Advice

[MaisiePollock]

Hello,I know my previous posts were accepted but they were kindly replied too individually by the people who run this form, I thank you. I was referred back to neurology however neurology have rejected my referral and advised my GP to refer me to neuropsychiatry. Please see below the letter sent with my referral by my GP. “Thank you very much for seeing this 30-year-old lady who was last seen by yourselves in 2020.At the time there were concerns regarding possible motor neurone disease because her grandmother had a form of MND.She had imaging and nerve conduction tests, and she was reassured and diagnosed with functional neurological symptoms.Of note, she was incidentally found to have chiari 1 malformation.Unfortunately, she has developed symptoms again that she believes are worsening.In particular, she feels her breathing is more laboured and her voice is changing.She also sometimes has concerns regarding asymmetrical strength in her legs.Her neuro exam is unremarkable and initial investigations including bloods/CXR/ECG have been normal.She continues to be on an SSRI and we have tried to reassure her during many GP visits lately, however she is very concerned deterioration in the lastd yea further assessment given the deterioration in the last 4yrs. Pls can I get your opinion on this? Please. Thank you for your time and patience.

 

[ShiftKicker]

Hi Maisie-

I am so sorry you're still struggling with your symptoms and with not believing your neurologist and the testing conducted that your symptoms are not ALS. This forum is one that exists to support those with a diagnosis of ALS/MND and the caregivers of people with ALS/MND. We can only provide basic information to those seeking answers about symptoms, but can not be used as a place to diagnose, nor can we provide anxiety support.

You have been recommended to see a neuropsychiatrist. This can be helpful. If you do not believe the conclusion drawn by your neurologist, then seeing a specialist in the field of neuropsychiatry is definitely your best next step. They are an expert in the field of neuropsychiatry and have years of specialist training. They will be able to either confirm the diagnosis of FND or eliminate it. Please consider this as your next step in receiving a diagnosis.

We simply can not help you here. You have been asked a few different times and in a few different ways to seek help with your anxiety about ALS. Your focus on ALS to the exclusion of all other possibilities means you are not going to get the help you need and is likely interfering with proper diagnosis. Chiari 1 malformation can explain much of what you report. Why not work with your doctors to figure out what is and is not associated with this condition, while also working with the neuropsychiatrist to tease out what issues may or may not be exacerbated by distress.

I am locking this thread. I will ask you to stop posting here. You have some answers, it is time to pursue this further with people qualified to help you.

Please take care