MS or ADEM

New diagnosis and before diagnosis
1

Confused, Need some advice!

I have recently been for an MRI scan which has shown up pockets of swelling in my brain (mostly the left side), the neurologist is querying MS or ADEM. (Acute Disseminated Encephalomyelitis)

I have had symptoms of dizziness, fatigue, light-headedness, and feeling of just not being with it for over 4 months when I had the scan.

I have been offered a lumber puncture test to see if it is MS but advised by the doctor not to have it done because it makes insurance very expensive once diagnosed.

I have since looked up MS and some symptoms I have been experiencing over the past 2 years i.e. eye pain in right eye, dizziness, fatigue, light-headedness on occasions, hip pain right side, 2 years ago I went to doctor for dizziness was told it was vertigo which lasted about 4 weeks.

I am pretty sure that was MS as I felt the same as I did this time and I think the test is going to be positive.

I don’t know if to have the test done, I know you have to inform the DVLA, insurance etc.

Hope someone can advise me who has had similar experience.

Thanks Dawn

2

Hi Dawnie27

I’m sorry you’ve not had any replies so far, and that you have been having a challenging time.

I think it is a bit odd that a medical professional is advising you not to have a test to determine if it is MS because of insurance costs. Was this your GP or the neurologist that told you this?

A lumbar puncture does not provide a 100% cast iron diagnosis with regards to MS, but it can indicate if there is something else going on instead. I would have thought that a doctor would be more concerned about diagnosis and prescribing medication to manage your symptoms and the condition. There is a school of thought that the earlier you treat, the longer it is possible to hold the progression at bay, if it is MS.

Yes, there are implications for insurance/costs, this is true.

What do you want to happen? We are all diffferent, so I could only tell you what I wanted (diagnosis and treatment).

Good luck and take care -

MonkeyGirl

3

Hiya Monkeygirl

I have recently been back to the neurologist who is thinking more to ADEM. Been given another course of steroids starting to feel better though now!! He told me you need to have 2 occurences in 2 years for them to look into MS so been told to just see if it happens again. He did say that I had some small holes in my brain which relates to an old occurence of something ( thinking it was when I had vertigo but more than 2 years ago) very confusing as ADEM is usually a one off occurence. All in all just goin to see if anything happens again!!!

Thanks for reply.

Dawnie27