Advise on painful Neuropathy, worried ? — Scope | Disability forum
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Advise on painful Neuropathy, worried ?

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Mummyof2XXX
Mummyof2XXX Community member Posts: 4 Listener
edited October 2021 in Rare, invisible, and undiagnosed conditions
Hi everyone, New to forum, joined just now in yet another search of desperation to find others dealing with something similar and looking for advice.
Back in April last year, I had a very sudden onset of symptoms, it started with intense bursts of a deep uncomfortable itch sensation. It was mainly on my upper arms, but lower legs too. I went to my Gp and was sent for numerous blood tests, full blood count, allergy, auto immune,diabetes, all came back clear, I even had a lymme disease test.
2 weeks in to the onset of symptoms I started getting very large painful inflamed spots on my body, one of which was in my scalp. But they healed and went away after a few weeks. I then started getting small pink inflammed dots on my chest that would come and go. 
After these symptoms, I started getting painful shooting pains in my hands and feet. The pain is so bad it takes my breath away for a second.
I have had a MRI of brain and spine and 2 EMGs. All came back normal.
As the months have gone one, I am suffering pain and weakness through my arms and the random shooting pains in hands and feet have got more regular.
I am taking pregabilin, but not stopping this pain.
I am a 33 year old female with no previous medical problems other than a pain in lower pelvis for past 2 years, but had a clear MRI so out it to bed and living with it.
My life is happy, no stress triggers and I can't work out what could have caused this and neither can doctors.
I have seen many consultants and now due to my neurologyst performing EMG recently and results coming back normal, she is basically sending me on my way with meds and closing the door.
I am struggling to live with this. Not only because of the pain, but also the unknown of what is going on in my body.
I saw one consultant a few months back and he offered me a CT scan to check for anything that may be going on internally that could be causing neuro pain as result, as he said sometimes if there is something serious going On, it can cause neurological symptoms in rare cases.
I asked to think about it as wasn't keen on having radiation unless absolutely no other option, and asked if I could have it after I had other tests first that other consultant was doing.
Little did I know that I would be discharged from him and lost chance of CT scan.
So now I have had to be 're referred back to the department of haematology and seeing a new consultant as other DR has left the hospital, and the new one isn't keen on sending me for CT scan after all of that.
So I am now left with pain getting worse, shooting pains through hands and feet, and absolute no idea why. 
I am really worried about something being wrong internally like the dreaded (cancer) as I obviously have read online about neuropathy, and seen it can cause this type of symptom as a compilation, just as the origional consultant said. 
I have 2 small children, no history of anxiety or depression and feel like that's how they are looking at me now in every single appointment. 
I am tierd tired and emotional over all of this. I love looking after my health so the unknown is crippling.
The symptoms of rash and spots at the beginning are very strange and confusing, it was unusual but may have absolutely nothing to so with this whole neuropothy.
I should add that on and off the past year I have experienced a very intense stabbing pain in spine that radiates around my ribs, it comes and goes every couple of months but it is awful. Yet spinal MRI was normal.
Am I missing something? Anyone else have any advice?
I'm sorry for such a long rambling post, but I need to find people to talk to and give a clear understanding of what's gone On  (I hope I have been clear)
Thank you so much for reading x
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  • jarwyn
    jarwyn Community member Posts: 2 Listener
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    Hi. I read your post with great interest, and a lot of sympathy. My wife (57) suffers from what the specialist terms 'PolyNeuropathy' which - from what I can understand is 'many neuropathies'. She has many (but not all) of the symptoms you describe and has had this for over 10 years now. To begin with, they didn't know what it was and this did frustrated her but once they were able to put a 'label' on her condition she felt better (about at least knowing what the problem was).

    I wish I could give you some life changing information or advice about treatment, but the sad fact is that it is quite rare and not easily treated. I attend the regular hospital appointments to see the neurologist and each time he mentions that it is a case of 'treating the symptoms' not curing the condition.

    The chap my wife sees is the No 1 Neurologist at the Walton Centre in Liverpool and he explained it very well to us when I first went there. He compared it to the electric power cable (for things like Kettles etc). He said that the outer covering was intact but that inside the 'wire' was breaking down. This is what is happening to the nerves in my wife's hands, arms, feet and legs.

    We keep a keen eye on my wife's health and we discuss EVERY ache and pain with the neurologist to first of all rule out the neuropathy as a cause. For example, a few years ago she was having stomach pains - we ruled out the neuropathy and any side effects of the tablets she was on. Turns out it was Gallstones.

