could this be ms??

New diagnosis and before diagnosis
1

hi everyone,

i really hope u dont mind me posting in here im just getting very despearate for answers and gps arent any help so far, i am 37 have 2 babies, and 2 teenagers. i have been ill for a a while now and struggeling to cope, or look after my family. some of my symptoms come and go, so far i have reffered to ent for dizziness (had this for over 2 years) but they said everything is fine…i also have gallbladder issues and waiting to hear about surgery for removal.

anyway my worrying symptoms are

constant dizziness

complete exaugastion to the point at night i can hardley move myself

brain fog that makes me struggle to think clearly, even things like forgetting where the light switches on my car are

pain at the right side of my spine

shivery feeling

pain in my left calf

difficulty moving my legs

a crawling numb tingly feeling on my upper back

i feel like i struggle to see sometimes, although i can its a strange strain that i cant explain

ive always had twitchy legs, but this feels like a butterfly feeling in them

i get odd things, like tingly tounge, or burning toes

simple things feel like massive tasks

i had a break from all this for a wee while, but it came back stronger

there will be more, i just cant think straight just now and a few times ive put my symptoms in a search its lead me here, ive been back and forth to the doctors for a long time, but as i have the gallbladder pain, and stomache issues all the above get ignored. i have begged them to help me, i have had loads of blood tests, and take vitamins and b12 injections but nothing is getting anybetter. i think the doctors think im exagerating, or put it down to stress as we lost our little girl nearly 4 years ago. but i know its not, i know theres something wrong and desperatly need some help.

any opinions or suggestions would be great

thank you to anyone who takes the time to read this

lisa x

2

Lisa, first of all I am really sorry to hear of the loss of your little girl.

I struggled with GPs for 2 years asking for neuro appointment. I ended up making a private appointment myself and lied about having a GP referral. I then got an MRI and after that I was taken seriously. My first point of advice with GP would to ask “How can you be 100% sure that my symptoms are only due to stress.” “I could have MS or even something more serious and am missing out on treatment to help stop the progression”.

Hope this works

Take Care

Moyna x

3

Hi Lisa, and welcome :slight_smile:

Neurology is complicated in that hundreds of different conditions share very similar symptoms and it’s only when neurologists put together someone’s history, symptoms and clinical signs (e.g. reflexes) and test results that they can get a good idea of what’s going on. Even then, it can be difficult to decide because some conditions can be very very similar, e.g. B12 deficiency and progressive MS.

I have to say that although your symptoms happen in MS, how you describe them doesn’t sound to me like how they happen in MS. This makes me wonder if perhaps some of the problem with your GP is how you are describing your symptoms? What we normally recommend on here is avoiding a long list of symptoms and sticking to the main ones. So, for example, quite a few of the symptoms you list could be due to fatigue, including the brain fog, difficulty moving your legs, struggling to see and simple things becoming massive tasks - so rather than list them all, just say terrible fatigue which affects your thinking and walking. (It’s even possible for fatigue to be behind sensory symptoms.) If your legs and calf pain are not related to your fatigue, then list them separately, but if one is worse than the other, focus on the worse one, etc. In that way, you’ll end up with a much shorter list and, although it sounds a bit daft, you are more likely to be taken seriously.

You mention that you are having B12 injections. Do you know if your B12 levels are improving? Vitamin B12 deficiency can cause all sorts of neurological symptoms and is often a cause of fatigue. If you haven’t had a blood test done recently, I think it would be sensible to get it done, just in case.

If your B12 levels are fine, then I would go and see your GP with that concise list of symptoms, if I were you, and tell them that you want a proper investigation of them. Be calm, polite and objective, but be assertive. The worst thing that can happen is that the GP says no. If that happens, you can always see another GP and even change GP practices if necessary. It may be that there is nothing wrong with your nervous system, but can the GP really be sure without it being properly investigated???

Good luck.

Karen x