Visit with Neuro Consultant 6th February 2023

 Today I had my six monthly visit with my neuro consultant. He is mostly concerned with how well I am doing on the IVIG as he has to get my medication approved each time. 

We talked about my chest pain which I have been told is musculoskeletal and he said it could very well be part of my condition. This is both reassuring and despairing. It's a new pain that I will just have to put up with forever. Trust me, I'm used to this, give me six months and it will... oh yes, that chest pain, it's annoying but I'm used to it now.  

Just to put my mind at rest he is going to request an abdominal and chest CT Scan to make sure nothing else is going on. If it is something else then it will be picked up. It might even be something that can be fixed, I can only hope. 

We talked about whether it was possible to have spasms while asleep. I know that I do, and my husband Graham can confer. He has had to wake me up when I'm having  a spasm. Yes, they still hurt but sometime it takes a while for them to get so bad that they wake me up. But, I did get into a discussion with a fellow sufferer online who claimed that you can't have spasms while sleeping and you have to wake up first. My consultant explained that because SPS is a condition that effects the Central Nervous System then the person does not have to be awake for it to be active. 

My consultant asked me to make a video talking about my condition, how it affects me, what triggers spasms, and how I feel after IVIG. He will use it to show his student doctors.

Three Flare ups and a Catheter Change and all in the first month of the year.

 My poor girl has really been through a lot this month. She has had three flare ups of severe diarrhoea.

One attack was pretty awful I was tempted to take her to A&E but as she's been before in this state and they did nothing to help, she was adamant that she didn't want to go. So we dealt with it at home. I did manage to take some photos of the toilet which I can share with her consultant, this needs to be seen. Although, it's not something I'd share elsewhere. 

The good news is that she has the date for her MRI Entogram, 23rd February. She has to avoid certain food for three days before the scan and going through the list I think she will be okay. The only things she really likes are baked beans and peas and red meat but it's only 3 days. Then on the day she will need to drink a liquid (mannitol solution) to fill the small bowl with fluid. Then the MRI will give detailed pictures of the small bowel and evidence of blockages or inflammation. 

She had the district nurse arrive to replace her catheter at home. This was a first as previous changes had been done in hospital. She finds the experience extremely painful but she's very brave and the nurse helped by getting it in first time. Lucy found it painful at first, but then she  had a flare up shortly afterwards. It was all a bit of a nightmare, we had to keep it clean so it didn't get infected. She needs lots of help with this. 

After four days I was getting worried that her pain was not subsiding and said we should call the nurse but she wouldn't let me. I gave her a couple of more days and she said she was okay. She was obviously not, but with lots of cleaning and cream we managed to get her fairly comfortable. She was so scared the catheter would have to be replaced she'd rather walk around in pain every day! 

We haven't heard back from the Urology clinic which is a bit worrying. They said we would have the results of her urodynamics testing in six weeks but it's been twice as long. I did get a letter saying they were concerned about something that showed up on her MRI and wanted to consult with the children's hospital. I think this is probably what is holding them up. They want to get answers from everything rather than speculating. I do think I've given them a reasonable amount of time though, so I am going to contact PALS (Patient Liason) to see if they can find out what is going on. I don't mind waiting for results but it would be nice to know that she hasn't fallen by the wayside. (This has happened before.) 

It's Not a Heart Attack but I've no idea what it is

 On 23rd January after an awful weekend I was in a lot of pain with my chest. I've been to the GP several times with this pain. First I was told it was gastric and she gave me Gaviscon and Laxido. It helped a little but the pain was keeping me up at night. My second visit I was told it was my rib and I was given strong painkillers. They helped but also caused me gastric problems. It felt like I was going around in circles. 

My third visit was just as bad. The GP said that my pain was musculoskeletal and said I needed physio therapy. 

Then I had a really bad weekend and on the 23rd Graham went out to visit his mum. I had a really bad spasm and my daughter panicked and called 111 who sent an ambulance. It arrived within 10 minutes! 

The ambulance crew told me that I wasn't having a heart attack. I knew that already, but with chest pains that is the first thing they have to rule out. They couldn't rule out a lot of other things though and wanted me to go to A&E. By this time, Graham was home so I said I'd go with him.

We were ushered in through ambulatory care because of already being seen by an ambulance crew. We were at the hospital for 4 hours and and they checked everything. I also had an Xray on my chest. They concluded that I did not have any heart problems or a pulmonary embolism. I do have scarring on my lungs, possibly from Covid, but other than that nothing conclusive. So they put my pain down to musculoskeletal. 

I have been summoned for another Xray in a couple of weeks just to make sure my lungs are not getting any worse. 

I'm not sure what is going on in my chest, but the pain is deep inside. I hope I will have some answers someday.