So frustrated and angry

Good grief! I’ve come back here because I can’t talk to anyone in real life at the moment…

Bit of background. Mild neurological problems for a year. About six weeks ago, I saw a neurologist who recommended referral to ophthalmologist and spinal MRI as I’d already had two of my brain which had come back normal.

Three weeks ago, having not yet had the spinal MRI, nor seen the eye doctor, I was admitted to the neurology department of a teaching hospital with new symptoms (myoclonus and abnormal overstimulated reflexes).

I was in for a week. I had to wait for an MRI, so we missed a week’s holiday we had booked. They did CT, MRI, EEG and lots of cognitive tests. I was discharged at the end with a fairly curt letter stating they had no suspicion of central nervous system disease. They expected I would get better (no idea why, as they had no diagnosis) and they would see me in three months.

Since discharge, I have had a couple of new things appear. Most significant, focal seizures.

We called neurology to find out what we should do. They said I’d been discharged, so they couldn’t help. I had to go to an out of hours clinic visit (phoned neurology, told there was no point in me coming back) a visit to my lovely GP (phoned neurology, told there was no point in me coming back) who referred me in to the medicine department in the same teaching hospital.

Internal medicine doctor examined me thoroughly, said she didn’t understand why I was there and not in neurology. Showed her the letter that said «We don’t suspect a central nervous problem». She went away and must have spoken to someone. A really nice neurologist came down and discussed everything with me. Thorough examination, on which he noticed some things the other doctor missed. He worked me out a new plan (fortunately going back 1st November now, instead of three months time). I am to be referred for physio. The recommendation from the very first neurologist I saw (about three weeks before I was admitted) that I should go to see an ophthalmologist was chased up (accidentally booked for 2018). He reassured me that the focal seizures I am having every night are probably not dangerous. So I was quite happy with all that.

Woke up this morning and remembered something that has been niggling throughout, but I kept forgetting to check (confusion is one of my symptoms). The very first neurologist saw that I’d already had two brain MRIs. He was going to refer me for MRI of my whole spine.

They’ve only taken MRI of my brain and medulla. The doctor in charge of my case when I was in hospital for a whole week has not taken an MRI of my spine. So after all that time, after fobbing me off and messing me about, after making me miss my holiday while I waited for MRI haven’t even actually bothered to check properly for MS.

And yes. I know it might still not be MS, but I’ve been having spinal problems for years. I couldn’t understand why they kept saying «No abnormalities on the MRI» but I kept forgetting to double check.

I am so angry and have nobody I can talk to right now.

contact PALS (Patient Advice and Liaison Service) at your hospital.

Thanks Carol.