MRI SCAN NUMBER???

I had another MRI scan yesterday, I can't tell you what number it was though as I've had so many over the years.

I had my first scan back in 2002 when I had my first symptoms. I had no idea what it was or what it would involve and I'd be lying if I said I wasn't a bit nervous. I remember a friend saying to me to keep my eyes shut, so that you can't see how enclosed the space is, it was the best piece of advice as I know it is incredibly tight and I still do that to this day.

Unfortunately as I am not very active and am not able to move very well, I have put on weight over the years. It has always been something that I am quite sensitive about as I was a trained dancer and I know all about body conditioning but it has all gone out the window as I am unable to do any of it anymore. I wasn't sure how I would feel about going in to a tube to be scanned when I had my first one, but I have actually found that as long as I keep my eyes shut and I take my mind off to somewhere else, I am able to get through it okay.

As with everything, things have changed over the years too. Where I have had my scans they have provided headphones and will play a radio station for you to listen to but I was in a different scanner yesterday so there wasn't any music. You are given ear plugs anyway as the scanner is very loud and they still put headphones on you so that they can communicate with you while you're having your scans. When I had my first scans, over twenty years ago, I used to sing lots of songs in my head. I had been involved in lots of musicals over the years and so I would just sing the lyrics to myself and that would help make the time go by. It's what I did yesterday too 🎶

It goes without saying that I think I am quite strange. I have a body that never wants to work with me and always does strange things and falling asleep while I'm having an MRI scan is definitely a weird one. The scanner is very loud and it's not somewhere you would automatically think of to catch forty winks but I guess I am so used to it now and I imagine myself being somewhere else, I have my eyes closed anyway and I just find myself drifting off, it really does help the time go by quite quickly. True to form, I drifted off yesterday! 😴

The timings of the scans can vary as it depends how many parts of your body they want scans of. I had my brain and spine done yesterday, which is fairly standard and took about forty minutes. They have to move you up and down the tube depending on which body part they are doing. Sometimes they want to inject a contrast dye into your veins. I believe that it is just so that things will show up on the scan more clearly, which is fine, as long as they can access your veins successfully. This is another area where my body and I don't see eye to eye. My veins are not easy to access and because of the painful sensations in my skin, it is why I have a TIVAD (Totally Implantable Venous Access Device) in my chest, but not every hospital have nurses who are able to access it, but that's another story!

You don't get the results of the scans straight away as they have to be looked at by a radiologist. The results will go to my consultant and he will then let me know if there have been any changes since my scan last year. 

I've learnt not to expect anything anymore as, when I had scans taken over the first few years, I would feel that there had been changes to my symptoms but the scans wouldn't show anything. It was incredibly frustrating because it made me feel as though I was making it up. Now though the scans have been showing changes and I'm frustrated about that because it confirms my deterioration - I can never win 😳

So that's my MRI done for another year, now I can think about the next appointment which will be my next dose of MS treatment, Ocrevus, which is next week.......where did that time go?!?! 

XxXxX 💕

As always, Rosie is sending her love to anyone who needs it xxx 😻

In her own little MRI "tube"! 

Chronic pain Vs Acute pain

What is the difference between Chronic pain and Acute pain? 

Acute pain is normally a short timescale. It is the pain you feel after an accident, an injury or operation and generally will resolve itself once the body has healed.

Chronic pain is pain that continues after the body has healed or it is pain caused by nerve damage. This tends to be long lasting and doesn't necessarily resolve itself.

The pain I have is chronic pain, caused by nerve damage and I have had this pain since my symptoms first started back in July 2002. I can genuinely say that I have not had a day without this pain since it started all those years ago. 

Altered sensations and pain were among the first symptoms I experienced. I woke up one day with, what felt like, pins and needles in my left leg and the bottom of my feet. I thought I had slept awkwardly and assumed it would resolve itself but after a few days it was still there with the feeling more intense. 

I went to my GP surgery and, over a couple of weeks, I'd seen most of the doctors there. I had been given various suggestions about what it could be but each time I would go away and hope it would resolve but it didn't. 

I then saw a doctor who did several checks and eventually said that he wanted to refer me to a consultant neurologist. It was like he was speaking in a foreign language, I had no idea what he was talking about.

A consultant neurologist is someone who specialises in conditions that are caused by nerve problems or damage.

I got an appointment at our local hospital with a neurologist and was told he suspected Multiple Sclerosis. He hoped it would be a one off episode and that the altered sensations and pain would go away but it would need time for us to see what would happen. 

I ended up in the hospital in Plymouth, about thirty five miles away 

He organised the standard tests to diagnose MS, an MRI, Lumbar puncture, Evoked Potentials and various blood tests. You also have to give it time, to see what happens, whether the relapse resolves and leaves you with no lasting issues or if you do have symptoms, you need to see how those affect you. 

I know it sounds strange but I think I was actually really lucky with my diagnosis. I know of people who have struggled for years with various symptoms, that have come and gone over the years but have not had a definitive diagnosis. My symptoms started and within about six months I had a definite diagnosis. 

Finally, what I thought was all in my head and I was going mad, had a name and was a reason for what was happening to me. It was still very scary and I knew we needed time to see how my symptoms would develop, or not, as the hope was. 

Unfortunately a few months after my first symptoms started, I had another relapse, which was quite debilitating and left me in hospital. I have been on crutches ever since that relapse. 

It was about this time that I learnt about chronic illnesses and the difference between acute and chronic symptoms. My head was in a total spin but I had been referred to a wonderful consultant neurologist, who I still have today and is now a Professor. I'm so grateful for all the patience and support he has shown Martin and myself over the last twenty years. It is the support from the people with all the medical knowledge over the years, that has been so valuable to us both. My consultant, my wonderful GP and physio and all of the various services that I've used over the years, I am so grateful to them all. I knew that these people and services existed, but I'd never needed to use any of them until I was diagnosed with MS and suddenly a whole new world opened up for us. A huge thank you goes out to our wonderful NHS 🧑‍⚕️

It's amazing what an impact being in chronic pain can have on your quality of life. I wish I hadn't taken for granted all the things I used to be able to do, but I'm trying to look forward now and appreciate all the positive things I have in my life, of which there are many! 😄

XxXxX 💕

As I always like to share, here is some Rosie love for everyone 😻