neurologist

Birthday presents: True diagnosis and a possible treatment

/ Ian Franks / 4 Comments

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.

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

/ Ian Franks / Leave a comment

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.

Shocking: Neurological misdiagnosis fears prompt patient reviews

/ Ian Franks / Leave a comment

People living with multiple sclerosis, and other neurological conditions, are among thousands of patients being recalled for case reviews. They were all treated by consultant neurologist Dr Michael Watt and the reviews have been triggered by fears of possible misdiagnosis.

I am shocked and horrified that the reviews are necessary but delighted that the powers that be are taking action. At least they are not letting the fears and concerns to be swept under the carpet.

The reviews involve more than 2,500 patients treated in Belfast, in Northern Ireland, UK.   They were all diagnosed with neurological conditions that, as well as MS, include Parkinson’s Disease and Motor Neurone Disease.

It is the biggest patient recall in Northern Ireland’s history. 

Those concerns arose from an independent review of patient notes by Belfast Health and Social Care Trust and the Royal College of Physicians. Health bosses have not been ruled out that the investigation could, at some point. cover people who have died under his care. Besides working for the trust, Dr Watt also practised at two private health clinics.

Other doctors raised concerns

reviews

Dr Mark Mitchelson.

Chair of Belfast Trust’s neurology division, Dr Mark Mitchelson said: “I fully understand this will cause significant anxiety to many patients and their families and for that we are truly sorry. Other doctors raised concerns with the Trust regarding the care and treatment provided by Dr Michael Watt to a small number of patients.”

The hospital is setting up additional clinics, and is aiming to see all recalled patients within 12 weeks. Belfast Trust says it has contacted every patient it wants to review.

Anyone who may be worried and is seeking further support may call an advice line. The freephone telephone number is: 0800 980 1100 and lines will be open 9am – 9pm during the week and 9am – 5pm at weekends.

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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.

Meeting with neurologist in Spain, after MS Nurse blocked me in UK

/ Ian Franks / Leave a comment

People with serious illnesses need specialist medical care. That may be stating the obvious but my experience leads me to believe that it is not always true.

I received my diagnosis of having multiple sclerosis in 2002 in the UK and began by seeing a neurologist every six months. However, after just a couple of appointments, I was referred to an MS Specialist Nurse. At that time, the neurologist said that if I needed to see him again, the nurse would arrange it.

Sadly, that tuned out to not be the case. When I did ask my MS Nurse to arrange for me to see a neurologist, the nurse asked me why. He said I used to have relapsing MS and now had secondary progressive, there was no treatment, so he saw no point in me seeing a neurologist.

Since moving to Spain, two years ago today, seeing a neurologist has not been on top of my ‘to do’ list.  Six weeks ago, though, I mentioned to my GP that I’d like to see one – and received an immediate referral.

Neurologist specialising in MS

Following an initial meeting on October 30, yesterday I had my first session with a consultant neurologist specialising in MS. This took place in Hospital Torrecárdenas, in the city of Almería.

deficiency

Hospital Torrecárdenas, Almeria.

There, in addition to my medical history, Dr Carmen Muñoz had the results of last week’s MRI scan and blood tests. And, on top of that, I was able to provide her with the MRI scans and full medical report produced by Dr Denis Fedorenko when I spent a few days at the HSCT centre in Moscow during October last year.

Regular readers may remember that, last year, Dr F told me that my lesions were inactive and that I was vitamin D deficient. From that point, I began taking a vitamin B supplement every day.

Yesterday, Dr Muñoz compared the new scans with last year’s. The good news is that there is no change. Not the same as far as vitamin deficiency, though.

True, the vitamin D level has improved slightly but it is still deficient. Added to that, now I am deficient in vitamin B12 too. So, from tomorrow, my vitamin D supplement dose increases significantly – and I also begin to take a B12 supplement.

Vitamins and deficiency

I decided to look at what deficiencies of the vitamins means.

Vitamin D helps regulate the amount of calcium and phosphate in the body. These are essential to keep bones, teeth and muscles healthy.

A deficiency of vitamin D can lead to bone deformities, such as rickets in children, and bone pain caused by osteomalacia, a softening of the bones, in adults.

Vitamin B12 has a crucial role in the production of red blood cells and DNA, as well as the functioning of your nervous system.

The effects of vitamin B12 deficiency can include: pale or jaundiced skin; weakness and fatigue; sensations of pins and needles; mobility problems; mouth ulcers and inflamed tongue; breathlessness abd dizziness; disturbed vision; mood changes; and, rarely, a high temperature.

Of course, many of these are common in MS regardless of any issues with vitamin B12.

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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.

‎Self-advocate: Take control of your own treatment

/ Ian Franks / Leave a comment

self-advocate

Becoming a self-advocate may be the best way of getting the treatment any MS patient may want.

Stem cell transplants are known as aHSCT or just HSCT, and interest in them as a therapy for MS has never been higher. First there were stories from the annual meeting of the Consortium of Multiple Sclerosis Centers at the beginning of June. Then, a week later, The Lancet published the results of the first clinical trial to prove long-term benefits of what has been a controversial treatment.

This transplant therapy is not claimed to be a cure but, having read the report and acknowledging it has dangers (as do Disease Modifying drugs), I’d say it is the nearest thing we have to a cure at the moment. But I have to emphasise I am not a doctor – my opinion is that of a career journalist who happens to live with MS.

Many neurologists seem reluctant to embrace the new therapy, possibly because it is not led by their speciality in the field of medicine. Instead it is in the hands of haematologists and oncologists because, after all, it started as a cancer treatment and does include high doses of chemotherapy.

