Confused and scared
I am a 36/f who's been going through a Ms work up since September 2024 due to the fact that I had a car accident in July of 2023 due to my accident and having pain in my shoulder they ordered a mri that showed a lesion on my c2-c3 area and was 3mm bigs I was refered to a neurologist who then referred me to a ms expert who order another mri in novermeber 2024 and the results were still the same since then I had blood work done a nerve conduction and some other tests I had tingling feelings in my left hand and foot for a couple months but it's also been a couple of months since it's stopped now I'm just experiencing a shocking feeling in Random parts of my body from time to time mainly foot and hand but that has also slowed down a lot I just had another mri done 5/1/2025 and it showed that my lesion shrunk in size from 3mm to 1.5 and I other lesions I don't see my doctor til June 4th I guess my question is did anybody with ms ever going though this before being diagnosed like did lesions shrink without the use of medication is it possible that it could be something else that caused my lesion I'm sorry I know my message is all over the place I'm just still very nervous and I know the fact that it shrunk is a positive sign but I also don't want to get happy for nothing til I see my doctor thank you so much for your time and im sorry that my message is so long
so... I don't have MS. But I know how scary it is to go through all the testing once someone in the medical field says it could be. And MS was on the table for me from my early 20s until this year (now 40). The uncertainty, the not knowing is hard.
Ultimately, I landed on a diagnosis of functional neurological disorder, which is great for my mylenin sheaths but that's about it.
I just wanted to say... we're here for you. You're not alone. And don't be afraid to ask questions, request additional tests, and ultimately advocate for yourself. It's okay to question your doctor, it's okay to want more answers. And it's okay to be scared sometimes. 💜It took 4 years and 4 neurologist (I was 32 yrs of age) and my MS Dr still doesn't know what type I have. My father was diagnosed after me and he is definitely Secondary Relapsing Remitting. I have had only 1 real instance of relapse. The lesions in my brain haven't shown any change. On the other hand I have the majority of symptoms. I have been progressing the whole time I am now almost 58. I have been through the whole SSID. Hang in there, when you finally get in front of a judge, the real decision gets made.
My frustration is same as author. Feeling like dead weight in a society that over-values long work hours and corp productivity. I would love to volunteer but I cannot be depended on. One day I'll feel energized and able to cope with my pain and the next day, I can't move from my recliner and my brain fog is intense.
I have slowly learned(my husband helped tremendously) that my value as a person has nothing to do with the "norm" and only I can redefine what my new "success" looks like.
This is an ever evolving process as my disease progresses.
Everyday is a new opportunity to love myself and others. Whatever success looks like that day.
