lying down

2002 – No real issues.

2017 – Not easy but grab handles make it more manageable.

Driving

2002 – Able to drive manual car.

2017 – Only able to drive automatic car because my left foot could not make clutch pedal in an emergency.

Carrying and lifting

2002 – Still manageable but not as easy as it used to be.

2017 – Hopeless. Left hand can’t hold anything and arm too weak to lift. Right hand needs to hold onto something to make falls less likely.

Falls

2002 – Very occasional.

2017 – Much better than 10 years ago, my worst time. Falls are better managed now.

Bladder issues

2002 – Urgency and frequency problems, treated by medication. Wore incontinence pads.

2017 – Same medication, occasional use of pads.

Current health

Today, I know I have progressive MS. Although it has taken a firmer hold over the years, it could be far worse, and for that I am grateful. My most recent MRI (in Russia) indicated that all my lesions are inactive. This means that, while the disease is still with me, it is not rampant.

I certainly feel that moving to Spain, which has a sunnier climate and laid-back lifestyle, has been positive — and don’t forget a vitamin D supplement.

MS still makes an infection far worse, and it is likely to kick in a bout of fatigue. But, heh, you can’t have everything.

This article, written by me, was first published by Multiple Sclerosis News Today.

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50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/disorder-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career 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. 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.

Delays in Seeing Specialists a Growing Barrier to MS Diagnosis and Treatment

Ian FranksIan Franks is Multiple Sclerosis News Today’s Chief Columnist and Patient Specialist. 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 Health & Disability blog at http://www.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.

 

To cope with serious diagnosis, grieve first

There’s no right way to grieve for the loss of anyone or anything. And that’s true for loved ones, close friends, beloved pets or even your own health when given a diagnosis of multiple sclerosis or some other disabling disease.

In all cases you are affected by grief; it is only natural. Ok, with a disease like MS that is not fatal in itself, you are not sad because of a death but soon after a neurologist gives you the news it’s natural to grieve for the healthy life you have lost.

Experts will tell you that grief is a five-stage process and I am not going to argue with them. However, it is important to realise that we are all different and that there is no right or wrong way to come to terms with a loss like this.

The five stages that I have mentioned are sometimes described slightly differently but, basically, are:

Denial: “No, that can’t be right. It’s not true.”

Anger: “The doctor took too long to diagnose it.”; “It’s (insert anyone here, even God)’s fault.”

Bargaining: “What if I had realised earlier that something was wrong?”; “What if I had gone to the doctor sooner?”; “What if I had lived a healthier lifestyle?”

Depression: “Why me? Why have I got this awful disease?”; “Why can´t I (do this or that)?”

Acceptance: “I may have this disease but I am going to live the best life that I can.”

MS_DiagnosisWhen you first find out that your symptoms and test results add up to a diagnosis of MS, it can be hard to grasp the import of the words.  Multiple sclerosis is a term you have probably heard but don’t know much about; “didn’t Mary have that? She was in a wheelchair.”

In my case, probably because I was relieved to know what was wrong, I skipped the first four stages and went straight to acceptance and then to learning more.

Talking of learning, as soon as you can, and again this is different for everyone, it’s time to find out more about MS and the good news is that there are plenty of sources of authoritative information on the internet

If you haven’t slipped into a black pool of suffering and despair, it’s now time to learn to cope with your abilities.

“Abilities? Surely I need to cope with my disabilities,” I can hear you say.

No, you don’t. You really need to focus on what you can do and how to do it. Yes, of course, remember good times from your past but accept that is now the past. It is now time to look to the present and future without fear but with planning.

For example, if you decide to move, you might want to consider choosing a bungalow or ground floor apartment; you may want to think about a level access. You might want to move to a property that has a bathroom that could be converted to a wet room.

Even if you can walk unaided now, you may want to consider moving to somewhere that could be easily adapted to enable wheelchair access. You may never need it but forward planning is best. An occupational therapist once told me that, when planning home adaptations for someone with a disability, she is not allowed to work on the current level of the person’s ability but has to think what it could be like 20 years ahead.

 

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MS diagnosis – It’s normal to grieve

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Reading a great article It is normal to grieve after MS diagnosis by Teresa Wright-Johnson1 in Modern Day MS, and seeing that depression was part of her grieving process, reminded me of two things.

First is that grief is ok. Whatever you are grieving about, whether it is the loss of someone close to you, or a pet that was part of your family, or the projected loss of your future through the diagnosis of MS or another chronic illness, it is a natural process. But, although there are several recognised steps said to be involved, the most important thing to remember is that all grief is personal. Don’t let anyone tell you that you have to do this or that. Everyone grieves in their own way; no need to feel guilty, you do it your way.

Secondly, before moving to Spain last November, I used to belong to the MS Register2 which asks people like me to provide information on life with MS in the UK. Some of the regular questionnaires were about physical aspects such as mobility, balance and so on. But others were about mental states including attitudes and depression. Now, here, I must add that my description of MS Register is an extremely simplified one; there’s much more to it than that. So, if you live in the UK and have MS, I urge you to join. Anyway, my point is that the Register includes questions about your happiness, your ability to laugh and enjoy things as well as depression itself.

In her article, Teresa readily admits that depression was part of her grieving process. She writes:

Depression has become a familiar foe. We travel together more often than I am comfortable admitting. Depression is a bandit and has the capacity to steal hope and joy. Both are needed in order to fight adversity. Reflection became a major component in my life. It felt as though I watched my entire life pass by. I couldn’t stop thinking about who I used to be before my diagnosis and I longed for the loss of the woman I was before multiple sclerosis.

At times, it feels as though my life took a wrong turn down a one-way street with no road leading back to my original, vivacious and authentic self. The longing I felt and still feel at times is overwhelming and often inexplicable. It’s ironic how you can be surrounded by tons of people and still feel alone, fighting a battle only you know exists.

I must have been very lucky as, so far at least, I have not been depressed in the 14 years since my diagnosis with MS. Yes, occasionally I get frustrated that I cannot do something – but not depressed. Whatever is the future is just that, the future. I won’t worry now about something that, hopefully, may never happen.

 

 

1 To read Teresa Wright-Johnson’s full article in Modern Day MS, follow this link: http://moderndayms.com/

2 If you have MS, live in the UK and would like to know more about MS Register, follow this link: https://www.ukmsregister.org/Portal/Home