    Quite happy to answer any questions you may have. Can't promise to know all the answers but I'm happy to try. Hope this helps?
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  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
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    Hi @Mummyof2XXX and @jarwyn, and a warm welcome to you both!

    I'm so glad to see you've found each other and can share your experiences. I wonder if @Nick_Butler would be interested in this too?

    Do bear in mind that the community is not intended to be a source of medical advice and you should see your GP or a medical professional about any concerns to do with your health. However, I know how valuable it can be to talk with others who understand, and I'm glad you can share your experiences! Please do keep us updated and we'll advise where we can. 
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  • Mummyof2XXX
    Mummyof2XXX Community member Posts: 4 Listener
    edited February 2019
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    Thank you so much for your lovely reply @jarwyn I'm sorry to hear of your wife's long history with her neuropathy.
    It's a very lonely thing to go through, I can Imagine your support is so important to your wife, sounds like you are really there for her.
    I'm lucky I've got my husband, but with him always at work and I'm bringing up 2 small children, it's a real struggle going to appointments calm and being able to function properly with  2 year old running around.
    A time in my life where I want to be enjoying my young family, I get very emotional the fact this is really taking over.
    Not having a clue what is causing this, my head is spinning and I'm struggling to cope with it all to be honest.
    I have days where i get up and try and get through it, but the pains kick in like little electric shocks through my hands and feet, also arms and legs and some are so severe, I end up spiralling down hill again with worry.
    I live in South south east london, and have so far seen 2 neurologyst. The 1st one after I had a normal EMG, told me to basically shut the door on the way out, so I asked for a 2nd opinion and the woman I am seeing at the moment specialises in epilepsy. She is very good but I don't feel she has seen many patients in my situation therefore want to find someone else, but I know the doctors will frown and tell me I need counselling or something along those lines.
    Nearly 11 months of it, which has felt a life time, and my symptoms have become so much worse.
    I want to book a family holiday, go back to my lovely city job and look forward to my future, but living this unknown is the hardest thing ive ever dealt with.
    May I ask how your wife's symptoms begun, and what her symptoms have progressed to? Did she find herself having to fight to see other consultants for different opinions and what type of tests did they do?
    Your advice is really appreciated, Thank you: )
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  • Mummyof2XXX
    Mummyof2XXX Community member Posts: 4 Listener
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    Thank you @Pippa_Scope
    It's a real relief to find somewhere to talk and maybe get some valuable advice.
    Thank you for the warm welcome :)
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  • jarwyn
    jarwyn Community member Posts: 2 Listener
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    @Mummyof2XXX - I wasn't with my wife when she first started getting symptoms, but she explained it to me like this. It started of with just a mild sort of 'stinging' sensation in her hands if I remember correctly. Her GP thought it was a 'sting' anyway ... but after a few months it hadn't eased and got more severe. She was referred to the neurology centre at Walton (Liverpool) and was lucky enough to be seen by a genuinely lovely German doctor (neurologist) and he began doing tests.

    When I met her, she had just been diagnosed and explained it to me thus "You know the feeling you get in your hands and feet, after they have gone numb and then they start to get the blood back into them ... that is how my hands and feet feel ALL the time".

    Since then, this sort of numbness has progressed up her arms and legs (up to her knees and elbows now). The day to day reality of this is that she has very little 'feeling' in her hands and legs. This makes her wobbly on her feet (she can't feel when her foot is actually in contact with the floor) and she struggles with hot items or sharp objects - she can burn or cut herself easily without realising. It sounds a lot worse than it is because basically, she 'compensates' for it. So instead of standing up and dashing away, she will pause for a few seconds until she is sure she has her balance. We buy suitable kitchen aids to assist her and she manages very well.

    What we've found is that it's really important to keep a positive outlook and focus on what she 'can' do not what she can't. She has bad days, and on such days we realise that it's important for her to rest up. But equally, on good days we try to go out as much as we can and keep trying to enjoy life.

    All I can say to you is, don't give up - keep pestering the GP and specialists.
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  • SunshineLou
    SunshineLou Community member Posts: 79 Pioneering
    edited February 2019
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    Hi @Mummyof2XXX I had a very rare Neurological disease nearly 5 years ago now and have many many symptoms and life long problems. I have brain and spinal cord damage which is irreversible.
    I always say to people to try CBD.

    Do some research, as it’s helps with many many problems including Neuropathic pain, fibromyalgia type pain etc etc... the list is endless to be honest and far to much to go into here.
    I personally take a brand called Canabidol. Fully certified and batch  tested for potency.

    It may help you and is certainly worth a try considering how you describe your pain!

    Really hope you find answers and a solution that works for you!
    Lou x x
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