EMG and NCT tests query

[Crochet_fan]

after over 2 years of waiting to be referred, i finally have an appt with neurophysology for EMG and NCT tests but they have booked the appt at 8.30 in the morning.

thing is that the symptoms of awful burning/frozen sensation which iniatially were only in my right foot (started about 6 years ago at least) gradually deteriorated into the leg and affect the entire leg up to the top of the thigh.

i get the symptom only very occasionally in my left leg. i get it in my arms when not covered in the evenings or during the day when the heating is not on, though they thankfully improve in my arms when i put layers on (they never ever do in my right leg, regardless of the amount of layers).

i have numbness in my right leg as well - only up to mid thigh and get pins and needles a lot though i get pins and needles and numbness in other body areas too. the right side of my face gets frozen and numb as soon as i get out if it is windy and temperatures are lower than 10/12 degres celcius.

for the last 7 weeks at least, a new symptom has started. i get electric shocks. absolutely everywhere, not just in the obvious body parts like legs, hands, arms etc, but also my back, my neck, my face and even my tongue and the back of mouth, not the tonsils as such but above that area. it is like torture and i really am not making this up.

the burning/frozen symptoms, the numbness and the electric shocks are there all the time, 24/7, but they get worse as the day goes on, and at this time of the day, it is awful.

i have fibromyalgia and also arthritis in both hips and both sacroiliac joints. again, the right side is the worst one.

the neurological symptoms have been going on for 6 years at least (in the foot, but as i said, they have deteriorated), but in the last 4 years, things have been so bad with all the different sources of pain that my mobility has been affected by about 90%.

i have tried so many different medications and combinations of meds: codeine, amytriptiline, naproxen, gabapentin, tramadol, pregabalin, duloxatine with nothing working and eventually stopped everything, and now am on morphine (slow release) but the doctor doesnt want to prescribe a really high dose (not sure i am allowed to say what dosage i am on) - it is higher than the maximum dosage of tramadol that i was on for nearly 4 years but although i am starting to notice a small improvement (first time in 4 years i can say that) following an increase yesterday, this is the highest the doctor will allow me to increase to, and this is not the level of improvement i had hoped for.

this is a temporary measure however, as i never wanted to go onto morphine anyway, just ended feeling so desperate, and this is whilst i am waiting for an appointment for a lidocaine infusion (referral only just been done), and pending an injection into the sacroiliac joint (my pain consultant says my BMI needs to be below 30 before i can have it but i am fighting against that as my GP examined my back and spine 2 weeks ago and said that there's no reason why i can have it now, plus i am doing the cambrige diet and losing weight (only way to lose weight with such restricted mobility), and i will start oxygen therapy once i have my adapted car but that wont be until early june. so the morphine is only a tempory measure.

sorry for the long overview above - the reason for this post is that i have now (finally) been referred for the EMG and NCT tests but my symptoms get worse as the day goes on and are worse at night but they have booked the appt for 8.30 in the morning.

thing is that i have had to fight soooooo bad to get them to refer me - the pain consultant initially referred me in november 2021 to a professor in neurology in london but that professor wrote back early Dec 2021 to say that the pain consultant needed to refer me to my local hospital (dont know why he didnt do that in the first place), and the pain consultant never did the referral. my GP chased and that didnt work. i asked the new pain consultant, that didnt work. i spoke to PALS informally, that didnt work. i submitted a formal complaint to PALS, and even through that process, they (the two pain consultants) have been working against me.

yesterday, i received an appointment letter for end of july. i wrote back last night that this was not acceptable and that it would be over 2 1/2 years wait by then, so i told them that if they didnt give me an earlier appt, i was escalating to the Ombudsman and my local MP.

so today i received a text to say they have booked me in for those tests in less than 3 weeks. i am obviously really pleased with that but i am really worried that the appt being in the morning is not going to show what is really going on. but i also dont think i can go back to them and argue about the appointment time.

has anyone had those tests in the morning despite their symptoms being worse at night and has that showed something on the tests?

i have been feeling so unheard and ignored. it is so completely against my nature to complain about anything. i still feel that the only reason they have finally done the referral and given me an earlier appt is for fear of me escalating my complaint but they dont believe that anything is wrong with me. and i am so worried that the tests are gonna prove them right because of the timing.

i am soooo not lying. those symptoms are awful and make my life unbearable. something is definitely going on. i hate labels but i want to be validated, and i want to understand how to move forward, and what can be done. i have heard several times (including yesterday) that there is nothing else that can be done in terms of pain management and i ended up telling my doctor that i wish i was a dog because then i could be taken to the vet and put down.

sorry, this has turned into such a long post.

[AtopicGuy]

I'm sorry you feel so awful. The worst of your symptoms may go away in the morning and come back later, but the kind of nerve damage detectable by EMG and NCT does not. Having waited so long for the appointment, it would be a tragedy to miss out. Best to get it over with. Good luck!

