Beth Lanario
This story started in 1996...
My husband told me that when I walked I was slightly dragging my left leg. I hadn’t noticed. I was a busy working mum, with 7 year old son. When not working, I was a taxi driver to as many sports clubs as possible with my son.
I had noticed that I had pins and needles in my feet, hands and face, painful hot pins and needles that could last hours.I also started dropping things. I put it down to being tired and had always been known in my family as clumsy, always walking into things and dropping things…
One day, sitting at my desk I had a sound in my ears like white noise and some pain. I went to my GP thinking I might have an ear infection and told him about these symptoms. He asked me to close my eyes and walk towards him. I promptly fell over. He asked why I hadn’t gone to see him earlier. Ican remember saying:
"I thought you would just say I was 'weary' like any young working mum."
He said in his opinion my balance organ was compromised and I needed to be referred for further tests.
Not long after this came my first hospital admission as my walking deteriorated and I couldn’t see very well. During this admission, I couldn’t walk, couldn't see and had extreme headaches. They looked for cancer of the spine and stomach migraines.
I remember a lovely ward sister sitting next to my bed and asking me to describe all my symptoms. Very quietly she said,
"I think you have MS, your symptoms are the same as my husbands and he has MS."
This was the first time I heard the name Multiple Sclerosis.
Over the next 5 years, with an admissions to a number of hospitals, worsening symptoms and increasing disability, I went from specialism to specialism. Words were thrown out like “mad cows disease" because of my gait and it was at the time of the “mad cows disease crisis” in the 1990s. "Syphilis" was also mentioned, although I had only ever had one sexual partner my husband, plus "Lyme disease", "Vials disease"….
Each time I asked about MS it was dismissed saying my lumber punctures were clear (one of the tests for MS). Although I knew my MRI scans showed swelling in my brain. I was told again not MS.
As I started to research MS, I was amazed at how difficult it is to diagnose. No one test, no one blood test proved it. Each consultant refused to listen as my symptoms worsened, including extreme pain, even when I pointed out that research showed that 5% of people with MS aren’t diagnosed by lumber punctures, brain scans etc.
Why couldn’t I be one of the 5%….?
My lowest moment came when a consultant neurologist said I needed to stop wasting people's time and start therapy as this was clearly all in my mind and I needed to face up to the fact!
I fought this. It made absolutely no sense! I was a qualified Mental Health Social Worker I knew the difference between psychosomatic conditions and what I was experiencing.
My GP was amazing and was with me from the beginning. He too was convinced I had MS.
After about 10 years of constant questions, referrals, tests, differing medication...
I was finally diagnosed with MS.
As I look back on my journey and now having had to retire due to my increasing disability and worsening of symptoms, I think like Tilly, it would have been easy to give up in the face of the mighty medical system and not fitting into their tick box diagnoses but due to my job and knowledge of the system and my voice I could advocate for myself and not give up.
For all those alone, maybe without a supportive network, unable to advocate for themselves it must be an even daunting journey than the one I have been on.
Now on a cocktail of opiates to manage increasing pain and other horrid symptoms which now affect my daily life, I am just thankful that I fought that I wouldn’t take “it’s all in your mind". Now I have a supportive GP, access to pain management and at least the chance to learn to manage my condition so it doesn’t manage me
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