Suggestions for a person getting a diagnosis

New diagnosis and before diagnosis
1

Hi all,

First of all thank you in advance for reading me.

I am looking for recommendations since I moved to the UK a year ago and still don’t fully understand how NHS works.

A bit of context, I had my first MS symptoms almost 10 years ago as Neuritis Optica. At that point, the doctor told me it could be a one time thing or MS. I had a few MS sistoms, so from time to time, I went back to the specialist to get more test, but nothing got a conclusive result. Fast forward to 2021, after moving to UK I started to have problems with my night vision, so I get a referral to Moorfields eye hospital. After doing some test, I get a referral to a neurologist, who after asking a brain CT, confirms suspicions that MS is my diagnosis. The Neurologist ask for a spinal CT and a lumbar puncture and recommends all get done soon to get to a DMT. Now, i had both test done (i am still recovering from the LP that occurred last week Friday) but I don’t have an appointment with the neurologist until December. Do you have any suggestions/experiences to share on the following:
1- do I have to wait until December to get a diagnosis or should I expect a letter with the diagnosis after the Lumbar puncture results are available?
2- there is no clarity on how long long will take for the LP results to be available. Should I call the hospital where that did the procedure after 2 weeks to get the results? Or do you have any other suggestion?
3- I would like to see the results of my Spinal ct as well, but the hospital told me they send it to the Neurologist. Can I request a copy of the results?
4- any recommendations or suggestions you might have for me? My wife and I are running crazy trying to take advantage of the time until getting the diagnosis. Please, don’t get me wrong, I want to be respectful of the NHS times and I am very grateful for the quality of it, but I would prefer not to get further long term damage and start with the DMT.

Thank you
Regards
Fernando

2

Welcome to the forum, Fernando.

Whilst to someone from another country in Europe the NHS works very slowly by comparison, having your follow up appointment in December is, for the NHS, on the quick side. It is just a few weeks, so hang on in there. Your neurological progression appears to have been slow, up until now, so a few weeks is unlikely to make any real difference. Psychologically though the wait is always difficult!

Yes, you can request your records - there is a procedure that will be detailed on the hospital’s website. If it were me, given that it is just a few short weeks to your appointment, I’d not request the records before then. Better to have them properly explained by the consultant rather than jumping to possibly incorrect conclusions.

As you come from another country, and may perhaps move to another country, it does make sense to have a cd of your MRI scans and records, for easy reference for future consultations, and would do that after diagnosis once you are settled onto DMDs, to get your records in one comprehensive package.

3

Hi,
Thank you for your answer. Maybe I wasn’t clear enough (apologies for that), I don’t think the NHS is being slow, my question is related to the fact that there is no clarity on when I will get my LP results (my hope is to have them before the next appointment). In regards to the results of my test, I want to have them since my uncle is a neurologist in my hometown (not in Europe) and want to get his opinion, not really planning to move since I love this country.

Regards
Fernando