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.

MRI – Keeping calm and relaxed in the tunnel

MRI scanners and, in particular, how to cope with them, is somethi.ng t hat concerns many people as they prepare to be scanned.

mriGoing into the scanner’s tunnel can be intimidating in advance and frightening when inside. Never mind that it is open at both ends, the closeness of the tunnel can soon put your brain in overdrive. You can worry about the nearness of the tunnel and about getting out.

Anyone who, like me, has multiple sclerosis will have to cope with MRI scans, perhaps every few months. Does it get easier? For some, yes. But not for all.

People who experience claustrophobia might never get used to the enclosed MRI scanner but the good news is that there are now ‘open’ MRI machines that give the person being scanned a feeling of openness and can reduces stress. However, open scanners are not available everywhere,

My own experience has been limited to the more traditional closed scanners.

To see or not to see

Operators of these machines sometimes place a mirror so that the patient can see out of the tunnel. That may help alleviate the concerns of some but not all as they still see out via the tunnel. Others may prefer to close their eyes and practice relaxation techniques to help keep themselves calm and peaceful.

The Maximov centre in Moscow.

My most recent MRI scan took place almost nine months ago during a short stay at the AA Maximov centre that provides haematopoietic (hematopoietic = American spelling) stem cell transplantation (HSCT) in Moscow.

There, I felt totally at ease when I was slid into the tunnel. As there was no mirror, instead of looking at the tunnel’s ‘ceiling’ only a few inches away I chose to close my eyes and ignore what was going on around me.

Now MRIs are not the quietest machines in the world, as anyone who has been scanned, can tell you. But my relaxation was so effective that I fell asleep. I tuned out the noises of the scanner, drifted off to sleep only to wake myself up by snoring. And not just once.

MRI noise

Why are MRI scanners so noisy?  The California Institute of Technology explains: “An MRI is noisy because its magnetic field is created by running electrical current through a coiled wire—an electromagnet. When the current is switched on, there is an outward force all along the coil. And because the magnetic field is so strong, the force on the coil is very large.

“When the current is switched on, the force on the coil goes from zero to huge in just milliseconds, causing the coil to expand slightly, which makes a loud “click.” When the MRI is making an image, the current is switched on and off rapidly. The result is a rapid-fire clicking noise, which is amplified by the enclosed space in which the patient lies.”

Somehow, despite all that noise, I managed to enter the world of dreams three times during more than an hour in the machine. It seems I was relaxed.

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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 Features Writer with Medical News Today. 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.

Loss of spinal nerve fibres not only cause of disability in MS – new research

Disability from multiple sclerosis may be caused by more than loss of spinal nerve fibres, new research shows.

This could mean the use of MRI scans to predict disability from MS may not be as reliable as thought.

The research questions the belief that, in MS, loss of spinal axons, or nerve fibres, is the key factor in levels of chronic disability.

This has led to the wide use of MRI to measure the cross-sectional area of the spinal cord in order to predict disability. But researchers from Queen Mary University of London have now sampled spinal cords of 13 people with MS and 5 healthy controls. They found that spinal cord cross-sectional area is not a good predictor of axonal loss.

spinal cord

Klaus_Schmierer.

Results of the research “Axonal loss in the multiple sclerosis spinal cord revisited” were published in Brain Pathology on May 7.

Lead researcher Klaus Schmierer said: “The lack of association between axonal loss and spinal cord cross-sectional area significantly changes our understanding of chronic disability in MS.

Disability imbalance between MS and spinal cord trauma

“The nature of the spinal cord needs to be appreciated as a highly organised and largely autonomous network . We need to identify other factors over and above axonal loss. Factors that determine the collapse of the spinal cord network and lead to the functional deficits seen in MS.

“In spinal cord trauma, people with less than 10% of axons, may still be able to have lower limb movement. But MS patients with up to 40% of their axons retained are almost invariably wheelchair-bound, as shown in our study. So, there is clearly something happening here which we’ve yet to understand.”

Finding other factors causing the chronic disability seen in MS, it could help identify targets for new treatments.

The team’s preliminary results indicate the loss of synaptic connections in the spinal cords of people with MS is substantial. It is possible that further research could determine is this is the missing link that is driving disability.

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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, who 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. Diagnosed with MS in 2002, he continued to work until mobility problems made him 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. Besides that, he is a keen advocate on mobility and accessibility issues.

HSCT Plus Six Months: Daily Walks and a New MRI

From Russia with Test Results for HSCT

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Regular readers of this column will know that I am convinced about the efficacy, reliability, and safety of Hematopoietic Stem Cell Transplantation (HSCT) as a treatment for MS. In fact, a few weeks ago, you learned through this column that my decision was made; HSCT was for me.
wheelchairs

Hey, that’s me in my new wheelchair in the HSCT centre in Moscow, with Dr Fedorenko and assistant Anastasia.

Dates were agreed, flights were booked, special assistance was arranged, and coach travel from my home to the airport was organized.Knowing that there are other health conditions that might make the treatment impossible, or ill-advised, I spoke with Dr. Denis Fedorenko, head of HSCT therapy in Moscow, by phone and asked his opinion. He asked me to travel to Russia so he could oversee four days of tests before making a final assessment.

