Battle to be taken seriously – dystonia.

natt37

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

Alex_Alumni

Thank you for sharing this with the community @natt37 and welcome. It's really important to be able to talk about the attitudes we face as disabled people.

I'm sure you're not alone in experiencing this, and that plenty of our members will have had similar experiences.

It can feel very negative and hurtful when the assumption is made that someone is "too young" to be disabled, or have certain conditions. It's especially frustrating when we don't feel heard or listened to. 

How are you finding things following your diagnosis? If you feel we can help support you with anything, then please ask  

natt37

@Alex_Scope Thank you for your response, I started the medication over the last few days. Too soon to notice a difference.
I work full time and with the tremor's being all over my body I find it difficult to do simple things, like wrapping presents. I am having to adapt and come to terms with becoming more dependant on loved ones (which is a struggle withing itself for me and them)
I was awarded a blue badge and hope to be successful in getting the disabled bus pass as my commute to work is quite long.
Still a journey ahead of me but I look forward learning from others within scope and maybe find some common ground.

Thank you 

L_Volunteer

I hope the medication helps when you are able to notice a difference @natt37. Though, I recognise this will take time. 

I can hear how you might find it difficult to do simple things, like wrapping presents, when you work full-time and have tremors all over your body. 

You are doing really well to try and adapt. It is never easy to try and adapt and is more a reflection of the difficult situation than you as a person. 

Really glad to hear you were awarded a blue badge and, hopefully, you will be successful in getting the disabled bus pass. 

Wishing you the best of luck with this. Please feel free to let us know how you get on and if you need any further support in the meantime. 

We are all here for you and listening to you. You don't have to face this, or anything else, alone if you don't want to.

Take care for now and we will look forward to, hopefully, hearing from you again soon 

natt37

@L_Volunteer thank you so much for your kind words. 

L_Volunteer

You are welcome @natt37. It is the very least you deserve. How have you been this week? 

natt37

@L_Volunteer good morning  Last day at work before the Christmas break, we return on the 3rd Jan. Looking forward to a break. I am working on drafting some training for my colleagues based around body language, which is something I have always been interested in. 
How has your week been? Are you doing anything for Christmas?
I do have a question - I received my disabled bus pass but I am very confused on when I can use it. On the letter it say I can use it from 9:30am onwards but then on the next line it says I can use it at anytime! 
I had to walk into work today because I was nervous to use it before 9:30am, now I have over done it and my tremors have kicked in. Just wondering if you have any idea, I have googled it but still mixed messages. 
 

Cartini

natt37 said:

@L_Volunteer good morning  Last day at work before the Christmas break, we return on the 3rd Jan. Looking forward to a break. I am working on drafting some training for my colleagues based around body language, which is something I have always been interested in. 
How has your week been? Are you doing anything for Christmas?
I do have a question - I received my disabled bus pass but I am very confused on when I can use it. On the letter it say I can use it from 9:30am onwards but then on the next line it says I can use it at anytime! 
I had to walk into work today because I was nervous to use it before 9:30am, now I have over done it and my tremors have kicked in. Just wondering if you have any idea, I have googled it but still mixed messages. 
 

Hi,

I have the concessionary bus pass and, as I understand it, I can use it after 09:30 to 23:00 Mon - Fri and anytime on a weekend and Bank Holidays in England only (assuming you are living in England).  The pass can`t be used in Wales or Scotland (again, assuming you are living in England).

The advice is to check if there are any variations if you go to another area of England from where you live.

Andy