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Hi Everyone!

Hi everyone! My name is Carlo Nieddu, I’m new to the forum so thought I would introduce myself. I don’t really use forums so this is quite new to me. I live on the Isle of Wight and have all my life. I’m 25.

I was diagnosed with MS in October last year after a long wait from my initial appointment with a doctor. Although at the time it felt like a long wait for myself, family and friends, reading other people’s journey to diagnosis I appreciate that mine was actually quite quick. I was referred to the neurologist in March but my appointment was not until the end of July. As people say you are just in limbo waiting, not only for me but for my family and friends too. I was pretty convinced though that I would end up being diagnosed with MS having researched it a lot, reading the MS Society website, this forum, the MS Trust website, anything I could find on MS.

When I saw the neurologist he told me that he thought it was likely that I did have MS and I was booked in for brain MRI scan in September. Following the scan I had another appointment with the neurologist in October where he gave me the results of the scan which confirmed there were lesions on the brain. The emotion I felt the most was probably relief because I knew I had MS and I felt there was clearly something wrong so if it wasn’t MS what else could it of been?! I was diagnosed with highly active relapsing remitting MS.

I started treatment very soon afterwards in November. I go over to Southampton once every 4 weeks for Tysabri infusions. I think this has been effective as I haven’t had any notable relapses since I started it. The nurses are all really nice and from my experience I would recommend it. I also recently started taking propranolol for the tremor in my arms and hands.

Ever since I was 16 my friends would laugh at me for having shaky hands but I laughed too and didn’t think anything of it really. My family would comment on it too but they and I just put it down to drinking too much. My first notable symptom was in November 2013 where I had optic neuritis in one eye. During this time I noticed that when I was getting drunk, my walking was becoming very difficult. Some of my friends would notice but I would try to brush it off. It was weird because it wouldn’t last too long. Then from the start of the year 2014 my hands began to feel numb. This is when I looked on the internet about numb hands and came across MS. I kept it to myself for a few months. Things then continued to get worse. I started noticing walking was difficult not only when I was drunk but other times, especially when it was dark. I eventually went to the doctors in March after my friends convinced me that I needed to. I told the doctor I had researched on the internet about my symptoms and it came up with MS and he just nodded his head. He referred me to the neurologist straight away. During the wait for the appointment my symptoms just got worse.

I feel I have handled my diagnosis pretty well. I try to see the funny side of this disease and make jokes with my friends, I believe it to be a good way of dealing with it. I have great friends and family who have supported me a lot. Without their continued support things would be a lot harder. I’m very grateful and consider myself to be very fortunate in that regard.

In some ways being diagnosed with MS has had its benefits. During my wait to see the neurologist I joined a sports club where I go swimming and use the gym. I improved my diet and stopped drinking and smoking. I think I’ve got drunk less than 10 times since which is crazy!! I would never have done these things if I didn’t have MS. Also I feel that I have become closer to some friends and family which is nice!

Thanks to anyone who has bothered to read my extremely long message. I apologise for it being sooo long, I’m a rambler!!! Hopefully get to speak to some of you soon!!

Hello Carlo, I like your attitude it’s good to be positive, I am mainly positive but have had my moments over the years. Welcome to the merry go round.

Jan x

Hiya

I also have tysabri at southampton general and have highly active rrms. I went back on it at the end of December after being off it while I had 2 babies. I was diagnosed almost 5 years ago and have only ever had tysabri as a dmd. It seems to be doing the trick and when I went on it the first time I was so well that I took up taekwondo!

The nurses are all lovely there & it’s nice that you get the chance to talk to them if anythjng is worrying you.

After diagnosis I also became healthier, it makes you appreciate your body and your life and family as its the only one you get!

There’s a woman used to be on tysabri that also lives on the isle of wight but she’s gone over to gilenya now & I still see her when I go to see Dr Halfpenny every 6 months or so.

I’m glad tysabri is working well for you too

Lorna

Hi Carlo!

I found your post interesting and admired the way you are dealing with your diagnosis, improving your health etc.

One thing about having a mobility problem, is that some people can think youve had one too many scoops (as Paul OGrady refers to booze!)

I have a friend who has Ataxia. He slurs his words and wobbles as he walks. He is often accused of being fresh…which isn`t true! Makes you wonder if you should just drink what you like and wobble nevertheless!

Laughing aside, it does make all the difference if you have a good support network around you. This is what makes a huge difference to my life.

Polyx

Hi Carlo and welcome to the forum. You will get lots of help and advice here.

I know exactly what you mean about being relieved to have the diagnosis of MS as you knew something was wrong and if it wasn’t MS then what was it?

I was diagnosed in 2005 after going blind in one eye which turned out to be Optic Neuritis which was the start of the symptoms. After my MRI and lumber puncture the neuro asked me if I had anyone with me as he didn’t want to deliver the diagnosis with me alone. It was very frightening. When he called my hubby into the room and gave us the news I remember a huge sigh of relief as I was convinced I had a brain tumour.

Your attitude at the age of 25 is very admirable and I look forward to chatting with you soon.

Be happy.

Shazzie x

Thanks for the replies people and your kind comments, I didn’t realise the post would be on here so quick! I had been rather hesitant prior to posting but finally grew some balls. I reckon it’s gonna be a good decision to join.

The nurses at Southampton are really nice like you said easy to talk to which makes things a lot easier. I do worry about coming off Tysabri though because I feel it has been effective, I wonder will other treatments be as good. I tested positive for that JC virus. So can you end up returning to Tysabri at a later date?

A lot of people thought I was drunk last year when I was walking. People who didn’t know me, even my very insensitive boss at work and my dad ha ha!

Hiya

I am also jc+ but my titre levels are low which means my risk of pml is still pretty low. Have you had your titre level checked? I’m not intending to come off tysabri unless my titre levels get high. You can go back on tysabri but while its working so well I’d stay on it.

You have a really good attitude towards your symptoms. Whenever my walking goes wonky I also get the added bonus of slurred speech which really makes people think I’m drunk!

Hiya

I am also jc+ but my titre levels are low which means my risk of pml is still pretty low. Have you had your titre level checked? I’m not intending to come off tysabri unless my titre levels get high. You can go back on tysabri but while its working so well I’d stay on it.

You have a really good attitude towards your symptoms. Whenever my walking goes wonky I also get the added bonus of slurred speech which really makes people think I’m drunk!

My speech hasn’t become slurred, although my auntie said she had noticed my voice had improved and become more confident in the last few months. I hadn’t noticed a difference.

No-one has ever mentioned titre levels to me. I didn’t know anything about it before you mentioned it. I have an infusion next Wednesday so I will ask the nurses.