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News and Opinions about MS, Health & Disability

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

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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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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‎Self-advocate: Take control of your own treatment

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

 

 

 

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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.

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Neurologists’ difficulty with HSCT for MS

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.

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Remembering life before MS diagnosis

hospital bangor hospital walton                        Gwynedd Hospital, Bangor, and the Walton Centre, Liverpool.

Just the other day, someone asked me what my life was like before I had MS – to which I replied that I had the illness some 25+ years before it was diagnosed in the spring of 2002. I asked her what she wanted to know and she said all of it.

Here’s what I told her:

I was diagnosed with grand mal epilepsy in 1972 after suffering my first seizure in the newspaper office where I worked as a reporter. No trouble knowing what it was as my brother, 11 years older than me, had had it for many years. He was more susceptible, though, and had many seizures until one that led to his death at the age of 48. On the other hand, medication has mine completely under control and free of seizures since 1976.

In 1974 I contracted glandular fever, a horrible and painful encounter that I would never want to experience again. Apart from those, and the usual childhood illnesses of measles, chicken pox and mumps, I was generally fit. I played hockey (field) for a club team on Saturday afternoons, refereed football (soccer) matches on Sunday mornings and, in the summer played for a cricket club on Sunday afternoons.

My first symptoms, at least those that were obvious to me, that something was not quite right were in 1983.  At the time I lived in London and, one cold Sunday morning in January, I was standing outside a market when I noticed that my right foot was cold as it should be – but that my left could not feel the cold. I also noticed some ‘pins and needles’ in my left arm and leg.

As one of the company benefits was private healthcare, I consulted the company doctor who arranged some consultations for me in London’s Harley Street, renowned for its concentration of private doctors.

After a couple of consultations and a lumbar puncture (spinal tap) that proved negative, I was advised not to cross my legs or lean on my elbows. I still don’t.

logo scoutlogo clear st john copyLife went on. I spent 10+ years as a volunteer leader in the Scouts followed by another 10 as a volunteer with St John Ambulance.

My left leg began playing up in around 2000 and in early 2002 I also realised my left leg could not be lifted as far as my right. I went to my GP who referred me to our local hospital at Bangor, North Wales, and soon was in the care of a consultant neurologist. Lots of questions and answers, a visit to the Walton Centre specialist neurology unit in Liverpool and, finally, an MRI scan.

You can read about the next stage in a permanent page on my website: D-Day: MS diagnosed http://50shadesofsun.com/?page_id=466

 

 

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