Hello everyone, my name is Natalie, and I am 38 years old.
I will try to keep this brief and hope not to bore you.
For two years I have been battling with doctors just to be
taken seriously. 8 years ago, the people closest to me started to notice my
head would shake from side to side as if I was saying no over and over. I was
not aware of when it was happening, and I put it down to my eyes because one
eye is a little weaker than the other.
Two years ago, I started to notice tremors in my hands and
legs. Whatever was happening had obviously escalated and my body felt like it
was constantly vibrating.
Along with many other symptoms I was starting to get
concerned. The migraines, fatigue, weakness in my hands and legs.
I was referred to see a neurologist – I was spoken to like a
child and my age was used as an excuse not to be taken seriously. I felt like I
was in the headmaster’s office being told off and to stop exaggerating.
“You are far too young to have anything serious wrong with
you”
Now this excuse has been used before – I broke my ankle 6
years ago and a week after being in cast I was experiencing extreme pain in my
calf, I rang 111 and was told to ring the doctors, he said not to worry you
have only been in cast a week and you are too young to develop a blood clot.
The pain was so bad I took myself to the fracture clinic, a
nurse said exactly the same as the doctor but added we will give you a scan and
who knows you may prove me wrong.
I had two blood clots in my calf!
Back to the neurologist – I walked away in tears, he did not
put me down for any scans, just a blood test which I had already had, he did
not tell me what was causing the tremors (Yes, I should have asked but I was so
upset I just wanted to leave)
As I walked out, I found some leaflets on Dystonia and
decided to do my own research. I made an official complaint and asked for a
second opinion.
The second neurologist – it became obvious he knew the first neurologist
and kept referring to him and once again those sentences to not take me seriously
were used “you are too young”
He did however put me down for an MRI – 4 lesions on my
brain, one looks like it is spreading to another as if they are attached.
Third neurologist – This lady was pleasant to speak with and
wanted me to have lumbar puncture and was mentioning MS.
The results from this came back negative. My last
appointment with this lady I was diagnosed with dystonic head tremor, dystonia,
and chronic fatigue syndrome. I have started Botox injections in my neck every
three months. I was told at the very beginning of all this there was no
medication to help with the tremors in my hands and legs.
I asked her about this and her response “you are not an old
lady, if you were 50 years old, I would give you medication. You are not as bad
as some other patients; you are not struggling, and do you really want to be
taking lots of meds daily?”
I was lost for words, I thought I had finally found a doctor
that was going to help me, I was wrong.
I burst into tears, through my tears I explained I struggle
daily, dropping items all the time, struggling to walk because of the tremors in
my legs. I had that week cut and burnt myself. But she assumed because I was young,
I was coping well. I had explained all this before so why was I having to
constantly fight to be heard.
She finally gave me medication that helps people with
tremors but was reluctant. So, after being told there was no medication to help
suddenly, I was offered the choice of two different meds. Because of how upset
I was and how frustrated I was she did mention that 8 months to a year she may put
me in for another MRI. I hope this happens as it would be really helpful and interesting
to see if the lesions have gotten worse.
She mentioned she had a meeting where all the neurologists come
together and discuss each patient, my MRI and medical documents were mentioned.
She said she was overruled on my diagnoses. This I do not understand and guess
who was in this meeting? The first and second neurologist I had seen.
Brings me to now, I missed out a lot because I could write a
book about it all.
If you made it this far thank you for reading my story and I
hope no one else has to go through this but unfortunately it will happen, and a
change needs to be made.
Thank you
