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.
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.
4 thoughts on “Birthday presents: True diagnosis and a possible treatment”
I was Happy to see a sign of you &50 shades.There is a lot going on on HSTC(inNL ,they finally stating a new investigation &research with 10n people between 18-50)So when you are above 50 (like you &me)you can …..?I read your experience in Moscow.More people should read your story.Because people need to know that HTSC is not the final solution for everybody.Do not know what your solution is now?Amedication?drug?food?exercise?Meditation?All together? let me know, what works for you .
Take Care,have good spanish time.
Hi Inge, I fully support HSCT but I agree that some people,like me, cannot have that treatment because of health conditions completely unrelated to MS. What the solution is for me, we’ll have to see. Maybe some medication and physiotherapy.
I was diagnosed as PPMS from the beginning and I feel it is a correct diagnosis. I have been so disappointed to not have anything to help stop my progression as I slowly watch my abilities slip away. Inured is an immunosuppressent. I know it is used after transplants to help the patient not reject the transplanted organ. I also read it is used often for people with rheumatoid arthritis for the same reason, to keep the immune system from attacking the persons body. Please keep us posted as I would be thrilled to have something to slow this train wreck down!
Hi Glenda, I certainly intend to use 50shades to keep everyone up to date with developments.