So, the backstory on my diagnosis. I’m 34 and have struggled with significant clinical anxiety the past 10 years, largely caused by the anti anxiety medications I was on. I fell into an abuse pattern with benzodiazepines, (the withdrawal symptoms overlap considerably with MS symptoms.) After taking a significantly large dose and then having none, I had a seizure. The ER doctor determined it was likely due to medication, recommended I see a neurologist, and changed my life. (I’ve been off the benzos ever since and feel fantastic.)
The neurologist had me do an mri, which revealed lesions on my brain indicative of MS, but I have zero other symptoms. A spinal tap confirmed I have MS, and at my doctor’s recommendation, I’m starting Ocrevus. I still don’t have any real symptoms— the fatigue, depression, brain fog, and trouble sleeping have completely disappeared since stopping the benzodiazepines. I have had horrible vision my entire life, and I occasionally get pins and needles, but otherwise, I feel amazing.
All things considered, I feel... confused more than anything. Having this disease hasn’t impacted my life, but I feel like I should be doing more or more scared or something. I rationally understand my diagnosis, but I don’t have an emotional reaction and I’m worried about that. When symptoms start, are they sudden, like you wake up one day with pain or blurry vision or weakness, or is it much more gradual? Weirdly, I’m also worried about how this might effect my retirement? Should I be saving more in anticipation of treatment needed after I retire?
I just feel a little lost and behind the curve on what I should be doing or feeling. Everyone seems to be relieved to finally have a diagnosis, but I haven’t experienced that struggle and I’m afraid that I’ll, I don’t know, not take this seriously or forget or miss something I would have otherwise focused on.
This is Steve with the National MS Society.
I'm glad you found this site. I wanted to pass along the following links which I hope you find helpful. The first will take you to the section of our website for someone with a new diagnosis. It provides a lot of education and information about living with MS. The second link will take you to a publication which discusses financial planning for someone with MS.
Please do not hesitate to contact us again at this site, or by calling 1-800-344-4867 (M-F 9am-7pm ET). Take care,
I was diagnosed 4 years ago and I immediately started on Tecfidera. I too have no significant symptoms and have not had a relapse since the original one that lead to a diagnosis. I have had some very mild tingling on a rare occasion, but nothing else. The only way my life has changed is that I take medicine 2x/day, get bloodwork and MRIs every 6 months, see a neurologist every 6 months and a specialist once a year. Being stable for a long time, it is easy to go into denial and almost "forget" you have a life-long illness. I don't feel any different either, but I am thankful for that. I did get a small tattoo to remind me that yes, I have MS and yes, it is foever. It reminds me to take my meds, follow the treatment plan and consider myself lucky to be where I am. I have been banking my sick days just in case and I have contributed more to my retirement just in case.
There is no "right way" to feel or react. You may be in shock or you may just be relieved since you feel better than you have in a long time. It took me about 8 months to calm down and not obssess about "what if". If and when you do experience symptoms, call your doctor and you can deal with them as they come. Maybe you will be one of the lucky ones that never has significant symptoms or disability. MS is different for each person and it is completely unpredictible. Do some research, stay informed and up to date with treatment options, get a good doctor and as my doctors told me, "go and live your life".