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Does it sound like MS?

Since March I have been off-balance every single day, at all times when upright. I am not dizzy and generally feel better when lying down but when I am upright I feel like I am leaning to the left. I cannot ‘walk a tight-rope’ line with one foot in front of the other without falling to the left.

Originally the GP said anxiety.

Two months later the GP agreed to refer me to an ENT.

Yesterday I had my ENT appointment and he said it seems Neurological.

I know it is going to be such a long wait now to see a Neurologist.

I feel do distressed being out of balance all the time. I am really struggling with my work and life and looking after my children.

My friend told me if I go to A&E and tell them the balance is worse then they will give me an MRI straight away.

I don’t know what to do. I don’t think what I have constitutes an emergency but if it’s something like MS or a Brain Tumour, I might be dead or seriously ill by the time I ever get to have an MRI on the NHS waiting lists for around here. Even the ENT said to expect a long wait :frowning:

I’m really scared how long it’s all going on for with no hope of diagnosis.

Hi when I was referred to a neurologist the doctors also referred me for an mri scan as well. I had to wait 3 weeks for my scan which I had Monday but now haft to wait till end of Sept to see a neurologist but may get an earlier appointment if the neurologist thinks I may need to be seen sooner. So maybe get ur Dr to refure u for an mri also then it will be ready when u have a neurology appointment which will be more beneficial, hope this has helped Take care

I can’t believe all these horror stories on here from people waiting for MRI scans, appointments with specialists and so on. I went to my doctor with balance issues, numbness down one side and pain and numbness in my face back in May. She told me i needed to go straight to A&E where she had arranged for a Neurologist to see me. She even asked if i needed an ambulance to get there!!! That was my first major scare!!! I spent 2 days in hospital having different tests and an MRI scan. The neurologist was waiting at my bedside when i came back from my scan. He told me straight away it was highly probable i had MS, second scare!!!

He arranged an appointment for a Lumbar Puncture which happened 2 weeks later. Now only 2 months later i have been seen by a MS specialist who has diagnosed me with RRMS. I thought the 2 months or so i have been having tests and seeing different specialists was an eternity so i cant imagine what the rest of you are going through.

Max

I went to a and e when my gp put my balance issues down to weight even though I lost 3 stone so off to a and e I went doctor was nice and saw problems but he couldn’t help me as it wasn’t emergency he was right. I changed gp in jan he ran bloods then referred me to neurologist I only waited a short time 3 weeks he checked me out and said ms or artharitis in neck but he highly doubts it. He then ran bloods ans said I’ll need MRI LP and VEP I went for MRI May and VEP and LP last week now waiting for results my neurologist is a ms specialist so my tests was very quick. I was going to my old gp for a year so I struggled really bad due to my walking no better now either but with physio once referred I’m sure it will help.

I had a really bad night last night. I was so freaked out by how off-balance I was. My legs felt nearly impossible to move and I couldn’t walk in a straight line. I went to A&E desperate for some help and was seen by a Doctor there who did a urine sample even though I told her it was not a urine infection and then told me ‘It’s probably because you are on your period’.

This morning I feel even worse, staggering aroun exhausted. Sweating like I’ve run for miles just to walk around the house. My hands feel really weak and even typing is an effort. I feel like I could lie down on the floor and never get up again.

It’s so scary knowing that I just have to live in this state until I can eventually see a Neurologist on the NHS.

I’m sorry you’re having such a tough time at the moment. First things first, it is very unlikely you have a brain tumour and if any of the doctors you’d seen suspected such a thing, you would have been sent as an urgent referral straight to a neuro, not to ENT, so cross that one off the list of possibilities. MS is rare if you look at the figures for the population as a whole, but what you have could be any of a number of conditions that all have overlapping symptoms. It really does need a neuro to sort out what’s going on in your body and to determine what’s wrong. The referral is in the system, if I understood your first post correctly.

If you do have MS, and it turns out that you are having a relapse, you could be better by the time you see the neuro. The majority of people diagnosed with MS have the relapsing-remitting sort where they have a relapse lasting from a few days to weeks, then they recover to almost where they were and they remain well for months or even years until the next relapse.

What will help your neuro reach the correct diagnosis is if you keep a symptom diary and take it with you when you see him. Write down each symptom, when it started, if it is constant of intermittent and if you notice obvious triggers for any variations, record them. When he starts to ask about your symptoms, this will help you give a more detailed history and will make it less likely you forget to mention something.

As for the balance, have you considered a walking stick? They are readily available on the internet and there are websites that tell you how to determine what height it should be and how to use one correctly. I wasn’t thrilled when I started using a walking stick, especially as neither of my parents uses one and they’re both in their 70s, but I’d rather use a walking stick than lurch drunkenly all over the place and fall over.

(((Hugs)))