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.