I have no answers, please help if possible.

Hi Everyone,

I am sorry for the long Post. I am literally at my wits end. For the past year I have been experience a number of symptoms. The main one being tingling and numbness in my arms and legs as well as jerking, twitching and muscle spasm. This has been constant. I have had a few episodes where it will all of a sudden come on as an episode where I will shake as if I have low blood sugar and I will lose feeling in my whole body and become disorientated and dizzy. For the past few days I’ve been feeling like I’m struggling to breathe as if someone is sitting on my chest but this has been intermittent.

Other symptoms have been: dizziness, Itchiness inside head, limbs spine, Crawling under skin & like being tickled by hair, Headache After I eat, cough coming and going, Blisters inside mouth, Lymph nodes up,

Shooting pains, Numbness in fingers, toes and face

Stuff muscles, affecting mobility, Slurring and mixing up words, Nausea, Extreme pain like band around waist, only let's up on rest, Extereme fatigue, Bladder irritation, Diarrhoea/constipation intermittent amongst others.

I have had MRIs and have been told I don’t have MS and blood tests that have apparently come back clear. Despite this being debilitating doctors have given up on me and said I will learn how to manage my symptoms and actually said “you are what is called a medical mystery”. I don’t have anxiety, well I do but related to being so ill all the time. I worry constantly that I am going to die or end up completely unable to look after myself. I cry to myself often when I’m alone but have been putting on a brave face to everyone else. I can’t do it anymore.

I don’t know what to do next or what I can ask the doctors to look at that may have not been looked at before? Has anyone else experienced this? I have read that MS can often take a very long time to diagnose and people are often misdiagnosed. To be honest, it’s not so much that it could or could not be this but it’s more the not knowing and feeling like whatever it is is progressively making me worse. I cannot take this limbo anymore.

Lots of this may seem like babble but I’m probably 1. Desperate 2. Emotional and 3. Tired of it all at the moment.

Thank you for reading.

4 Replies

  • Sorry to hear about all your worries. I have peripheral neuropathy and take GABAPENTON which causes me to forget words but it helps the pain good luck.

  • Hi MrBevan,

    Sorry to hear these issues - it's not an easy journey. I can relate to a lot of what you are saying and your symptoms - at the moment my issue is weakness pretty well all over including legs and arms. I like you have always been concerned about MS but again my neurologist tells me its not MS and is PN. I've also developed an annoying internal tremor in sporadic places anywhere from my lips, face, chest to my groin!! Take comfort from previous MRI that you have been told it's not MS but symptoms of PN are similar in a lot of cases. Some days i just feel like giving up but we've got to keep going!! Arrange for an appointment with a neurologist and plan to see them every 6 months for an update on your condition. The difficulty is that there is not really any specific treatments - it seems it's more hit or miss and some things work for others and not some. Something else to be hopeful of is that if your situation is not positively diagnosed then this situation could with time repair itself, but it will take time.

    please keep us posted - good to hear from you.


  • There are important tests that will only be done by your GP if you ASK :-) B12 - Folate - Ferritin - VitD. If low in their ranges then many of your symptoms can be explained. B12 needs to be around more than 500 - Ferritin and folate must be at least mid-range and VitD needs to be around 100.

    Docs are not trained at Medical School about Nutrition and how to supplement. Big Pharma has a pill for everything !


    Scroll down in the above link to read the signs and symptoms of B12 Deficiency - neurological ones come first.

  • Just to say I'm following post

    In same situation, I could have written that myself!

    Let me know if they finally find something


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