I received a letter today from my neurologist, he thinks I may have peripheral nerve hyperexcitability, I am due to have a spinal mri in December and a repeat nerve conduction test but EMG this time. Just waiting on the anitbody blood test results. Has anyone heard of this diagnosis before? Anyone been diagnosed with it? I am just a little confused as I have done some googling and apparently it’s a rare condition. I have been in intensive care on two occasions in my life and that correspondence with this condition and my neurologist mentioned that he’s seen this condition with his patients who have previously been ill before. Just wondered if anyone one here has heard of it. Thank you.
Hi Kim, no I haven’t heard of it - it’s a totally new one to me. Like you I’ve been googling and as you say it’s pretty/very rare. From the little I could find it seems as if symptoms can be treated but I couldn’t find any details. I very much hope you soon get a diagnosis and clarity.
If I’m being intrusive then please do ignore my questions. Do you know what made your neurologist suspect peripheral nerve hyper excitability, what symptoms are you experiencing
Hello, sorry for the late reply. My symptoms have been pins and needles and numb toes in my feet, cramps and twitches for going on to nearly 9 years. I have had a clear brain mri, nerve conduction test was negative. Bloods OK apart from my folate is low.
Antibodies blood tests came back negative. Just waiting for my spinal mri on the 11th and I have a EMG nerve conduction test on the 21st of this month.
Hello, how did they confirm peripheral nerve hyperexcitability? If you don’t mind me asking. I have not been diagnosed yet but the neurologist is pointing towards that but I’ve just had a negative antibody test so I am not sure what it could be now.
Hello, I’m new to this forum, just saw the thread, but sadly I’m not new to PNH. I was diagnosed with it over 15 years ago here in Liverpool. I had an excellent consultant who specialised in PNH, and tried different medications over the years, eventually concluding that lamotrigine managed my symptoms best. While it’s never completely gone, it hasn’t been a daily issue for me either.
Unfortunately, my consultant passed away, and I noticed that there weren’t many specialists whose main focus is PNH. For several years, I had a consultant who specialised in epilepsy and wasn’t particularly interested in PNH.
I was on 400 mg per day for nearly eight years, but about 18 months ago, my symptoms returned with a vengeance. I was honestly surprised and had to be referred again to the Walton Centre. I had another EMG, but nothing conclusive came from that. I’m seeing a new specialist in March to discuss the next steps. From what I understand, there is sparse evidence regarding treatments, but he mentioned the possibility of trying a sodium channel blocker, which is apparently a fairly new development.
I apologise for the lengthy message, but this is actually the first time in over a decade that I’ve mentioned my diagnosis, aside from discussing it with close family. I hope that mutual support can help us navigate what can often be a forgotten condition. Cheers, Richard
Thank you for responding to my post. You’ve been really helpfull. May I ask what was your initial symptoms when you was diagnosed? If you don’t mind me asking. I am also under the walton centre. I hope they find the right medication to ease your symptoms. My consultant suggested pnh but I am not convinced. It will be coming up to 9 years for me with the symptoms. Fingers crossed you find some answers. Did the consultant who diagnosed you with pnh say what could of caused it? Sorry for all the questions. Thank you once again. Please keep me updated. Take care.
Not at all. I started experiencing this in the early 90s. It began as a small twitch under my eyelids. I didn’t receive an official diagnosis until I moved to Liverpool as a student in '97, when a GP referred me to the Walton Centre. By that time, the spasms had spread to my face, and I was having regular daily small spasms in various areas. Eventually, over the years, it spread to my arms, legs, feet, occurring randomly with a few days here and there. Just recently, it’s been affecting my hand and fingers, which is a recent development, since what I’m calling my relapse! It can still reappear unexpectedly and be very annoying.
My original consultant was the late Dr. Hart. He was a really nice guy who genuinely cared about my overall wellbeing, which is something I feel is lacking today. As I mentioned, lamotrigine managed my symptoms effectively for years, which is why my relapse about 18 months ago was such a surprise.
To be honest, my new consultant hasn’t provided me with any information about what actually causes this condition. I’m not sure if anyone really knows, but he has suggested trying blockers that are typically used for people with chronic pain.
Can I ask about your symptoms? No worries if you’d rather not share.
Hey, I hope you’re well. Sorry for the late reply. Have you had any recent updates with your new consultant since we last spoke? That is strange after all that time that you had a flair up out of the blue, maybe something stressful had caused it. I am familiar with the eye twitching. I hope you finally get some answers this year. I agree with the lack of understanding within the health care system lately. You made a note of epilepsy? I’m only asking because my mum developed epilepsy in her 40s and her brother has just been diagnosed with it in his 40s, I wonder if it could be related. Of course, I have had pins and needles, cramps and numbness in my feet for going on to 9 years, I get twitching in my body after walking. The pins and needles are in my feet every day all day, kind of gotten use to them. I trip up a lot but I can stop the fall. I am just waiting for an appointment to go over the results from my spinal mri and Emg nerve conduction test.
Still not heard from the neurologist about my follow up appointment. Obviously I have peripheral neuropathy in the knee which has been stated that doesn’t relate to over 9 years of pins and needles in my feet. All tests are clear. I have had no follow up, no medication and still suffering with the annoying pins and needles.