The letter itself

[Buckley123]

Thanks for all the support

[KayHimm]

I did not read at all that the neurologist has concluded that your symptoms are due to anxiety. He is saying you are understandingly concerned about your neurological symptoms. It sounds to me as if he is planning a repeat MRI that he hopes will be unchanged. The cause of the abnormalities on MRI seem undetermined. Following the MRI is what my neurologist does too. Not sure that will be comforting to you. But apparently that is the best way to see what is happening with the brain. Maybe others have a different take.

[Buckley123 in reply to KayHimm]

Thanks I guess I’m just seeing things negatively

Maybe I am

I’m just struggling to see any positive atm.

I feel the letter again gave no explanation which I guess is good but these symptoms are driving me mad 😠

I also see the doctors get things wrong all the time with my mum I don’t trust any of them

My neurologist seems to be disinterested in me in our appointments barely looks at me or gives me any reason for my symptoms or ways of managing.

I feel he is right a lot can be anxiety but only the anxiety they have given me with incorrect diagnosis and then telling me that ms dose not kill you ( lie ) and that it was lupus and he would have me on treatment by Christmas . Nothing. I feel it is all taking over my life too much of I’m honest x

[KayHimm in reply to Buckley123]

Hard to be positive with all you have been through. Your situation is one of those big challenges for a neurologist. Apparently, these MRIs can look the same. They are testing you for the things that may be causing your symptoms and abnormal MRI but your tests are thus far negative. You have to be very frustrated by now. Without a firm diagnosis, they may be hesitating to treat you. The treatment can be very different for what they are considering. Any doctor who does not have compassion for what you are going through needs a new profession. Maybe others will have better advice for you. Seems the neurologist is still searching for answers. If you do not feel you can go to another specialist at this time, I do not think you should worry about this doctor giving up.

[Buckley123 in reply to KayHimm]

Thanks 🙏 I appreciate your reply I just feel like my whole world has been turned upside down. My main worry is my children seeing me suffer as I did my mum all my life hence the desperation to get a quick diagnoses damage limitation🤦🏼‍♀️ I sound mad don’t I

Thanks again I do feel better for someone to talk to x

[Lisalou19 in reply to Buckley123]

You most definitely don’t sound mad!!!! I can relate to the children worrying. Unfortunately you need to get back on the rollercoaster and find someone willing to listen . I know it knocks you back each time your not heard but you have to stay true to yourself and continue to battle x

[Cherub198889]

Hello Buckley. This letter is very similar to the one I received in 1992. So, I don't want to give you false hope, or spread untruths, I just want to tell you my story.

I went blind in my left eye and was diagnosed with optic neuritis. I saw a neurologist and a neuro-ophthalmologist and was diagnosed with benign MS. As time went on, I lived my life, got married, had children and only had 2 more MS episodes. So, a total of 3 MS episodes spanning from 1992 to 2019.

Anyways, 27 years later, I discovered that benign MS in no longer a diagnosis....but it was a legit diagnosis in 1992 and I am grateful that my life followed the "benign MS" path.

I guess what I'm trying to say is that some people have a less devastating form of the disease. Maybe you too will be as lucky as me?

As for the "white matter" abnormalities...please get a 2nd opinion. I had a brain scan in February because I had a fall at work. I tripped over a box, so nothing to do with MS.

My scan stated,

....." periventricular white matter low attenuation it's most consistent with chronic small vessel ischemia. " ..... In other words, my white matter showed that I had an stroke sometime in my past and I was prone to future strokes. This scary diagnose allowed me to jump the queue and I saw a neurologist within a week. To make a long story short, the doctor who diagnosed my stroke and my white matter disease, jumped to conclusions. The abnormalities that she saw is what 50% of the population have. No stroke, no abnormalities, just extra fluid surrounding blood vessels.

I do believe in doctors, but doctors are human too....so get a second opinion on your "abnormal white matter".

All the best to you

Sue

PS please feel free to PM me.