Awaiting Neurology Referral Please Help

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Bluebird647
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Awaiting Neurology Referral Please Help

Post by Bluebird647 » 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. :roll:

Blue x

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Scott1
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Re: Awaiting Neurology Referral Please Help

Post by Scott1 » Mon Sep 21, 2020 1:20 am

Hi,
I'm glad you have found a GP you like.
You have had a really difficult history.
It's impossible for anyone here to diagnose but we can make some suggestions.
Firstly, did your burns resolve themselves or leave some damage?
You mentioned that at one point your ankles were blue. Is that still the case?
You also mentioned that you woke up in the night struggling to swallow. Are you sure you were not struggling to breathe? If you were, that would sound like sleep apena. It might be worth while seeing both a sleep specialist and ENT surgeon.
The combination of these two issues plus having recently given birth makes me wonder about your weight management and whether you have had any diabetic testing. Ankle supports, compression gloves and crutches also make me wonder.
I'm not sure you will find your answer will come from a neurologist.
Regards,

Bluebird647
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Re: Awaiting Neurology Referral Please Help

Post by Bluebird647 » Mon Sep 21, 2020 1:59 am

Hi There

I have been tested for Diabetes and it has came back negative, I have just spoken with my doctor who suspects MS with an input of Fibro also I have been referred to neurology but there is a 5 year waiting list here, I may consider paying privately for a scan. My burns are all resolved and healed completely. My sister has sleep apnea this is defo not like sleep apnea I may have worded it wrong but i meant struggling with swallowing when I wake, Thank you for your input I really appreciate it

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Scott1
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Re: Awaiting Neurology Referral Please Help

Post by Scott1 » Mon Sep 21, 2020 4:11 am

Hi,
A five year wait sounds appalling. If your doctor suspects a neurological issue then do what you can to jump the queue.
I had sleep apena many years ago. It was due a deviated septum (the inside of my nose was bent). When I woke up I often thought I couldn't swallow my own spit and it took some time to realise I was gasping for air. I needed an operation to solve it.
My GP never thought of it but an ENT surgeon looked up my nose and diagnosed it immediately.
Anyway, jump the cue on the scan.
For your bladder, ask to see a Urologist, irrespective of what a neurologist finds. There are several different reasons for incontinence. A urologist has a range of options. If you did have a neurological problem causing that problem, a neurologist would send you to a urologist.
Regards

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NHE
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Re: Awaiting Neurology Referral Please Help

Post by NHE » Mon Sep 21, 2020 5:48 pm

Welcome to ThisIsMS Bluebird647.
Bluebird647 wrote:
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 blueish color is not normally associated with neuropathic pain due to MS. Sometimes, people experience Raynaud's Syndrome, but this usually causes a cold, numb sensation where the affected body parts, usually fingers or toes, turn white. I'm not a doctor, but to me the blueish color is suggestive of a circulatory issue.

Bluebird647
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Re: Awaiting Neurology Referral Please Help

Post by Bluebird647 » Mon Sep 21, 2020 11:13 pm

The blueish colour only happened back when the pins and needles caused me to break my foot. That is not the case now at all. The doctors did look at Raynauds that wasnt found to be the cause it completely disappeared. The pins and needles have really appeared noticeably since Feb/Mar of this year. I am having to pay to go private here in N.I due to the waiting list even private it is at least 6 months but after so many years struggling to get anyone to listen ill take it. Thanks for all your replies. Its become very apparent to me and from personal experience as my sisters father has MS that those diagnosed can have very varying symptoms to one another.

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