Hi everyone, I really need to let go of what I am thinking and what I am feeling. I’ve been going through an emotional and physical rollercoaster all year. It feels like it is never ending. I have so many symptoms of MS, my dad has MS too. i’ve had brain and spine and thoracic scans and all normal back in May and June of this year. Things are not getting better. It’s getting worse. Every time I see a neurologist
I am told this is not MS. The last neurologist said vestibular migraine. How can vestibular migraine give you tight thigh muscles, deep pains in my legs, weak and heavy legs and all these crazy feelings all the time. I just don’t know where to go or turn anymore, my mental health is slowly declining each and every day, I don’t know how much more i can take. Please help and advice is needed? Many thanks for reading.
Hi Paul, I understand your frustration. It took 22 years for me to get a diagnosis.
I had typical PPMS symptoms, but because all scans etc were normal, they wouldnt commit.
I took myself to a specialist neuro centre in Liverpool and got diagnosed.
boudsx
It is a very uncomfortable situation that you are in. You have put a lot of effort into trying to resolve the discomfort with some kind of diagnostic resolution that at least breaks the tension and gives you something new and concrete to deal with. The most recent consultation tried to give you that, but it has not provided you with much relief by the sound of things.
I’m not sure that there is much more you can do right now to escape from your discomfort, feelings of chronic uncertainty and the suspicion that you are not properly being listened to and that there is more to uncover than has yet been found. May I suggest that you just need to sit with that for a bit? Give yourself some time and space to process the past few months. I know how difficult that sounds, given your ongoing physical signs and your fears and frustration. But when you’re low on options, sometimes giving it time is the best course available. Maybe you’ll turn out to have been right all along and maybe you won’t: as time unfolds, you will learn more, one way or the other. For now, I think you have exhausted yourself enough. In your shoes, I would be inclined to step back for a bit and regroup as best you can.
@alison100 thank you for the wise words. You are probably right. But it’s so difficult to continue going around not knowing what is going on and what my future looks like? My dad has been effected by MS so much and unfortunately at the age of 62 he is bedbound. I’m 32 and I don’t see much of a future anymore with an MS diagnosis. I’m just so worried. My relationship with my partner is deteriorating and I feel I’m losing everything around me. I am sorry for the negative and down chat. I’m just really struggling. Thank you so much for replaying and taking the time to be so thoughtful. Thank you.
My neurologist told me that it is extremely rare for a MRI not to show lesions. I had a brain mri and c spine mri 4 years ago and it was normal. And now this year normal. You must have been an extremely rare case and wow you must have very strong willpower to carry on through with your life. It’s people like you with as strong will and determination should get more praise. I’m just not sure what to do anymore, I feel very lost. I have a follow up appt on the 6th of October with the neurologist, I am going to type everything out and send it to him prior to my appt. Many thanks 
Hi again. My diagnosis is Rare Spinal PPMS. I only have 2 lesions ie one is cervical and the other is thoracic.
Just 2 small lesions, yet they have taken my feet, legs, bladder, bowel and much reduced my use of my left hand and arm.
Boudsx