Birthday presents: True diagnosis and a possible treatment

It was a strange day, well, certainly out of the ordinary!

I am talking about last Friday, November 8, 2019. First of all, it was my birthday (yep, now 67, getting on a bit) but it was also the day I had to see my neurologist for my regular MS check-up. Not the day I would have chosen for the appointment, but it was definitely one I couldn’t forget.

Prior to the trip to see the doctor, I had undergone a new MRI scan, and the full range of blood and urine tests.

The MRI scan confirmed that the lesions in both my brain and spinal cord remain inactive, as I was first told by Dr Fedorenko (pictured, left) in Moscow three years ago.

Laboratory tests on blood and urine proved to be normal – a description of me that my ever-loving wife Lisa finds somewhat unbelievable – with even vitamin D having recovered from ‘deficient’ to ‘sufficient’ with the help of supplements that the Spanish neurologist had previously prescribed.

We discussed my current abilities and disabilities, she asked me to demonstrate my leg and arm movements, and then she said I could have treatment to stop further deterioration but emphasised it would not do more than that.

Hospital Torrecárdenas, in Almería, where my neurology appointment took place,

Wait, what? For the very FIRST time since MS was diagnosed in April 2002, I was being offered a treatment which could slow its progress.

So, what was being suggested? Her first choice was Rituximab but I was unhappy as I know it has a high risk of unwanted side effects. Her second choice was Imurel (azathioprine), an oral medication more commonly used against lupus. I have not started that yet, so we’ll have to see where that goes.

Why such a long wait?

The question that remains is why it has taken more than 17½ years for me to be offered any MS treatment instead of just medications for pain, urine control and the like.

Well, let’s look at that!

Back in 2002, in the UK, the diagnosing neurologist said I had benign MS. Of course, back then I didn’t have the knowledge I have today. So, I didn’t know then that ‘benign’ is not a true type of the disease.

After three or four visits to the neurologist, he referred me to an MS specialist nurse, assuring me that Andy, the nurse, would arrange a neurologist appointment if I wanted one.

Visits to the nurse generally took the form of “why are you here?”, not a great start. Eventually, I asked to see a neurologist again but was told: “You had RRMS (relapsing), now you have SPMS (secondary progressive), there is no treatment, you don’t need to see a neurologist. He can do nothing for you.”

And that was that, except to say that the MS nurse is no longer in that position!

Later, while writing for Multiple Sclerosis News Today, I interviewed Dr Patricia Coyle (pictured, left) for an article for my column in the web-based digital publication. Dr Coyle is the Founder and Director of Stony Brook’s MS Comprehensive Care Center, in Stony Brook, Long Island, New York. She has several decades of experience with nervous system immune-mediated and infectious disorders. She has been involved since medical school with patient care and research focused on MS.

Anyway, with the interview over, we chatted about MS and she asked me about the symptoms I had experienced along with other probing questions. After all that, and without access to any of my records or test results, I could not expect her to make a diagnosis. However, she said from what I had told her, she believed I had PPMS (primary progressive MS).

That being said, on Friday I asked the question. What type of MS do I have? My neurologist, who does have my health records, replied without hesitation. “You have primary progressive,” she said.

So, it was a day when I finally found out my true diagnosis and was offered treatment for the first time. If not strange, it was certainly an extraordinary day.

50shadesofsun.com is the personal website of Ian Franks. 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. More recently, he was a freelance medical writer and editor for various health information sites. 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.

Late night police visit to pick me up

Police on your doorstep late at night is never a good sign. If their business cannot wait until the morning, it must be serious, right?

And, so, it happened. Just before midnight, a car pulled up and two uniformed officers came straight to our house.

No, we had done nothing wrong – they didn’t want to question us… or worse! There had been no accidents involving family or friends – they were not bringing us sad news. So, why were they here?

Well, as silly as it sounds, they had come to pick me up ……. off the floor.

You see, I had slipped while transferring from the sofa to my wheelchair, and ended up on the floor.

Despite continued and varied attempts on my part, I was unable to get up – so called 112. This is the emergency number here in Spain, equivalent to 911 in the US and 999 in the UK.

The operator was attentive, reassuring, and efficient. He listened to the facts, understood I have esclerosis multiple (multiple sclerosis), and, after ascertaining that I wasn’t injured and did not need medical assistance, said help was on the way.

And, just 15 minutes later, two Local Police officers arrived to pick me up. This they did quickly and effortlessly and were both courteous and friendly.

Talking of police in Spain, perhaps I should point out that we have three forces – the Guardia Civil, the Policia Nacional and the Policia Local.

The Guardia Civil (Civil Guard) is Spain’s conventional police force which is organised along paramilitary lines and controlled by the Ministry of the Interior. The Guardia has wide ranging responsibilities for national law enforcement and have the resources, powers and facilities of a normal police force. The Guardia Civil polices rural areas and smaller towns as well as the country’s highways.

