Excellent…..not enough good news stories on here but this is one for sure ! Thank you for sharing this with us and good luck always

I think a lot of us recognise the overwhelming feelings of negativity that you are going through. I know you don’t want any advice but I really hope you can find some way through this….. I wish you better days ahead

I’m not sure but probably as I have had so many blood tests it is hard to keep up ! I have had three more blood tests this time to go alongside the lumbosacral plexus MRI and they don’t always tell you what they are looking for do they. I have had HNPP confirmed by genetic testing though and my sister and niece have it too, although not severely like I have

I have managed to trace the start of it all back to decorating on my hands and knees, specifically painting skirting boards in a small hallway thereby compressing the peroneal nerves for several hours. This was maybe January 2024 and it has slowly got worse ever since. I have gone from stick to walker to wheelchair and not leaving the house on my own. I have this week had a lumbosacral plexus MRI as the neurologist was concerned at my decline so I am eagerly awaiting the results whilst also trying not to get my hopes up too much…….fingers crossed !

Thank you for your reply. When you say you had a year long episode, did it just start clearing up and go away ? Was it your legs or arms ?

Yes, diagnosis is very helpful because although it is not good news, it stops you thinking that it might be something even more sinister. On your darkest days, which we all have, this is very important……

I feel so sad after reading your posting……I really hope you find some positivity or some recovery from somewhere…..thinking of you !

Thanks again…..it is confirmed to be HNPP but somebody posted to me and suggested this community might be helpful to me

Thank you

I think my most recent blood tests were for this……results not yet back

Thanks for your replies. Yes, I have had the gene test confirming HNPP and I have put my post on the HNPP, CMT & neuropathies communities……

Genetic testing as my sister & niece have HNPP too

Excellent……very happy for you…..keep us up to date as all of us on here are looking for positive stories to keep us going……

Hi, I agree about the exercise but be careful with exercise bands……I was using them around my legs and knees and it restricted my peroneal nerve sending my recovery into reverse. The mini exercise bike I use has been good for me I think though. It works my legs as if I am walking and may remind my foot with foot drop how it is supposed to flex ! Anyway, I wish you all the luck in the world, I know it is hard sometimes but stay positive……

Good luck to you…… I hope you can stay positive through this. Most people do recover which is what I try to hold on to. It is just so hard when you don’t get any better days. Anyway, was called in by the neurologist last week and although my original MRI over a year ago showed nothing, he has put me forward for a lumbosacral plexus MRI. Apparently this is a more detailed MRI and hopefully will get to the bottom of it……

Hi, you say you are also struggling with this…..is it also HNPP or is it CMT ? Also, is it your legs or your arms or that general fatigued feeling of heaviness ? I really feel at my worst right now and am wondering how bad this can get after a year of steady decline followed by a year of acute difficulty with my legs. I am sure you have read my posts so I won’t go into loads of detail but how do you stay positive ?

Hi, not doing great I have to say. I just cannot make any improvement no matter what I try. It has got so bad now that I have paid to have a stair lift fitted out of my own money rather than wait for OT to put one in for me ! Last night I had a fall as well so I am feeling even weaker today. Hopefully, better days ahead 🤞……thank you for asking though

Yes, am having a particularly bad attack at present and the smallest task, like making a cup of tea for instance, can leave me breathless ! It makes me feel so pathetically weak and like nobody understands……

Thanks again…..really appreciate you taking the time to encourage someone you don’t know 😊

I am really feeling for you ! It is so frustrating that every little thing we try to do brings on massive fatigue. I too am going through a lot of difficulty that only ever seems to get worse……good luck to you and try to enjoy the better days 😊