The neuro originally thought I might have epilepsy but after doing a tilt test it’s proven I don’t have it. Then the neuro thought possibly it was peripheral neuropathy but it wasn’t.
Hasn’t mentioned anything about ms, although I do have quite a lot of the symptoms. My balance is really bad, that I’ve fallen so many times and now need knee surgery.
All my tests are always normal, no matter how many symptoms I experience, my results show nothing. It’s really frustrating, I’ve been getting different symptoms since Jan. I had blood tests everyday for months, had my heart checked, had a brain mri, had a spine mri. Nerve conductive tests, had the electrodes on my brain, tilt test.
I saw the neuro and shes basically thinking it’s mental health, I feel like I’m being brushed off as a hypochondriac. I do genuinely have symptoms and would rather not be in this position.
The cardio thinks something wrong with my heart but nothing is ever found, I don’t think it’s my heart but what do I know. I’m trying not to fixate on MS or other neuro conditions but it’s so hard.
Sorry for the long possibly rambling post, I’m just frustrated
You have to remember that MS shares it’s symptoms with many other diagnoses. So it isn’t epilepsy, peripheral neuropathy or MS. Or in fact your heart. So what is it? This is where you’ve been left. There are definitely physical symptoms, but you’re being left feeling like it’s ‘in your head’, or hypochondria.
Has the neurologist suggested something called Functional Neurological Disorder? Have a look at What Is FND - FND Hope International There is a psychological element to the diagnosis, but that doesn’t mean there aren’t real symptoms. I’m not suggesting for a minute that you have FND, just that it’s a possibility.
What you are experiencing is just as real as someone with an MS diagnosis. And you still need help to get it sorted.
Perhaps you should see your GP again, talk through what has happened to you and what the neurologist has said.
I’m waiting to hear from the cardio to see what they say. I haven’t been completely dismissed from the neuro, she does seem to think it’s more to do with mental health. Neuro said it’s unlikely to be epilepsy, I guess that’s not a definitive no yet. She did order my a cervical spine mri so there’s a chance something shows up. Maybe fnd is a possiblity, because that doesn’t show up in scans. I’m not seeing the neuro for another 4 months so it’ll be quite a while before I can get any diagnosis. The neuro did say if I got worse I can call to try get a sooner appointment that’s slightly reassuring. It’s still stressful not knowing, I’m stuck in limbo. My GPS just never have any appointments available it’s really frustrating. But thank you sue