The Policia Nacional (National Police) is the urban police agency of Spain. They are under the sole authority of Spain’s Ministry of Interior. Like the Guardia Civil it is a conventional police force, that polices cities and larger towns. It is also responsible for border security and issues residencia certificates for anyone wanting to become a resident in Spain and the essential national-registry identification number (NIE). It also undertakes the security of the Spanish royal family and the government. 

Policia Local (Local Police) is the force that is controlled by the relevant regional or local authority. It does not investigate crime but deals with minor matters. These include parking, local traffic control, bylaw issues, and, of course, picking me up off the floor. 

50shadesofsun.com is back

Hi

This is just a brief note to say that 50shadesofsun.com is up and running again.

I know there has been a lack of posts for a few months, but the site is back in business.

Regular readers will know that I live with multiple sclerosis, an unpleasant, unwanted, degenerative disease. It is oppressive and daunting but I am still the same person, positive and mainly cheerful athough there are times of frustration. But everyone gets frustrated sometimes, right?

The good news is that MS had nothing to do with this site’s short break, read more here.

The site has a new look, is easier to read, and has changed its host to WordPress, so costs have been reduced – which is essential. After all, 50shadesofsun.com is not designed to be a money-earner.

It is an independent site which is totally free of any commercial influences. And it will continue to be just that. I promise.

Freedom of the press, of which digital media is a part, is very dear to me. As such, I will continue to voice my opinions, whether to praise or criticise, to encourage or warn, Whatever they are, my opinions will be honestly held and be fair comment.

Watch this space!

Several floors up, fire alarm sounds – but you have mobility problems


Picture the scene. You are several floors above ground and the fire alarm sounds. You have not been informed of either a drill or a test and, so, the instructions are: evacuation.

Just one problem, you have mobility issues. You either use a wheelchair or can on walk down the stairs with great difficulty, in pain, and very slowly.

evacuation

Laura Kolaczkowski.

I was reminded of this situation by an article headlined This is Not  Drill, Maybe written by Laura Kolaczkowski, published by MultpleSclerosis.net. Laura is very well respected within the MS community in the USA. Also, she was one of my top columnists during my time as managing editor (columns) with BioNews. Let’s let her set the scene:

A recent event in a very tall hotel left me wondering why I was so hesitant as to what to do. It happened in Nashville, at the Omni Hotel, which I was staying at for the Annual Consortium of MS Centers meeting. The day I gave a presentation at 7 AM left me tired, and I returned to my hotel room early afternoon to take a brief rest.

I had just dozed off, slipping into a much-needed nap, when the emergency fire alarm rang. At first, I thought let’s ignore the blasting noise of the siren in my room. Perhaps if I pull the pillow over my head I can pretend this isn’t happening. Alternating with the alarm noise was a pre-recorded message ordering me to leave my room immediately and to evacuate the hotel using the closest stairway and a reminder that the elevators would not be operating.

Ignore the warning?

Having worked in schools for over 25 years, I don’t underestimate the importance of fire drills, but this time I was hesitant to evacuate the building. Why would I ignore this warning? Simply put, I was going to have to navigate the stairs, and a lot of them.

My room was on the 22nd floor, and I was immediately cursing my misfortune of having returned to the hotel instead of remaining at the conference, and my even worse luck of having MS and mobility issues. As I lay on the bed listening to the alternating message of pending doom to evacuate immediately and the ear piercing siren, I could only hope it would soon stop and it would be declared a false alarm. Alas, such was not the case, and not wanting to be the headline that read Woman Perishes Because She Ignored Warnings, eventually (as in about five minutes) I did the adult thing and made my way to the stairway and began the long descent to the ground level.

About the only touch of luck in this episode was the stairway was rather narrow, with a handrail on each side that I could grasp with both hands. There were few people in the building because this was mid-day, but most of the few folks who came behind me were kind enough to slow and ask if I needed assistance. Or maybe they just slowed because I had to let go of one of the handrails so they could pass.

No smoke or stampede

Smelling no smoke and not hearing a stampede of firefighters coming up the steps to rescue us gave me confidence that this was not a true emergency. and I told these folks to go on ahead. Telling them I would be fine, but I didn’t mind if I died alone in the stairway because I had lived a full life. A few caught the wry humor, but most were busy saving themselves and just went on their own way.

I remember similar humour a considerable number of years ago. The fire alarm sounded in our office block, but instead of an orderly evacuation, staff members were just standing around looking confused. Someone volunteered the information that we were waiting for admin department to confirm whether it was a real emergency. “Meanwhile, we can all burn to death,” one senior manager commented.

Back to Laura:

I survived the alarms and the stairway but heard from my family afterward that I did the wrong thing. They swear I should have called the front desk and asked for assistance to leave the building. I tend to be a bit more independent-thinking than this and it never occurred to me that there must be evacuation plans and assistance for people with mobility issues.

Lisa and I have enjoyed a number of cruises together and their emergency drills don’t tend to cater for those of us with disabilities. However, we were assured that they have special wheelchairs designed for going downstairs. Great to know they have plans to help the evacuation of people with mobility difficulties.

evacuation

An example of an emergency evacuation wheelchair. (Pic: Stlfamilylife.)