[Crochet_fan in reply to AtopicGuy]

Thank you very much for your kind words. yes, you are right, it would be tragic to miss that appointment after so long waiting for it. thank you for the reassurance. it's crazy to wish for them to find something wrong but something is wrong and i really need some answers, and some validation. thank you very much for your response.

[AtopicGuy in reply to Crochet_fan]

I sympathise. I have waited/strived for a diagnosis for years but still don't have one.

[Crochet_fan in reply to AtopicGuy]

i am so so so very sorry about that. it's awful to be in that situation and really hope that you get some answers yourself.

[mariootsi]

You will be fine having the tests in the morning. They still will show the nerve damage 💔

[Crochet_fan in reply to mariootsi]

thank you very much for the reassurance, i really appreciate it. i really hope the tests will provide some answers to those awful symptoms. thank you very much for responding.

[mariootsi in reply to Crochet_fan]

They should provide some answers. I hope you get some relief. Let us know

[Crochet_fan in reply to mariootsi]

Thank you very much Mariootsi. I will come back to update.

[nuigini]

OMG I'm so sorry to hear all that you have gone through, Totally appalling!! I recently had nerve conduction studies for bilateral leg issues that have been getting worse for 16 years. In all those years none of the numerous doctors suggested such a test. Fortunately, while wintering in Panama I mentioned my long standing issues to an Orthopedic Surgeon I was seeking on another matter, He was shocked that the test had never been done. I had the test the next week. I saw a Neurologist yesterday and have a confirmed diagnosis of Sensory/Motor Demyelinating Polyneuropathy/

As others have said, the nerve study results will be the same no matter what time of day the test is done/

Best of luck for a speedy diagnosis and treatment.

[Crochet_fan in reply to nuigini]

Thank you so much for your kind word and understanding. i am really sorry that you were treated so appalingly yourself and had to waut 16 years for the test and a diagnosis. there is so much wrong in the medical system.

was the diagnosis made solely on the results of the nerve conduction tests or was it through a mixture of the tests and talking through the symptoms? i am pretty sure i have the sensory type of peripheral neuropathy but i have weakness in my leg and my arm, and have had occasional balance issues which a few years ago led to my doctor referring me for a MRI to check i didn't have MS (which i don't). but at the time, because the burning frozen pain in my foot had already started, i asked if it could be peripheral neuropathy, and she almost laughed in my face. so i had the MRI which thanfully ruled out MS and i never mentioned peripheral neuropathy again, until the pain consultant mentioned it in october 2021....

anyway, sorry, i didnt mean to write a long message again. i just wondered whether the nerve conduction tests can tell which type of neuropathy it is or only if there is damage in the nerves, then if the type of neuropathy is assessed by the neurologist through assessment of symptoms that you describe....

also the appointment they gave me at the end of july was with a Professor of Neurology and the one they re-arranged for much earlier is with a Doctor of Neurology. i dont think i care too much as i want the earlier appointment more than anything but do you (does anyone) think that this is a significant difference?

[nuigini]

The nerve conduction study confirms polyneuropathy. In my case they were able to conclude sensory/motor demyelinating polyneuropathy. I am now going through other diagnostic tests to determine the cause and treatments.

[nuigini]

I should add that some of my symptoms include: increasing bilateral heaviness and weakness in both legs, difficulty climbing stairs and getting in and out of vehicles, fatigue, numbness and tingling in both feet, numbness down my entire right leg over the last few years, balance issues in the last year or so requiring the use of a cane when out shopping or walking any great distance.

[Crochet_fan in reply to nuigini]

thank you very much for coming back to confirm all this.

for me, the right side of the body is the main issue in terms of sensory issues (burning / frozen issue and numbness) though now experiencing burning/frozen issues in my arms too.

but pins and needles and numbness is in other parts of the body.

i have had muscle weakness in my arms for years, particularly the right one where i have to rest it on the window sill when i wash my hair, and sit down and support it on the sofa armrest when i brush my teeth

before my mobility issues got so bad 4 years ago because of my hip and sacroiliac joint (i cant go up the stairs at all), i struggled with muscle weakness in my legs (or heaviness as you mentioned) going up the stairs for years but that was never an issue when walking on flat ground (just going up the stairs - even one flight of stairs).

i didnt have any issues going in and out of cars and didnt need a cane or stick though - now i do because of the pain in my hip and sacroiliac joint but not to do with muscle weakness (i dont think).

