I have had numerous neurological symptoms for several years. I’m 36 and in 2015 I lost my mother who had primary progressive MS and my aunt, her sister, also has MS.
My neurologist told me that he didn’t expect to find anything on an MRI scan but given my strong family history we should do one. He suspected I had ME/CFS. I had a series of blood tests that have come back as “unremarkable”.
Fast forward to my MRI results which revealed “a number of areas of signal change in the white matter of the nervous system”. Consequently I had another MRI with contrast where I was told the white spots were inactive and I would require another scan later this year.
My symptoms are relentless and I have no treatment or medication. I just feel like I’ve been left to it until my next scan (haven’t had an appointment date yet) and I’m so frustrated! Has anyone else experienced anything like this?
That sounds so frustrating. And I’m so sorry about the devastating effect MS has already had on your life.
I went through a similar kind of process of delays a few years ago, trying to get diagnosed. In retrospect, knowing what I know now, I’d have acted sooner to get things moving. In the end I did lose patience, paid to see an MS specialist neurologist privately, in a different area. That got things moving.
You may be able to get your treatment shifted to a different trust by going via your GP. As patients we are supposed to have a choice where we are treated.
If you do have MS, you may be eligible for treatment - there are more treatment options these days. And people think that the sooner we start high efficacy treatment, the better.
So it does matter that they get on with things and if they are faffing about, I’d shift hospital.
On the symptoms, you might speak to your GP in the meantime. It depends on what they are but sometimes you can get symptomatic treatment without a specific diagnosis.