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@melmel1 

Last reply

melmel1

Anyone in same boat?

So I was diagnosed with MS in 2018 by a general neurologist after all the tests and on and off symptoms for years, I have 5 lesions on brain 1 on the spine, since then been with a MS specialist who did not want to put me on disease modifying drugs as he wanted to watch me further he believes it's MS but can't say yes officially as I am not hitting the criteria for meds, I Had a full MRI last year no change in scans, had one in May of this year and spoke to the secretary today and she says my results show no change again, this was a head MRI no spine, so I dare say when I see the Neuro in a few months he'll say wait and see again, I'm guessing. I have had new symptoms from March of this year terrible pain and throbbing in side of my head not like my normal headaches, have been put on Amitriptyline one a day at night, was on it for a month, came off it for 2 weeks then the pain came back, now back on it, very helpful with the pain, my question is has anyone else been through this?, am I at the beginning of MS?or is there a chance this might not be MS. Thank u X
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@ItsMewithMS
@ItsMewithMS
 

From what I keep reading it takes an average of like 4 years for most people to be diagnosed with MS. It didn't seem to take that long for me once I had an MRI but my initial symptoms were dismissed as a pinched nerve from a kick-boxing class and it was a couple of years before I had a new attack. In the US we don't really have to hit the same criteria that I hear mentioned by people in the UK. As soon as I had an MRI with as many lesions as I had and could think of many symptoms I had had in the recent years I was put on a DMT before there was further progression. I can understand not starting if they are confident it is a CIS but once you have some history and MRIs with lesions on the brain or spine I would think that would be enough. I was also tested for NMO when I had spinal lesions as the DMTs are not effective for that. I thought the Dr Boster video for diagnosis was a good one- https://www.youtube.com/watch?v=0csvVXatlFo&t=13s Good luck- being diagnosed is often a frustrating and long process of ruling out everything else and MRIs and exams...

@melmel1
@melmel1
 

@itsmewithms Thank you so much for the reply, it is frustrating, I kinda feel in limbo but understand my neuro wants to be sure, I was going to change neuros before but I was advised he's one of the best MS specialists going, lol I guess it's more waiting for me. I asked him about NMO he was like definitely not, I've had every test goin 3 MRIs eye evoked test, lumbar puncture and all the others in between to rule out other conditions, I see the Neuro is sept what advice would you give like questions to ask him?I know he's going to say wait and see again, thank you I watched the YouTube it's very helpful, hope your doing ok how is your MS. X