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.

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.