in limbo

Hi all. Sorry if I double posted, I can’t find my first post.

so about me. I’m Sandra and I am 29. I was recently diagnosed with optic neuritis. So its pretty standard to get tested for ms. I knew that MS can cause ON, but I figured let them do the tests. My brain MRI scan came back with no abnormalities and before I was discharged from hospital after doing a stint of steroids for the ON the nurse said my spinal (which was done on the day of my discharge) came back with nothing untoward. I’m guessing I’d have been kept in to discuss it further if it showed lesions. But my GP read a letter from the omphmaology department saying I have bilateral pappilodema
that’s caused the optic swelling. But that they are working towards a diagnosis of MS. No one has said this to me. So I have confusion too.

ive got myself worked up with worry as I’m alone with 3 kids (one being autistic) and I don’t have much in way of emotional support as my parents are relocating and I’m going through a divorce. I am in a pretty miserable so was hoping for some friendly support and a virtual hug x

Hi Sandra I am sending you my best virtual hug here xxxxxx. It is a very stressful time for you with all that is happening in your life and I can see how lonely you are feeling and you really have your hands full with your kids let alone helping them cope with the changes.

It is very likely that the opthalmology department and the neurology department haven’t shared their findings and the letter is only showing what the eye lot thought and not what you findings from your scans were. I know it is hard to deal with the not knowing what is going on and in some cases it feels that you are the only one left out of the loop even though you are the patient. It is the letter from the neurology department the will have the most information in, by the way do you have a follow up appointment with the neurologist because he will discuss your tests then.

I know this is easy to say and almost impossible to do but try not to stress, if you haven’t got a follow up get your GP to chase that up you need to talk the findings through with a doctor, but at least you can hold onto the fact that the scans were clear.

I hope someone else will post too. Sue

thanks for the reply. When I was discharged I was told that the letter to see the neurologist would be sent in due course. I’m taking some comfort that the MRI scans came back ok. I just wish I knew what was going on x

Hi Sandra, hugs from me too. I pretty much think the same as Sue, it’s sounds like one department hasn’t caught up with the other. Sometimes test results are clear even when MS has been mentioned, maybe another visit to your GP might help? If you’re already waiting for an appointment to see a neuro, he/she would probably need you to have some more tests & when they have all the results, would possibly be able to give you a diagnosis…sorry to say that this could take a long time & you’ll need to be patient.

Good luck with everything, try to be positive x

Rosina x

Hello Sandra,

So sorry to hear that you are going through this on your own, but now you’re here you are not alone, we are all here for you. I feel you should see your GP and get him to get all the relevant information from all concerned, ask him if he has received letters from Opthamology and your neuro as they should write to him/her regarding their findings. I’m sending you (((((HUGS))))) Good luck and remember we are here for you.