For that or for other reasons anyone with MS may have difficulty in getting their neurologist to agree to put them forward for this process even if the talk today is all about ‘shared’ decisions.

No, there is absolutely no way that I am going to knock shared decisions – after all, that means the doctor and patient have agreed on the best way forward. If that is the case, that is great – but what if agreement is not reached and they have shared disagreement instead?

Well, people with MS have to be their own self-advocate. They need to remember that this unwanted disease is in their bodies; they have the ultimate right to determine how it should be treated.

Not everyone with MS will be suitable candidates for HSCT but, if they are, then no neurologist on Earth can be allowed to stand in their way.

With this in mind, I was interested to see the following on one of the social media:

We should all present our neurologists with a letter, stating that while they withhold HSCT from us, we consider them personally responsible for any further disease progression. Here is a first draft, for comments please? Imagine if 100,000 of these were presented!

LETTER TO NEUROLOGIST,

cc ASSOCIATION OF BRITISH NEUROLIGISTS

Dear Dr Blah-Blah,

As you know my next appointment with you is scheduled for xx/xx/16.

I am writing to advise you in advance, that I would like you to assist me in pursuing a Haematopoietic Stem Cell Transplant. I attach details of recent submission by Professor Paolo Muraro, together with commentary by Professor Gavin Giovannoni, relating to HSCT for MS being the best way to achieve no evidence of disease activity (NEDA). I am no longer prepared to take inferior disease modifying medications.

My EDSS is currently measured at x.x and I feel it is only fair to advise you, that I will be holding the neurolgogy profession including yourself, fully accountable for any further disability that accrues from this point forward. To aid with analysing any increased disability, I have today been independently filmed walking 20m, which will then be compared to future timed 20m walks.

Should you wish to bring my next appointment forward, I believe we would all consider that to be a step in the right direction.

Yours sincerely,

MS Patient

The content of that letter has been reproduced word for word and, while it may not be how I would phrase it, it makes its point – and is a great example of the self-advocate that is so needed today.

 

Related articles:

Stem cell clinical trial is real, not ‘false hope’    June 12

Long-term clinical trial Proves stem cell therapy that destroys immune system Does Stop MS    June 10

 

 

MSNT strapline copy

 

 

 

Getting to see neurologist proves not so simple

/ Ian Franks / Leave a comment
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.

Neurologists’ difficulty with HSCT for MS

/ Ian Franks / 4 Comments

hsct process

Concerns are often expressed about difficulties in getting approval or agreement of neurologists for patients with multiple sclerosis to have Autologous Hematopoietic Stem Cell Transplant (HSCT).

Reports have been published via social media of neurologists telling people with MS that the treatment would not benefit them as they have the ‘wrong type’ of MS – and others where the doctors do not know enough about HSCT and some who even refuse to look at accumulated evidence offered to them.

Why is this? Well, it’s sad but maybe the real problem is that the stem cell therapy is not neurology-led.

Then others, and here it is necessary to include many national MS charities, point out that HSCT is unproved and there is not sufficient scientific evidence that it will have any long-term benefit.

MS Australia says: “The current issue with this treatment is it is still in its very early stages. It is an intrusive procedure with many high-risk steps and includes high doses of chemotherapy which can knock people around considerably. Currently, there is not significant evidence to determine if the treatment is safe, or that identifies which people actually benefit from this treatment – as results are varied.

“The pleasing thing is large scale international studies are underway and there is one clinical trial currently running in Sydney that will help discover more information about HSCT.

“Our colleagues at MS Research Australia are also compiling a registry of people undertaking HSCT treatment in Australia so that we can map their experience with the treatment. To date this registry shows less than 40 people with MS have received bone marrow transplants to treat active, highly aggressive cases of MS. The procedure has been carried out at a number of sites, including sites in Perth and Sydney.

“Internationally, only a few hundred patients have been treated this way. However, the outcomes have still been mixed. There are some who have undertaken the treatment who have seen no benefit.”

MS Australia says that it ‘does not oppose’ the treatment but describes HSCT as ‘high-risk, unproven treatment’, that is currently only considered by some doctors and hospitals on a case-by-case basis for those who have an early, aggressive form of MS that is resistant to all other treatments.

In the UK, the MS Society says: “Although only trialled in a small number of people so far, HSCT has shown some success, particularly in aggressive forms of MS. We are funding a range of research projects, some of which are co-funded with the UK Stem Cell Foundation.”

In the USA, the National MS Society says: “At present, there are no approved stem cell therapies for MS. Stem cell therapy is in the experimental stage, and it’s important for people to have the best available information to understand this exciting area of research and make decisions related to this complex issue.

It adds that HSCT is being investigated in Canada, the United States, Europe and elsewhere, including an international clinical trial of this procedure being led by Dr. Richard Burt of Northwestern University in Chicago.

Initial results from the five-year multi-centre HALT-MS (High-Dose Immunosuppression and Autologous Transplantation for Multiple Sclerosis) trial suggest that autologous hematopoietic stem cell transplantation may be a highly effective treatment for patients with aggressive relapsing-remitting MS.

However, that goes against the experience of those with progressive forms of MS who report positive results following HSCT in Russia, Mexico, Israel, the Philippines, and other places with reputable clinics offering the treatment. You only have to look at the various HSCT groups on Facebook to see that for yourself.

We also need to remember that HSCT is not a cure, nor is it claimed as one. It is used to stop progression of the illness, so it gets no worse – although, in some cases, remarkable improvements have been found.

With neurologists seeming to be reluctant to support or recommend this therapy, it is more important than ever for people with MS to remember that they, not neurologists, have the final say about treatments that they receive.