@admarr89 

Last reply

admarr89

Mixed emotions

I feel so lost in emotions! I feel like I should be more scared, but I am more relieved to have finally gotten a different type of flare than what I've had in the past(brainstem lesion-affected left side of face, vision and cognitive problems). Last month I lost feeling in my legs, numbness, weakness, heaviness etc... MRIs found a new lesion in my spine and that is what finally led to diagnosis. I feel relieved to finally be able to be diagnosed,as it's been a really rough year full of all kinds of appts and tests, but i feel like i should be more scared or upset about it... I honestly don't know what I should be feeling!
Ponca City, United States
@Cpdec21

It’s a lot to take in no matter what or where they find it. At least no the stress is off of you and you can start to find out what’s best to treat it.

1
@SuzanneTexas

It is a relief to finally get a diagnosis! I had mine in 1977. They didn't know much, I had gone to an appointment in Chicago & there were about 8 or so Drs there to hear my story & take notes, give opinions, etc. I was alone & felt kind of ganged up on. I thought I was seeing a Dr not a group. Anyway, I never heard from any of them. I also quit having double vision after awhile so I just did nothing. It's hard to know what's an exaserbation after you've been in a car accident (16 years later). Drs I saw were more interested in determining what symptoms were MS & what were from the accident. I didn't care. I wanted them to treat my problems. After a few years of blowing in the wind & me not doing anything o further treatment I just had too many problems & found the est neurologist ever. Barbara Jahnke in Saginaw MI. I saw her until that sweet woman passed from cancer. Then I quit seeing anyone. Had a horrible accident that landed me in a nursing home for the rest of my life. I lost everything. No home, no possessions & after my husband had a hemorrhagic stroke, no husband. Now no one cares about MS at all. I tried the first 3 therapies available & all made me worse so I used nothing. Never tried any new ones. So here I sit bed bound with MS, fibromyalgia, peripheral neuropathy, failed surgery syndrome which left me unable to stand or walk, they think but don't care. I had a knee replacement in 200?, can't remember, but that gave me lymphedema which has taken over my body. So it's just a joy to be me. You on the other hand have SO many advantages. Science has come a long way since my diagnosis. Drs kno so much more & are more than willing to treat new patients. It is still kind of a guessing game as far as which meds to put patients on, much like any issues. But help is available. Do research. You are your own best advocate, never forget that. Keep log of your symptoms. Get a daily planner & use it religiously. It will help you & your Drs so much. Take it with you to your appointments. Don't be afraid to ask all the questions you need answers for. If you aren't comfortable with a Dr find one who gets what you are all about. It's more important that you feel safe, heard & understood than just the fact you are seeing someone. MS is a confusing & sometimes life altering thing. Accept it, learn al you can, find a Dr you trust & always try your hardest to not let MS define you. Don't lose yourself. It's just something you have, not something you are. Think of it like an annoying little brother or sister. You can't kill it but you certainly can work through it. Be positive. Keep smiling, it really helps to be upbeat. Honestly, don't let MS define you, be strong. You may not have any symptoms at all but if you even think you might have some, write them in your daily planner. It's so important to be open & honest with your medical providers. Their goal should be to not just treat you but to educate you also. Best of luck to you & feel free to contact me any time, I'm available 24/7. Suzanne ✌🏼🌍