So it’s been a busy few days from getting MRI results to meeting with the MS nurse.
I have 2 young children who I will need to arrange alternative care for when I’m getting this treatment and after i’ve had it. So I took my dad with me to this appointment as my parents will probably have the kids.
We discussed the other drugs that are available to treat MS but the nurse seemed pretty set that Lemtrada was the best option for me. What she advised was that other drugs were a “first line” drug and when they failed to work then a second line drug would be looked at. So instead of waiting for a relapse which could leave a disability, just hit it hard with lemtrada.
At the appointment I was also given a nice purple leather folder with all the leaflets about lemtrada in it. Maybe this is why the drug is so expensive?
I thought that my treatment would be around August time (7 months away). But when I went for the appointment it looks like it’s more likely to be March (2 months away). I can’t believe it’s all likely to be happening so quickly. I should know a definate date in a few days but first i’ve to go back for blood tests to check I don’t have hepatitis, HIV or TB plus loads of other tests. Then within the next two weeks I will also get a chest x-ray to ensure I don’t have dormant TB.
At least I’ll have an up to date list of everything I don’t have!
Yesterday might have been one of my worst general MS days. I felt shattered all day and the pain. I can’t say the pain was located to just one place, it was generally everywhere. And if anything touched me it was even worse.
I started typing this yesterday, but even that was hurting and I had to give up. I took paracetamol and ibrufen, and it didn’t even feel like it touched the pain.
It was a horrible day and I hope that today is better. So far it hasn’t been as sore. But then ive only been awake for 45 minutes.
So I had a 10 minute or so conversation with my MS nurse. It sounds like lemtrada is a pretty definate option. We discussed side effects, long term treatment options and generally how lemtrada will benefit me.
However I still needed to make am appointment to see the MS nurse. She advised that they are much more flexible and offered an appointment in a few days time. So I arranged it through work and got the time to go to this appointment.
So only a few days prior I received a letter that I googled the contents of to find that I had active lessions from my MS.
I’ve had some odd feelings where my leg had a burning sensation and then freezing cold. So I know something is going on but it’s annoying rather than unmanageable.
I’ve been off work recently as I didn’t handle being told about my relapse very well. So I have had a lot of chats to my manager about what is going on. A few days after I returned to work he asked how I was feeling and I told him I was fine apart from this odd feeling I had I my arm. Then I went back to work.
But a couple of hours later things were not getting better. I realised while trying to write notes from a phone conversation, that I was struggling to write. My hand just wouldn’t move the way I wanted it to!
I spoke to my manager and we agreed that I should phone my GP. She was very supportive but advised that she couldn’t actually help I had to speak to the MS clinic. So I phoned and left them a message. Interestingly though what my GP did say was that the neurologist had said in their letter that lemtrada was going to be recomended as a treatment.
Thankfully within a few hours I was able to write again so I wasn’t in as much of a panic. I think what’s worse is I feel ok I just can’t physically do things that I want to do. Like write on this occasion.
So I received my MRI results in the post last week. I can’t help but feel this is a very insensitive way of giving someone sensitive information.
The letter advised that I had new lesions in three areas. I relied on good old Google to understand what the letter said. Google advised me that I had 3 new areas of lesions within my brain. But also in the letter it advised that an MS nurse would be in touch to arrange starting a disease notifying treatment.
So my latest neurologist appointment hasn’t gone so well. Firstly for anyone that follows from the last post my neurologist does not support the use of antihistamines to manage MS. (Didn’t tell him I was doing my own trial).
However his reasons for not using antihistamines did not seem to be about if they would work or not and rather more about how expensive it would be to run the trial and that no one would fund a bigger trial (and the reasons why this was).
I’m starting to think that neurologists are a different breed of people (there must be a joke there somewhere). I told him that I had been feeling tired lately and that I have been getting a weird burning sensation in my leg which then goes ice cold. I also explained that I have been tired most of the day, most days recently.
Its now only a few days later that I am thinking more about this conversation, his reply to this information that I gave him was that I was having a relapse and I needed to get MRI scans to see what was happening. I asked what I should do with my symptoms and should I carry on as normal or try and get a bit more rest. I was basically told to ignore them. And then based on the scans we would decide what medication I was starting.
I had went from someone who was “healthy” to someone who was relapsing, he had completely devastated me and he had no idea. I got out of the hospital fast and phoned my partner and explained what had happened. I couldn’t stop crying and this was completely out of my control, there was nothing I could do.
I phoned my GP and through the tears told her I didn’t know why I was phoning as I didn’t know what she could actually do to help, but I wanted to tell her incase she could do something. (She must have thought I was an idiot, and I kept saying sorry to her for crying.) She signed me off work for a couple of weeks to get my head around what was happening. And that when I realised that the neurologist asked next to nothing. He was interested in my physical symptoms. But as far as the fact I haven’t had a full nights sleep in weeks, I am a single parent of two young children, it’s coming up to Christmas, I have a mental ex husband and a stressful job. Surely these thing should be considered and there comes a point where I need to slow down. I don’t think my body can cope with everything that I am trying to do. He didn’t even ask how sore and uncomfortable the pain was that I am experiencing or tell me what I can do to help with it.
Sorry I have been so busy recently I haven’t had time to think about posting anything. Recently I read some research about how antihistamines can help repair the damage to the myelin sheath caused by MS. So what would any responsible person do when they read this? You guessed it I sourced some antihistamines to give it a go myself.
Fortunately I have a friend who works in a chemist so I sent them the research to read and see what they thought. To my surprise but also delight they bought a packet in for me to try. The research states that the trial had people taking the equivalent of 6 tablets a day and the most common side effect was fatigue. Ok so I started fairly low with only one at night. And even that made me drowsy. After a week or so I increased the dose to 2 at night. I stuck at this dose for a few weeks and realised that if I took the tablets too late then I would be really tired in the morning.
I took these tablets each night only missing the occasional night (either forgot or it is important to note that they can not be mixed with alcohol). Then I started to notice the improvements. First I realised that my memory was getting better (more like it used to be anyway) and that’s when I checked my eyesight. My left eye has been left with damage from optic neuritis last year and it has left my eyesight in that eye like the brightness of the TV is turned up to high. This seemed to be starting to heal though. Is this all a conscience or are these antihistamines actually working? I suppose only time will tell.