Latest MS neurologist appointment

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.

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Antihistamines Helping MS?

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.

All the things I should say ❤

I started this blog a few months ago before life got hectic. But now after my reflection blog I think this is the time to go back and finish this.

To my boyfriend (sounds like we are kids), my partner (sounds like a work thing), my other half (just meh nothing else). Hang on I’ve got it. To my beacon of love (sorry inside joke, that’s if he remembers saying that).

I don’t say it enough how much you mean to me and how much I rely on you. It’s all the little things together that makes me love you more.

We’ve not had the best 1st year together. But you’ve stood by me when others would have ran. Your right I probably  wasn’t ready for a relationship. But I fell for you hard when I let my guard down and gave into what I was feeling for you. But this is something I don’t tell you enough.

I was used to doing everything myself and someone pretending that they were there for me. But now I really do have you with me always. You’ve been with to every appointment at the MS clinic which you know means so much to me. There are times when I’ve wanted to give up and run away but you’ve kept me strong. Even just to listen to my moans or dry my tears.

The same can be said about the court case where still all I can think about is the nightmare of giving evidence which still haunts me some nights and then running into your arms when they finally stopped after two hours of me giving evidence. I can still see the concern on your face and your anger in your voice as you asked “what the hell happened in there”.

But as I love you more and more each day I find myself becoming more distant with you when I want the complete opposite. I want to give you everything and I know that’s what you want (you tell me often enough).

I have no problem telling you that I love you and I do tell you often. But I really struggle to compliment you and tell you what I’m actually thinking. But then recently I realised I cant cope with getting compliments from you either. I have my reasons and this is something I want to work on and improve in our relationship and I want your help to do it.

Multiple Sclerosis and depression.

I’m not sure if what I’m feeling is depression, but I know I might need to look into it in the near future. I’ve done a lot of research on MS symptoms and side effects.

One of the things I’ve read is that people need to be aware of is that MS seems to be linked to depression. I can understand it, personally I’ve been fortunate. Before the onset of MS I had perfect vision and was fairly active, in fact I had recently took up jogging before my diagnosis. Now my vision needs a minor prescription and I’m not quite as active. But others are left with debilitating conditions and a decrease in their ability to manage independently.

I’ve been dealing with a lot recently: a bad house move, raising 2 children myself, MS diagnosis and not to forget my ex husband appearing in court for a domestic offence against myself.

But I was surprised when sitting at the theatre about a week ago I got into a conversation with the lady next to me and her three children. Her children who were in their 30’s each had a mild learning disability. However the one sitting next to her had a severe fear of heights and since we were in the first row at the highest section this wasn’t a good combination. He was anxious whenever someone stood up and if anyone put their coat or a drink on the ledge in front of our seats. It may  have been the alcohol but I found myself thinking about how easy it would be to jump over the edge and stop all these difficulties in my life. One jump and I would have no more court cases, no more being told what to do, no more arguments, no more fighting, no more tiredness. Just peace.

 

Fighting with everyone 

Last year I published a blog with all the good things that had happened to me and all the bad things. When I wrote it there seemed to be positives to balance out the negatives.

But this year I’m just fed up, I feel like I’m fighting with everyone.

With everything that has happened this year I’ve been close to breaking point a few times. But this house has just about sent me over the edge. I finally lost it and couldn’t keep myself composed about a week ago. In fact it was boxing day, we went to the cinema to see the new Star Wars film and stopped at the new house on the way back.

I found myself looking around thinking I’ve had enough. I cant do this anymore, everything feels like a fight and I have little fight left in me.

 

Fighting might be too strong a word but its close to how I feel in every area.

Work – I’ve had to complain about my manager about my temporary manager as he’s worse than useless.

My partner – I get it, he’s been having a difficult time with everything. But it just means that I am taking the brunt of it all. Everything wrong in his life is my fault. So I have to be strong for us both and take the shit he throws my way.

House – It’s like a fight everyday to do something to the house to make it liveable. And then this brings in defending myself to everyone close to me as to why I’ve chose this house. It’s not like I can change it now.

Ex husband – Not much has changed here I am just fed up with it. Everything seems like a fight. He wants everything his way and when its not I’m threatened with lawyers. I wish he would go to a lawyer! Then my parents are clearly not his biggest fan so they have a go at me for everything that he does and that he should have no contact with his children. Which is clearly not possible or fair on the kids.

MS – Its like a fight everyday to work through tiredness and stay positive that my whole life wont be turned upside down by it.

Kids – The boys are just being boys. They want to run around and play, they have energy they want to burn. But at my parents they aren’t allowed to move. Every time they move they are told they are going to break their neck or another bone in their body. If they make a noise I’m told they need to get out the house. (This was even on the same day that the youngest has a sickness bug.) I would never take the kids out when they are ill. But staying here I have no choice as it stressed out my Mum them being here.

Sleep – My younger brother has came home for Christmas. There has been clear favouritism for years but living in it makes it more apparent somehow.

An example – I have nowhere to live due to the difficulties with the new house so I’ve came back to my parents with the kids for the past month. Tonight I’m told no one can stay in the room I’m in until it has been cleaned properly. However my brothers room is fine (he threw up on the floor the other night!!)

This has led to my youngest sleeping in the same bed as me. This may not seem like a big thing. But at three years old he cant sleep in one place. Honestly he is up crawling about the bed in his sleep! While typing this blog he has kicked the laptop at least four times after I have moved him back to the other side of he bed. With MS this isn’t practical, I’m terrified I’m going to cause myself to relapse with the amount of stress and fatigue that I’m putting myself under just now and not having a chanceto sleep properly to try and contract any of the harm being done.

 

Packing my life into boxes.

As my moving day got closer there was an odd sense of happiness that I was ending this part of my life and starting afresh.

It has been over a year since I separated from my ex husband. But there have still been so many negative things still happening in that house which I want to leave behind. I had the whole incident in April which started the court case Link to my Blog – I never thought I’d end up being a victim giving evidence in court 😖. My neurologist thinks I’ve had two MS relapses. Both have been in that house.

I think there is some part of my ex who thinks the house still has something to do with him. And on odd occasions my eldest would suddenly talk about when Daddy lived with us. This would happen after contact with his Dad which I don’t see as  a coincidence. I mean what normal Father would bring these memories back to a child? For my eldest this meant that he remembered the incident in April and all the shouting that was targeted at me by his Dad.

Moving gave me a chance to clear out everything in the house from top to bottom. Get rid of everything I didn’t want. This includes possessions as well as some memories.

Multiple Sclerosis scan updates

Just a quick update. I got an appointment last month (November) for the MRI contrast scans that I got in the summer. The neurologist was happy with the scans. He explained that some of the white swelling in my scans had reduced while others had disappeared completely. He was clear that this was normal for MS and didn’t mean I was healing.

But I can’t help but hope my healthier eating and various supplements may be at least helping the progress.