My conditions

Hi, I'm Gaby, it's been a while since I last posted anything on here.

I have been diagnosed with HNPP (Hereditary Neuropathy with liability to Pressure Palsies), FND and chronic migraines. It's been really hard transitioning from being fit and active to not allowed to do anything or very little of anything that I've done all my life and it all happening overnight.

I've received some good support for the migraines and the HNPP, which not much can be done, but for the FND I'm on a waiting list for therapy that could help or could make it worse. I've been waiting just just under 3 years now and have just been told it will be January 2027 before I'm any closer to getting an appointment. That will be 3 and a half years since the assessment and almost 4 years since referral. Other than the therapy I've been given a website to read and then in a recent appointment was shown a youtube video of a leopard and an impala and told the flare ups are the monkey inside me getting bigger. I would say that the FND is probably the main cause of all my flare ups with the migraines in a close second. I understand waiting lists and lack of resources but to be left almost 4 years with no support, when I was initially told 12-18 months is quite shocking. Especially for something that severely affects my life, including work.

I've tried to go to my GP but they won't see me for these conditions, they won't even provide a sick note and say the neurologist has to do it, which is really hard to do, even they've said it's not the norm for them. When I do go to the GP, which isn't often at all, or on rare occasions the hospital for other things, they just say it's the HNPP or the FND and to "go home and take a nap", as if that cures everything. When I do get different symptoms I'm scared to go to the GP or the hospital for fear of being told to stop wasting their time again. I rarely go to the GP or hospital by choice anyway, so when I do it's because it's doesn't feel like the conditions I have and something else.

This is my second GP in 3 years as well. The previous GP accused me of misusing my medication, when I didn't. I took my medication as the hospital told me to, it's not my fault the discharge paperwork was wrong, a student doctor filled it out. Even after the investigation the GP did after I submitted a complaint, which found they were in the wrong, they still labelled me as a medication misuser and even refused to prescribe my asthma inhaler, it's a good job I didn't need it.

I never thought that I'd be in a situation where the people you are supposed to trust for help and support are the ones actively refusing to help and support me. One of my main fears is one day I will actually have something wrong with me that's not my conditions, but won't get proper treatment for it because the GP or A&E just assume it's my conditions, and when I do get help it will be too late for treatment to be effective.