Feeling like your future is gone…until you find your saviour – Katy’s story of MS

Sometimes hearing someone else’s perspective or experience with your condition is all it takes to lift your spirits or give you the confidence you need to try something new.

We have decided to talk about Multiple Sclerosis this week and introduce you to one of the 2.5 million MS patients worldwide. Yes, there are millions of people out there who have faced the striking news “You have MS!”.

But what’s next? Tons of information on the web, doctors’ consultations, different treatments, and advice, depressive thoughts, etc. In the blink of an eye, your life can change and your goals, dreams, and priorities are forced to take different turns…all until you finally find your salvation that modern medicine has discovered.

In this article we’ll tell you about Katy Webster, an MS patient for 15 years now who shared with us how medical innovation changed her life.

Tell me about your symptoms before the diagnosis in 2003.

– I had hazy patch of blurred vision in one eye, then I had a patch in the other eye as well as numbness in one hand. For the first years, however, my symptoms were very mild.

What tests did doctors do to get to the diagnosis?

– After sharing my complaints with my GP, she referred me to a neurologist. Then, I went for Magnetic Resonance Imaging (MRI) and was diagnosed with early relapsing-remitting multiple sclerosis. I was really lucky to get a diagnosis after only 9 months from when my first symptoms appeared as I know that it takes some people years before their MS is diagnosed.

What was your reaction to hearing that you have this disease?

– I was quite positive, I am actually always positive about things, because worrying doesn’t help. My symptoms weren’t quite particularly bad for quite a few years. Then, on the 6th year when my symptoms got worse, it became harder…I was a bit depressed if I should be honest.

What do you mean by worse symptoms?

– My walking became worse, and my balance was terrible. Also, my speech over the last few years got worse but now it’s quite a lot better after the new treatment.

How did you share it with your family and friends? What has changed in their attitude since then?

– My mom was in the meeting with me when I received the diagnosis. Actually, she was more upset than me, she started crying. My friends have been very supportive. It’s important to have your loved ones by your side.

What innovative treatments have been offered to you and how did you decide what treatment to get?

– For a long time, I didn’t take any treatment, because my symptoms weren’t very bad. I was offered disease-modifying drugs but I didn’t go for them for ages. But then when I started to get worse, I started with Avonex. The side effects were horrible and it wasn’t very nice because of the weekly injections into the muscle that didn’t make me feel good at all. I switched to Copaxone which had similar efficacy, then I went for drugs Tecfidera and then the neurologist put me for Tysabri. But this all depends on how your body will be affected.

I am currently under *HSCT treatment (Haematopoietic stem cell transplantation) which definitely makes me feel better.

Can you share more about this HSCT treatment?

– The treatment is done under the NHS and approved by NICE. It is still fairly new so it is considered experimental for MS and is not very wide-spread. HSCT involves an intense chemotherapy treatment which aims to stop the damage MS causes by wiping out and then regrowing your immune system, using your stem cells.

What they do, they take your stem cells, they give you chemotherapy and they harvest your stem cells for 6 weeks, they give you aggressive chemotherapy. It turns out that it works for the majority of people and to my opinion, it is really cost-effective.

It is covered by the state but not everyone can have it though, they are quite strict on the inclusion/exclusion criteria to include you in the list (for example you need to have been living with the disease for less than 15 years).

How did you find out about this treatment?

– A friend was telling me about one of her friends who had this treatment in Russia where it cost around 40 000 GBP. I wasn’t sure it would work for me so I was referred to a consultant in a UK hospital who specializes in this treatment and who told me I fit the criteria for their program.

The treatment was already approved and I feel a lot better now, it changed my life completely.

Have you tried alternative therapies?

– Not really, but I’ve been doing physiotherapy regularly for some time after my symptoms got worse. Before that, for years after the diagnosis, I didn’t do anything alternative.

Have you considered participation in a clinical trial as an option for your treatment?

– Yes, but by the time I was ready to do it, the therapy was already approved. But I would have taken part in a relevant clinical trial previously.

Do you have a personal philosophy that has helped you to cope with having a chronic illness?

– Stay positive, there is no point in worrying ­– it could always be worse 🙂

What advice would you give to someone who has just been diagnosed with MS?

– There is a lot of resources online that could be useful, but sometimes they can make you feel worse. Be careful what information you are reading.

What is the worst thing about this illness?

– Feeling like your future is gone and you will just get worse and worse. I didn’t realize until I get this treatment that life can be better, I thought I was going worse and I have limited time on Earth, I felt depressed. I am feeling better now, my speech was worse, it is much better now. My balance is better.

Are you missing something in your daily life during all these years with the condition?

– I stopped driving because of my double vision. I miss driving now.

Can you tell us your opinion about FindMeCure platform and what we do?

– It’s a great idea for people to be able to find clinical trials that may help them.

If you found this interview useful for you or someone you know who has MS, you can read more about Haematopoietic stem cell transplantation on the webpage of Multiple Sclerosis Society UK. It all became reality because of clinical trials and patients willing to support research.

Medicine is constantly working to find better and more effective therapies for patients. Actually, there are 376 clinical trials for MS happening worldwide now. You can explore what is being done by researchers at FindMeCure.com or by hitting the button below. 

Stay tuned with our forthcoming blog articles as we’ll further tell you more about MS and innovations in the field.

Interview by Daniela Shikova