Awaiting Neurology Referral Please Help
Posted: Mon Sep 21, 2020 12:44 am
Hi there!
Looking to chat to anyone who can relate and offer support as I am feeling very alone right now.
Bit of back story I was seriously injured in a house fire over 10 years ago with 45% burns, I lost all mobility and speech. I spent 12 weeks in intensive care battling organ failure, sepsis and mrsa.
Fast forward to Just prior to Dec 2018 I mean I've always had a level of pain but this is where it all began to take a turn. I started to complain of severe pins and needles in my feet to the point sometimes my feet would be purple/blue. The GP ran bloods and didn't seem at all interested blaming it on my prev accident. Not long after this I stood up on my foot not realising it was completely numb and broke it. From Jan 2019 Fatigue and pain worsened, mental health such as my aniexty, depression and PTSD were increasingly worsening. I had very irrational behaviour even myself couldn't explain.
May 2019 I gave birth to my daughter since the accident I struggle to get pain relief which will take effect and be consistent due to high doses of ketamin, tramadol, Amatriptyline, morphine the list goes on. All entry to my veins had to be via my neck. The epidural failed and I had a spinal block.
I 'thought' you know ive just had a child im not sexually interested its normal... nearly a year later here I am... I get no satisfaction, no climax, I end up in tears, I just cannot have intercourse due to disinterest and I myself didn't know why and felt so guilty. Until I read about this symptom and it all clicked. I also assumed bladder weakness would be due to my pregnancy but this did return to normal and has most recently been extremely weakened I wear incontinence pants and I am up about 4-5 a night to urinate.
Fast forward to Feb 2020 the pins and needles began to worsen and I started having like episodes of dizzy spells, again my GP seemed disinterested. My eye sight is worsening while driving, writing, texting watching tv yet all eye exams continue to come back clear this has been over a number of years.
I am now scared from Feb to Now Sept 2020 I am in severe, severe pain. Constant burning and stabbing sensations, the pins and needles and loss of sensation has now appeared in both feet daily and now both hands. Last night it started to come in some kind of wave across my arms legs feet and hands. I have recently moved from one area of the UK to another so I am dealing with a new GP who is great she recently ran bloods to see my inflammation markers but all appeared normal. Last night I began to get spasms in my left side of my face and hand this progressed to my right side overnight. I awoke at 4:10 am this morning struggling to swallow and began to panic due to previously having a tracheostomy tube in it brought back horrendous sensations I had previously experienced. My GP has prescribed 150mg Maxitram as 50/100 wasnt cutting it and Naproxen as well as Sertaline and Paracetamol which is the first pain killer to actually make any difference at all to me.
I have suffered with memory issues for many years now which was always put down to PTSD or my accident, but this is progressing also. Diarys, Clocks, Alarms, Calendars just don't work. I am constantly loosing things and becoming very easily upset frustrated and angry, I make appointments and as soon as I hang up the phone Ive forgotten and need to call back, My friends have expressed concern about my confusion and mixing up dates and times, no one will listen to me i've been complaining about this for years and due to my age I have just turned 30 it gets shrugged off and I am told everyone is forgetful. But not like this, this is heartbreaking and embarassing.
Since Feb to now my mobility is rapidly worsening, I have crutches to use to get about I am concerned as I am now struggling with my 16 month old so nursery helps me massively. I wear ankle supports every day as the muscles are weakening and compression gloves on my hands.
Can anyone relate? My sisters dad has MS and its very progressed but nothing like this. I am in agony and im happy to have found pain relief which seems to be working but i still have no answers, I have written a letter to my doctor detailing my symptoms and concerns and requested a referral to neurology years ago i did have a referral but loan behold i forgot the appointment.
Blue x
Looking to chat to anyone who can relate and offer support as I am feeling very alone right now.
Bit of back story I was seriously injured in a house fire over 10 years ago with 45% burns, I lost all mobility and speech. I spent 12 weeks in intensive care battling organ failure, sepsis and mrsa.
Fast forward to Just prior to Dec 2018 I mean I've always had a level of pain but this is where it all began to take a turn. I started to complain of severe pins and needles in my feet to the point sometimes my feet would be purple/blue. The GP ran bloods and didn't seem at all interested blaming it on my prev accident. Not long after this I stood up on my foot not realising it was completely numb and broke it. From Jan 2019 Fatigue and pain worsened, mental health such as my aniexty, depression and PTSD were increasingly worsening. I had very irrational behaviour even myself couldn't explain.
May 2019 I gave birth to my daughter since the accident I struggle to get pain relief which will take effect and be consistent due to high doses of ketamin, tramadol, Amatriptyline, morphine the list goes on. All entry to my veins had to be via my neck. The epidural failed and I had a spinal block.
I 'thought' you know ive just had a child im not sexually interested its normal... nearly a year later here I am... I get no satisfaction, no climax, I end up in tears, I just cannot have intercourse due to disinterest and I myself didn't know why and felt so guilty. Until I read about this symptom and it all clicked. I also assumed bladder weakness would be due to my pregnancy but this did return to normal and has most recently been extremely weakened I wear incontinence pants and I am up about 4-5 a night to urinate.
Fast forward to Feb 2020 the pins and needles began to worsen and I started having like episodes of dizzy spells, again my GP seemed disinterested. My eye sight is worsening while driving, writing, texting watching tv yet all eye exams continue to come back clear this has been over a number of years.
I am now scared from Feb to Now Sept 2020 I am in severe, severe pain. Constant burning and stabbing sensations, the pins and needles and loss of sensation has now appeared in both feet daily and now both hands. Last night it started to come in some kind of wave across my arms legs feet and hands. I have recently moved from one area of the UK to another so I am dealing with a new GP who is great she recently ran bloods to see my inflammation markers but all appeared normal. Last night I began to get spasms in my left side of my face and hand this progressed to my right side overnight. I awoke at 4:10 am this morning struggling to swallow and began to panic due to previously having a tracheostomy tube in it brought back horrendous sensations I had previously experienced. My GP has prescribed 150mg Maxitram as 50/100 wasnt cutting it and Naproxen as well as Sertaline and Paracetamol which is the first pain killer to actually make any difference at all to me.
I have suffered with memory issues for many years now which was always put down to PTSD or my accident, but this is progressing also. Diarys, Clocks, Alarms, Calendars just don't work. I am constantly loosing things and becoming very easily upset frustrated and angry, I make appointments and as soon as I hang up the phone Ive forgotten and need to call back, My friends have expressed concern about my confusion and mixing up dates and times, no one will listen to me i've been complaining about this for years and due to my age I have just turned 30 it gets shrugged off and I am told everyone is forgetful. But not like this, this is heartbreaking and embarassing.
Since Feb to now my mobility is rapidly worsening, I have crutches to use to get about I am concerned as I am now struggling with my 16 month old so nursery helps me massively. I wear ankle supports every day as the muscles are weakening and compression gloves on my hands.
Can anyone relate? My sisters dad has MS and its very progressed but nothing like this. I am in agony and im happy to have found pain relief which seems to be working but i still have no answers, I have written a letter to my doctor detailing my symptoms and concerns and requested a referral to neurology years ago i did have a referral but loan behold i forgot the appointment.
Blue x