For those of you who are reading this for the first time, read this post first, because it’s too complicated and boring for me to keep going over it. The short version is I have fatigue, weakness, and pain down my right side, particularly my right arm. No known cause. I thought I would give you the latest update. I’ve been struggling along, some days are better than others. I am fatigued every day, but sometimes I manage to do more than others. If I have pushed myself one day, then I end up paying for it the next day, sometimes the next few days. It’s the mental fatigue that sometimes gets me more than the physical fatigue, to be honest. I have so many projects I’d like to get off the ground or focus on but my brain won’t let me. I’ve had to give up my job as a practice nurse due to in part crippling anxiety and in part it was physically draining. I was working four mornings a week but I was so drained after coming home that it felt like I was working four full days a week and I felt like I couldn’t do anything else around the house or work on my blog past the minimum. I was also unable to say yes to any film and TV extras work and I died a little inside every time I had to say no to a request.
Now, I am blogging and writing full-time, I am close to completing my first ever fiction work and I am back doing extras work. I am lucky enough to be able to work as an agency nurse in care homes too when I need extra money. I do realise I am in a fortunate position to be able to work like this, but also, I have worked my arse off in blogging to be able to make money from it, plus I have paid my dues as a nurse.
I was re-referred to the neurologist and it took almost a year for an appointment but I finally saw them a couple of weeks ago. I had a list of questions and possible diagnoses that I wanted to talk about, and she was very approachable and knowledgeable. The only thing she wouldn’t do was talk about the lumps I have in my neck/ enlarged lymph nodes because she said they weren’t her area. I ruled out diabetic neuropathy (I have pre-diabetes and get some bouts of hypoglycaemia) because she said that wouldn’t occur on one side only. She is arranging an MRI of my brain and whole spine, which is what I wanted. I originally had an MRI of my head and neck which was essentially normal, and then a repeat one of just my head, which was normal. She is also ordering an MRA, which looks at blood vessels and would show if I had suffered a stroke of some kind. I am going to have repeat nerve conduction tests too, which I had before and were normal. She also advised pilates and to lose weight – I know I am overweight, it is hard to exercise due to my condition but I do force myself to walk to school and walk the dog, plus I am working on cutting my portion sizes.
If everything comes back normal again, then it’s likely it is something called Functional Neurological Disorder (FND), which essentially means they can’t find any structural cause for my symptoms, but something is interfering with the function of the nervous sytem.
The other issue I’m having which is spiking my anxiety is my enlarged lymph nodes. One of the possibilities (in my head anyway) is lymphoma which could be attacking the nerves. I have had them for a while, with no link to an infection. I finally saw a GP last week who actually felt them for me, and she seemed a bit clueless, wittered on about thyroid. When I asked if the lumps were thyroid she said they were lymph glands, and if the thyroid bloods were normal then they would try other investigations. I had my thyroid checked last year and it was normal, so I’m not expecting it to have changed. There is a three week wait for a blood test, I really would like a referral before then, but I guess I will have to wait. Meanwhile I’ll just have more anxiety! I am trying not to worry about it too much, if I have got lymphoma then it is likely that it is very slow growing as I’ve had these enlarged nodes for a while and my symptoms are the same.
So, more waiting. The good news is the MRI appointment is this weekend, so that’s one test down. I will keep you updated as I go along.
Me with my dog Archie. My top is a new one from Lighthouse Clothing (gifted). I love the bright stripes and it is comfortable and goes with a lot of things from my wardrobe. It is really good quality too. I’m wearing a size 16 which is my normal size, it is true to size.
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