[Crochet_fan]

i wrote my original post back in March 2024.

i had the EMG and NCT tests done in april - no nerve damage..... so upset

i know, that sounds crazy to be upset about that, but as expected, the neurologist told me today that no nerve damage means no peripheral neuropathy, despite all my symptoms

i dont want a diagnosis for the sake of a diagnosis but i am at the end of my tether. i am in excruciating pain, the pain is torturous, my symptoms are excruciating, and there is no explanation.

i did some research and i read that you can have peripheral neuropathy even of the nerve studies tests show as negative as maybe the affected nerves are not ones that can show in the nerve studies. the neurologist disagreed with that.

my symptoms are:

7 years ago, i started getting a burning frozen pain skin sensation in my right foot.

since 2021, that awful burning frozen sensation is in my entire right leg, as well as in both my arms and hands, and my right cheek

since feb 2024, i have been getting electric shocks (as if someone is zapping me with an electrocuting device) everywhere in the body (legs, arms, tummy, back, neck, face which include eyeslids and just under the eyes, and inside my mouth)

since around feb 2024, the tip of my tongue (about an inch in length) goes numb

in addition, i have pins and needles, which are very prickly, so much of the time, in my hands and feet. also, 9 times out of 10, when i wash my hands with warm/hot water, it makes the pins and needles in my hands get even more intense and pricklier.

change in temperature from cold to hot makes the pins and needles anywhere in the body get worse, as well as the electric shocks go crazy. when i say cold to hot, it can be from 15degrees celcius outside to 22 degrees celcius inside. i am not necessarily talking about going from minus 10 degrees celcius to + 25 degrees celcius though that would defo cause a huge explosion of pins and needles and electric shocks

also, the wind or simply the air on my skin causes the burning frozen skin to get worse, and again, it doesnt have to be a low temperature at all. it is currently very hot in the uk, and 29 degrees celcius wind on my face caused the the frozen burning pain to get so bad today on my face and my arms

in addition, colder temperatures, though not that low as even 15 degrees celcius does it, causes my right cheek to go frozen numb (different to the frozen burning sensation pain and in addition to it)

i have the heating on in my flat if the temperature goes below 23 degrees celcius. i constantly have a blanket on my legs (on top of thick layer trousers like fleece) even when it is a hot day like today. i also wear sleeves all the time at home. i didnt when i went to the hospital as it was so so hot but i was hurting so much. i still hurt terribly with the layers but it makes me feel like i am doing something to protect myself as cold air intensifies the sensation.

i have weakness in my right leg, though i have sciatica, as well as deteriorating arthritis in my hip and sacroiliac joint. i have balance issues where i am simply standing, withouth moving or anything and i will lose balance to the point someone has to catch me/grab my arm. i have thankfully not fallen on the floor at any point, which is so fortunate and lucky coz with all my issues with mobility, i have no idea how i would stand up again.

the neurologist did neurological tests. i had an MSK appt a week ago and he did some there as well.

at the MSK appt, when he checked the reflexes on my left leg, all good, immediate and strong reaction. when he checked it on my right side, no reaction. he checked it a second time. no reaction. he did that examination with me sitting down.

today, the neurolologist did the reflex checks as well. i was lying down. when he did the left leg and left foot, there was an immediate and strong reaction. when he did it on the right side, no reaction, so he tried, again, and again, and again, and again, he made me sit down, he made me put my arms in a certain way, and grab my hands, clasp them together etc, and he tried again and again and again, and eventually, he got a little reaction. so he said, ah good, normal reflex in right leg.

i am not a doctor, and he clearly did get somewhat of a reaction eventually, but he had to try sooooooooooo hard to get it. to me, that doesnt mean it is really 'normal'. normal is like my left leg. nornal would have been even if he got it strongly after a couple of tries or something.... but he had to try sooooooooo hard.

unfortunately, i was so shocked that i didnt say anything when he said it was normal.

i do not have have diabetes, but i have an under active thyroid condition which was diagnosed 33 years ago. i have been on medication for it since i was 17 years old.

i recently had my B12 levels checked and they were normal

i have had years of low iron levels. i had to have an iron infusion a few years back. when they are in the normal range, they are only on the edge of normal. i dont iron supplements as i dont tolerate them.

i have low levels of vitamin D - i had to 15,000 units for some time but that was eventually reduced and i have been taking 800 units daily that the doctor prescribes

i have fibromyalgia and the neurologist said that pins and needles could be due to fibromyalgia.

ok, maybe, but that but that doesnt explain the other awful and torturous symptoms like bruning frozen skin sensation. and the fact that it is every day the same, it is there when i wake up but mild, and it gets worse and worse as the day progresses.

so i am wondering if anyone has been diagnosed with peripheral neuropathy when their nerve studies tests came back negative (no nerve damage. was that diagnosed due to symptoms or other tests being carried out?

is there anyone with diagnosed peripheral neuropathy that identifies with my symptoms?

is there anyone with fibromyalgia who identifies with the symptoms i have (not just the pins and needles but the burning frozen skin, the electric shocks etc)

the neurologist has discharged me and he is sending me back to the pain clinic. over the years, i have tried amytriptiline, gabapenting, pregabaline and duloxatine. none of those have helped in any way.

i read about IVIG treatment for peripheral neuropathy. has that helped anyone who has frozen burning skin sensation and electric shocks?

is there anything else anyone can contribute - ideas, thoughts. i am in the UK.