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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, so 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.

Give people with PPMS the treatment they need, MS Society campaign #SpeakupforMS

Blocking of a drug as a treatment for primary progressive multiple sclerosis (PPMS), making it unavailable for use by the UK’s National Health Service (NHS), is being challenged by the country’s MS Society.

And it has coupled its opposition with a call to arms – inviting everyone to #SpeakupforMS.

#SpeakupforMS

Holly (Pic: MS Society).

Holly, from the society’s campaigns community, lives with PPMS. She says: “The first licensed treatment for my condition has been denied approval to be available on the NHS in England and Wales.

#SpeakupforMS“Ocrelizumab (Ocrevus) has proven it can reduce the risk of disability getting worse for people like me with early primary progressive MS.

“But the National Institute for Health and Care Excellence (NICE) has rejected it because it says its (the drug’s) costs are too high for its benefits.

Need to #SpeakupforMS

“We need to speak up together.

“We need to tell Roche, NICE and NHS England: give people with primary progressive MS access to ocrelizumab.”

You can add your voice to the campaign today by signing the MS Society’s petition here

#SpeakupforMSHolly continues: “We‘ve been waiting a lifetime for an effective treatment for primary progressive MS. This decision is crucial.

“Right now, this is just for approval in England and Wales, but any delay in making ocrelizumab available could have knock-on effects across the UK.”

According to the society, every year around 600 people are diagnosed with primary progressive MS in the UK. 

Holly asks for your suppport.

She says: “Join us and #SpeakUpforMS.”

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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, so 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.

Paul pays tribute to dedication of staff as he prepares to leave Moscow HSCT centre

Although I have taken a break from writing during August, I just had to catch up with Paul Morrison who, earlier this month, travelled to Moscow to undergo HSCT for multiple sclerosis. The exact type of the disease is a matter of opinion, his neurologist says Paul has SPMS, but tests in Moscow indicate a diagnosis of RRMS. I know who I’d believe.

He is now approaching the end of his treatment and is set to return home next Tuesday, September 4.

dedi.cation

Paul in Moscow during the early stages of HSCT.

In the last three weeks, he has had his stem cells collected and stored, had chemotherapy to suppress his immune system, had his stem cells returned, and spent some days in isolation.

Of course, there’s more to it than that, they are just the high points. One vital part is the battery of tests carried out before the therapy can begin. And, in Paul’s case, thereby hangs a tale.

Paul explains: “They found 27 more brain lesions than my neurologist (at home), and a lesion blocking over 50% of my spinal cord.

“I have had a separate appointment with neurologist while in Moscow. And he said I am lucky that the nerve endings are not dead. This means I will have a  very good chance of regaining my walking function.”

Tribute to dedication

That such a discovery, was made in Moscow is a great tribute to the professionalism and dedication of Dr Dennis Fedorenko and all his team.

And that’s a view shared by Paul. Summing up his time in Moscow, he said: “From the cleaners who keep our rooms spotless and our spirits high, the nurses who take the extra time to make all the procedures so painless, to the doctors who have more dedication than I have ever experienced. Not to forget Anastasia Panchenko. And to have a protocol that is absolutely amazing.”

dedication

Claire Morrison.

Claire stayed at home with their three children and is looking to the future with hopeful anticipation. She said: “it has been a long hard road but we can finally start to see light at the end of the tunnel. It would not have been possible without the generous donations from family, friends, and strangers. Their kindness has overwhelmed us.

“Charlotte, Ben, and Alvaro are so excited to see their dad, and I am looking forward to Paul’s recovery, waving goodbye to the drugs and, most importantly, halting this dreadful disease.

“Fingers crossed, bye-bye MS. We are all feeling hopeful.”

Although not wanting to be a wet blanket, I felt the need to say a few words. I told Claire: “Recovery is like a roller coaster ride, Expect ups and downs. Don’t get dispirited.”

Claire replied: “Paul is in high spirits, so can’t wait for the next chapter. I will try to keep my spirits up during the recovery down times.”

Lisa and I will be meeting up with Claire and Paul once he gets back to Spain and is well enough to receive visitors. Watch this space!

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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, so 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.

Paul’s Moscow HSCT for MS journey begins

I had planned to take a break from writing this month, August being a slow news month that is well known among journalists as the silly season. That’s when minor stories are given major coverage, because of a shortage of stories of real substance.

Paul Morrison and his wife Claire.

However, I could not let Monday August 6 go unmarked.

Why? Because, after months of fundraising, it is the day when Paul Morrison flies to Moscow to undergo HSCT in his fight against MS. He goes with my best wishes for a great trip ad a successful outcome.

I first wrote about Paul’s story here, and since then, he told me last week, the income from his fundraising efforts had reached $45,000.

I plan to catch up with former Londoner Paul after his return to Spain, where he lives just a few miles from me. Watch this space for HSCT news from Moscow and future updates.

# # #

Unless anything happens that I feel must be highlighted, I’ll be back in September.

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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, so 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.