But that was not enough. I had to obtain a visa from the Russian Embassy before traveling; and as a British citizen living in Spain, that was no easy matter. But, eventually, it was granted and I was set to travel.

The plane touched down at Moscow’s Sheremetyevo International Airport close to 5.15 a.m. on Monday of last week, where a hospital car and driver were waiting. Learning that this was my first time in Russia, he whisked me on a diversion into the city itself, showing me Red Square, the Kremlin, and the Bolshoi Ballet. “And that,” he said, indicating a nondescript office block, “used to be the headquarters of the KGB.”

I didn’t ask about its current use.

Pre-HSCT tests

That day was the start of the most exhaustive and exhausting series of medical checks in my entire life. They included MRI scans of my brain and spine, as well as my chest and abdomen, and ultrasound scans of the veins in my legs.

Decision day was Thursday, when Dr. Fedorenko came to my room with all the results. The key findings were:

  • I have progressive MS, but all lesions in both my brain and spine are inactive
  • My prognosis, according to Dr. Fedorenko, is that the MS is unlikely to progress and, if it does, it will only do so slowly
  • My heart (I already knew had an irregular heartbeat, or atrial fibrillation) is totally OK on one side and, overall, pumps 10 percent less blood than it should
  • My lungs operate at 90 percent capacity
  • My vitamin D level is below the usual scale

Based on the fact that my MS is inactive and that chemotherapy could pose a threat to my heart, Dr. Fedorenko took the totally understandable decision that HSCT is not for me.

“In your case, with the MS not progressing, the benefits of the treatment do not outweigh the risks to your heart,” he said.

In short, as MS progression is currently stalled with inactive lesions, for which I am grateful and in a happy place, I don’t need HSCT.

This article, written by me, first appeared on Multiple Sclerosis New 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-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.

Home from Moscow, strangely contented

Yesterday was a long and tiring day, returning home to the sunny and south of Spain from the colder temperatures found in Moscow.

With the help of two members of the support team, I left the hospital at 7am, which was 6am in Spain, eventually getting home at 10.30pm. Believe me, 16½ hours of travelling and layovers is a tiring experience which is probably why it was gone midday before today woke me from my slumbers.

Being in Russia, in the AA Maximov HSCT clinic, was an experience I am glad to have had, but nothing comes up to the delight brought about by being home again. Home with Lisa, the love of my life.

In the clinic, bonds are quickly established between patients at various stages of the process and, even though only there for assessment, I immediately found myself welcomed as one of the community.  And I now have new Facebook friends so we need never lose touch.

MRI brain scan. This is a stock picture,not one of mine,

MRI brain scan. This is a stock picture,not one of mine.

Several people have sent me comments since my assessment result was revealed – that I would not be accepted to have HSCT. Some have said how sorry they are that I cannot have the treatment; others have expressed their pleasure that the MRI scans showed that my lesions are inactive and that my future is looking good according to Moscow’s Dr Fedorenko.

So, how do I feel? Strangely, contented.

The fact that my lesions, which exist in both brain and spine, are inactive is great news in itself. And to have Dr F tell me that my prognosis for MS is no, or in the worst case very slow, progress is something that I had never dreamed could happen.

So, in short, I am in a good position.

On top of that, I had so many checks on various internal organs that I know now exactly what is wrong in much more detail than before.  The scans, x-rays and other tests – also show that there is nothing unwanted, nothing that should not be there.

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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-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.

Moscow calling – day three

Wednesday marks the halfway point in my journey of tests and clinical assessment at the AA Maximov centre in Moscow. Of course, I am looking forward to getting the results, although the MRI scan results are known already.

The programme of tests is not complete yet but most are now behind me.

Yesterday was the most intensive day of the week, with tests on my urine and blood, lungs, x-rays, ultrasound and the 24-hour cardiac monitor that was removed in my room this morning before I even got out of bed.

My left knee gave way last night, in my room, meaning that there was a close encounter with the floor. This is nothing unusual for me but it caused consternation among the staff, one of whom was just passing my door when It happened. Even though it was nothing out of the ordinary for me, it was still the first thing that Dr Fedorenko talked about when he visited me this morning.

mriMore importantly, part of that discussion concerned the results of my MRI scan from two days ago. It’s important to remember that this was the first such test since my diagnosis 14 years ago.

The scan showed lesions, some quite large he said, but added that they are not active.

Active lesions, those that are just forming or expanding, can cause a wide variety of symptoms, depending on where they are located and how big they are. Inactive means exactly that, they are not growing and so the MS symptoms should not be increasing nor worsening significantly.

I know that results of the MRI scan mean that HSCT is unlikely for me, as active lesions are almost always a prerequisite of the treatment. Still, news that there are no active lesions needs to be looked at positively.

Dr F is not expecting my symptoms to deteriorate quickly or at any time soon.

Another positive outcome of this series of tests is that I will have received the most thorough, most comprehensive, health check of my life so far. I say ‘will have’ because they are not finished yet.

More news tomorrow.

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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-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.