Tuesday, 12 July 2016

Lemtrada - can anyone help?

I am writing this post on behalf of a friend. It has been suggested to her about going on to Lemtrada infusions but she doesn't know much about it. She reached out to me to see if I knew anyone who was on this treatment so that she could find out about the reality of being on it rather than just reading about it. Unfortunately I don't know anyone who has started this treatment but I told her that I would do a quick blog post to see if I could get any information for her. We all know what it's like to face the daunting task of deciding whether a treatment is right for you or not, I remember when it was suggested to me about starting Tysabri infusions, and these aren't your every day drugs without any risks, we took our time and tried to find out all we could about it.....so it's over to you, can anyone help a fellow MSer?! 

Thanks, in advance! 

Saturday, 2 July 2016

Multiple Chronic Illnesses and the problems they present!

When you are diagnosed with a chronic illness, that doesn't stop you being diagnosed with another one or two totally different ones!
For example, I have MS but I also have an under active Thyroid and Meniere's Disease both of which are chronic diseases in their own right! 
I have met lots of people who live their lives with multiple health conditions that impact heavily on their lives and it can sometimes be confusing which symptoms are from which illness! 

I was diagnosed with Multiple Sclerosis first and that was in 2002/2003 but a couple of years after that I was diagnosed with an under active Thyroid. I had assumed that the fatigue I felt from the MS had just got worse but a blood test showed that my thyroid was playing up! It was a weird feeling, my body was really doing the dirty on me! So I was put on lifelong medication for that.......it was quite amusing because I was on a few drugs already for the MS but I had to pay for all the prescriptions for that. But then I was diagnosed with Hypothyroidism or an under active thyroid, which means I actually HAVE to be on medication for the rest of my life and so therefore, from then on, all my prescriptions were free! The medication keeps my thyroid under control and so I don't really get any side effects......I have a yearly blood test which lets them see that I'm on the correct dose of Levothyroxine so that keeps it all in check........that's great because the symptoms from my MS were, and still are, proving harder to manage so I don't really think or worry about my Thyroid too much! 
It was a similar situation in 2013/2014 when I started getting some more exacerbated and new symptoms. I started having problems with the hearing in my left ear and then I started getting vertigo and not the afraid of heights type! 
The vertigo I got was awful, it was so violent and disabling and it scared the life out of me. I would feel as though I had just been punched in the side of my head and everything would turn upside down and start spinning. I would have to close my eyes because I just couldn't focus on anything, I would be dripping in sweat, I would certainly feel sick and in the early days, most of the time I was sick.....I would have a bowl down on my side of the bed "just in case!" The nausea and vomiting got so bad at one stage that it would cause me to lose control of my bladder. I lost confidence about leaving the house because I didn't have any warning signs that the vertigo was going to happen.....I still don't and so for a while it had a really negative impact on my life, it still does actually because I can't drive, in fact I haven't driven for over two and a half years. If I had some kind of warning that it was going to happen it wouldn't be so bad because I could prepare myself but no that's too easy for my body! πŸ˜‰
Vertigo is a symptom that is also associated with MS so when I first started having the episodes we all wondered if it was an MS relapse. It was also considered whether it could be a type of vertigo called Benign Paroxysmal Positional Vertigo (BPPV) this is where certain head movements will trigger vertigo. There is a test that the doctors can do with the head to test for that, which they did and decided that I didn't have that type! 
I had been referred to the ENT department - Ears, Nose and Throat department because of the hearing difficulty I was having in my left ear. It turns out that I only have about 30% percent hearing left in that ear and I also have horrible tinnitus in it too. The tinnitus is horrible because with me it is constant. It sounds to me like I have rushing water going past that ear but on the inside......the volume of it will occasionally change but at the moment it is set to loud and that just makes it harder to hear too! I have been told that the hearing I have lost in my left ear is permanently lost now so I have a hearing aid to help me. 
I was then referred to an ENT consultant to try and sort out the vertigo. It took a while to come to any decisions but eventually after some tests and time and the combination of the symptoms I had, it was decided that I did actually have MΓ©niΓ¨re's disease. The hope is that the vertigo will burn itself out eventually and I will admit that it isn't as bad or as frequent as when I first had it but I do still get episodes a few days of every month which is incredibly frustrating. I still don't get any warning either so driving is still off the cards.....for now but I'm determined to get it back......one day! πŸ˜‰

So I have a list of symptoms from the three illnesses that I have, that takes a lot of energy and effort to manage on a daily basis and those symptoms differ every day. I do try to not let it get me down, which can be easier said than done, but I have the support of my amazing husband, who keeps me positive and cares for me each and every day, my Dad is great support to both myself and Martin and I have an army of wonderful friends who keep checking up on me and it's no exaggeration to say how much my spirit gets lifted by a message of support or someone popping in for coffee! 
It's those little things that keeps me going, keeps me smiling and keeps me positive, so thank you! πŸ˜šπŸ˜‹πŸ’–πŸ˜‹πŸ˜š