Hi, I’m Louise and as some of you may know, back in 2017 I was hit by a rapid and highly disabling post viral inflammatory attack on my nervous system, which caused me several problems for quite some time. I recovered with some steroid help and time, to about 80%.

Whilst not perfect, I thought I was over that time, I was working 33 hours a week and being mum to Isaac with generally very full life. Until 4 weeks ago….

I had a chest infection and had antibiotics and seemed to be getting better: but suddenly I was suffering with crippling high blood pressure and chest pain (crisis level blood pressure and in hospital 3x for meds and monitor) and I didn’t know why, other than I have just had a chest infection. I then developed the worst neck and arm pain, rapid changes in heart rate annd blood pressure, insomnia and my skin began to feel like it was on fire. Things escalated and then rapidly deteriorated. I’ve lost 8kg over the past few weeks. All the autonomic symptoms I had before returned within a week, leaving me off work, in bed 75% of the day as my body is rapidly losing autonomic control. Huge swings in blood pressure and heart rate. Excessive sweating, dizziness, neuropathic pain, awful brainfog. See here for a full list, which I have most of now. Dysautonomia symptoms

As this was rapid onset post infectious, just like last time, they are treating it as a guillian-barre without paralysis. My neuro team have advised IVIG treatment. This is an infusion given to people with many neuropathic diseases to stop your body attacking its own nerves. I am going in on Thursday this week for a 5 day course.

Now here’s the kicker. NHS won’t pay for IVIG for my condition without paralysis.

My private medical insurance will pay for 1 round of infusions which I start this Thursday 5th Dec for 5 Days. But according to my neuro it is likely I will need more than 1 round of infusions . Maybe 3, to ensure efficacy.

If it works, then we would look at a longer term solutions to prevent my body attacking itself - that would be a form of true immunosuppression. But I need the IVIG first.

And…… that’s why I set this up.

Unfortunately I don’t have £30k floating around spare for treatment. IVIG is £15k per session. I am doing what I can with the insurance, but it’s limited. Any help I can obtain for from outside, would be most welcome.

I want to go back to work and I want to be back to being Isaac’s mummy - as right now I feel useless.

I am happy to answer any questions on what the treatment is, too.

thanks so much in advance, Lou x