The Neurologist has not been honest

W_Webster

Hello, I am relatively new here and I am hoping - who-ever reads this - might let me know their thoughts, please?

Since a few years I have a lot of neurological symptoms that I cannot place with my other disabilities. So, I have asked for a referral to the neurologist last June (2023). Finally, I was asked to go an see him in late February 2024 and an MRI photo was made of my brain in March 2024. 

I had sent an e-mail to the neurological department to ask them to do a phone call appointment to discuss the results, because travelling to the hospital takes a lot of time and a lot out of me due to other mobility issues I have. I already asked for a copy of the MRI Photos and the report that came with it. And I had written down some of the questions I wanted to ask.

Today I received a letter from the neurologist with my results. He thinks I have FND (Functional Neurological Disorder), says that my brain looks clean and will send me a folder with some information about FND. He is basically done with me.

First of all, the radiologist did say that there were small lesions to be seen on the photos and some other damage (I have seen them myself!), so the neurologist is not truthful in his statement saying that nothing can be seen. Second, like in the past regarding my other disabilities, I am send in the world with a leaflet again with no follow-up appointments or any other real help.

In the past - and this happened every single time - they would send me away with very little too, saying it is all in my head. Only for me to have to stand up for my self for years to come to tell them they were wrong. In the end one specialist would finally do the RIGHT thing and do the RIGHT test on me to find out what is truly wrong with me. 14 years of battling meant finally the diagnosis "endometriosis" (doing its worst) and me eventually losing my womb and ovaries. 

So, you see, I am very alert what specialists are saying and doing these days.

Anyway, all I want is that the neurologist tells me the truth. If the neurologist thinks that the small lesions are not causing the symptoms and he is not sure what else does, and the physical examination indicates to FND, that is fine. But to blatantly lie about it, I do not like at all.

Please don't get me wrong: I am pretty sure that FND is one of the issue here, but I know there is more going on. It is just that by sending this letter, I did not get a chance to ask questions about the MRI photos at all. He really took that away from me.

So, before I rattle any cages and having to wait months and perhaps years again for any answers, what would you do, if you had a similar issue like me?

I should really write back and try and ask my questions by letter, and hopefully the neurologist responds on it.

Asking for a second opinion is also an idea, but that means another wait of 9 months or longer. And going private is financially not an option just now.

All I want is for someone (neurologist/specialist) to go over the MRI photos with me and explain what is going on there. 

What do you think?

egister

You should consult another neurologist

cerbralpalsy51

I don’t know how old you are,

I’m in my 50s I have white matter in my brain too,

According to my neurologist it’s normal aging of the brain,

You could try and contact the P.A.L.S team at your hospital, every hospital has them,

They help answer any questions you have about your care