Still searching for a diagnosis...
I started this journey in 2010 in my early 20s, when I noticed that I was having involuntary hand movements and numbness/tingling. Didn't take the visual disturbances as a symptom until the first neurologist asked about it. I had an MRI without contrast in 2010, nothing abnormal to note but no follow up with contrast. The doctor said he suspected early stage MS but without any evidence on my tests his recommendation was to follow up if I noticed any new or worsening symptoms. How vague.
Fast forward to December 2023. Suddenly hit with this feeling in my legs, like I was on a rocking boat or trying to walk down the aisle on a plane in turbulence. And it didn't go away. Since then, more and more symptoms are emerging, and looking back I recognize so many signs that I missed.
Now I'm waiting for my MRI, of course they are so booked that the first available appointment was three months out, and I have one month to go. It's frustrating. And I really want someone that I can talk to. I don't want to burden the people in my life without having an answer, and I feel lost at sea. My current neurologist said he suspects migraine disorder, without me experiencing migraine, headaches, auras, or any of the other classic symptoms other than visual issues.
I feel like I'm just venting at this point, but it's so important to have a safe place to share and speak freely about our experiences.
Hopefully the MRI next month will help give some definitive information. All I can do is keep recording my experiences and stay positive.
Well you are certainly in the right place so vent away! We totally understand the many emotions you're experiencing right now. The process of getting a diagnosis can be frustrating to say the least and become tiresome. But you are doing everything you can to get you one step closer and that's what's most important. Continue to journal your symptoms and experiences and keep your head up. Staying positive will carry you through this journey. Soon you will have the answers to get you on the right path to relief. Control the controllable and allow everything else to be. We will figure this out together. Your in my thoughts, Latoya (Team Member) thank you for your kind words. Ever since my last bought of symptoms, which have been a real doozy and very persistent, I've realized that I need to give myself grace. That I need to forgive myself when I miss my goal or fall short with my tasks or the people I care about. That's honestly the hardest part. Trying to grant myself the permission to slow down, or postpone a responsibility.
I started listing my symptoms at the beginning of my journal, and have filled two pages and started a third. And I read what other people are going through and all I want to do is try to give back to the world at large. Try to create some kind of beauty or compassion in the uncertainty of what is to come.
30 days to go before my MRI, and then hopefully my doctor will see what I see and I won't have to fight to advocate for myself. I appreciate that I can be a part of this community despite my lack of answers. I appreciate everyone here, and have spent the whole weekend reading through the various posts and comments. Much love to all!I can totally relate to your experience and the frustration in trying to get diagnosis/treatment. I am almost 60 and have been dealing with MS type symptoms for most of my life. I’ve spent many years casing symptoms by going to specialists to treat whatever part of my body was being impacted, ie, eyes, ears, mouth, neuro symptoms, etc . My MRI showed no lesions so I was sent to a rheumatologist, I have a positive ANA but don’t quite have lupus. After a very bad episode of trigeminal neuralgia, the rheumatologist gave me gabapentin and wants me to go back to the neurologist. I’ve gone along with being treated with Placquenil as if I have Lupus, I’m still not sure I’m in the right place. It’s disheartening how difficult it is to find a provider that will truly listen and help. I think about undergoing a spinal tap to gain more info. I hope you are able to get resolution with your MRI and that provides a direction for your treatment. Take care. I am getting in my own head something awful right now. I have 18 days to my MRI and keep imagining the various scenarios that could occur. From actually getting a diagnosis to being written off. It's wracking me with anxiety (which of course makes my symptoms even worse!) and I'm losing sleep over it all. I burst into tears today for no reason at all, I wasn't even sad until I was. So I'm trying to find the silver lining, something to take away. And I come to this: my life has touched so many people, I have had amazing experiences and known wonderful people, and I have found a partner that knows and understands me and truly loves me, even if I am broken. I will take all of my blessings and lean on them to get me through what I am feeling right now. Much love to you all!
