Seeking Advice about MS
I had my first mri back in 2012…symptoms, relapses, 75% of McDonald criteria was met… then next 2019 my symptoms are getting worse…a lot of new one’s, same old ones lasting longer and getting worse, each time a new symptom would appear! So the mri in 2019 100% of McDonald criteria met but yet the doctors say “it’s not ms” so here I am no further ahead & still fighting for help!
I don’t t know where to go or what to do next…I’m so frustrated and sad that I have been suffering with such devastating symptoms and pain since 2007ish!
Has anyone had same journey or advice to help me? I would love the help!
Thankyou for taking time to read about my troubles
I don't have any real advice but I want to say that I read your post. I could hear the frustration in your words. I hope you find the solution soon.
Hi , I'm so sorry to hear the journey you've had to date. I completely get the frustration of being so close to ticking off the boxes of the criteria, but just not yet getting there. Except in your case, it sounds like you got there 100% and still not diagnosed.
From looking into MS online I have seen others say it can take many years to get a diagnosis, but this is little comfort for those of us who have to go through all the symptoms without treatment (or diagnosis for better treatment avenues).
My experience has been that I satisfied dissemination in space on my first MRI (I have about 20 lesions) - so half of that criteria you mentioned. I had symptoms for 4 years prior to the neurologist doing an MRI (at my request) cos I knew my symptoms could not be in my head (though I'm sure many doctors I saw probably thought they were - I'm sure we've all experienced that in some way!). The second MRI, only 4 months later, said no changes to the lesions or no new ones. My doctor said I just need one more lesion for possible diagnosis, so I imagine I'll have to keep waiting for a diagnosis too. I am currently experiencing tremors, dysphagia, lower limb weakness. I was thinking of seeing an MS specialised Neurologist (i.e. a neurologist with MS sub-speciality training), so not sure if that helps you. Where I live there are not many Neurologists with the specific MS training so I'm trying to think of everything.
I havent been on the journey as long as you though, so I can only imagine how hard it has been for you.
I don't blame you one bit for feeling frustrated,
! Heck, I would be frustrated and boiling mad!
Have your doctors given you any indication what they think is going on in your body, if not MS? Are you receiving any treatment for your symptoms?
You have the right to take your MRI results and consult other specialists. Also, there are other tests that can help with diagnosing MS. The MRI is definitely an important test in the process, but it's not the only one. Many neurologists rely on a battery of tests to make a diagnosis (you can read about those tests here -- https://multiplesclerosis.net/diagnosis/tools-your-doctor-will-use-to-make-a-diagnosis).
I know it can be exhausting to have to keep advocating for yourself (especially when you're not feeling your best), but keep fighting for a diagnosis! No one knows your body as well as you do, so don't let your symptoms be brushed off by doctors.
I am sorry you are in this position. You shouldn't have to fight this hard for a proper diagnosis. But please know you're not alone in this and we're rooting for you from the sidelines as you keep working to get the diagnosis and treatment you deserve.
Best, Erin, MultipleSclerosis.net Team Member.
I'm so sorry for what an ordeal you had to go through, I can't really help you but I would like to express my condolences.
