Last reply 1 year ago
Trying to live with the new me….

I have been diagnosed with primary progressive MS. I was diagnosed September 2015. I did not know I had MS until after a stroke July, 4, 2015 also. No one in my family has it. The stroke and most of my MS lesions were on the right side. I’ve always had seizures and migraines since age 11. I had that checked and have a left frontal DVM. Hoping it will not turn into an AVM. The lesions and strike damage to the brain ruined my marriage. My behavior has became almost child like and I suffered from agoraphobia even before my diagnosis. It’s a million times worse now. I have yet to start any treatment for my MS. Literally my nero handed me 4 or 5 pamphlets /folders/books about mecstmm. Every singl medication they offered
I am sure I would be the 1% it did something really bad to. Speaking of side effects….. I get them all! So what did I do??? I ran to the beach. Tried to forget everything that had just happened to me. It’s been 3 years now. ( the running) I just now after having 4 to 5 seizures a week decided to get myself some help! Primary Care Doctor check! Pain Managmemt Check! Neurologist still waiting on the referral ! Should be any day now. That’s my story in a very small nutshell!

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1 year ago

Hi, everyone. I think I am navigating this right!

1 year ago


Hope you do not mind a bunch of questions since your profile is blank… Children? Age? Where on Planet Earth are you?

I am the only member of everyone in my family throughout generations with any auto-immune disease. I am fortunate that Primary Progressive MS held off until I was almost 60; so I got to travel around the world & played my sports for 50 years…

I too was just told here are some pamphlets – read them & I will see you in a few months. But the medical field has never treated me well so that did not bother me… Out of curiosity, is there anything specific we cam help you with?


1 year ago

Hi @gypsynirirvana and welcome.

Sometimes the medical professionals just don’t give us enough of their time. Handing you a selection of brochures doesn’t really cut it.

I too started with migraines, which transitioned to MS in my late 20’s, although it took another 12 years to formally diagnose me.

The running doesn’t help, you do need to face up to what’s going on, then you can start managing the condition rather than the condition managing you.

Let us know how we can help………….

1 year ago

Thanks guys. I really do need some help! More simple than the MS part though. How do I list where I am from and all of tht? Thanks for the kind word. It’s nice to be amongst people who are going through the same thing as you.

1 year ago

@gypsynirirvana , you just need to update your profile. If you select the “Head and shoulders” icon (top right) and then select the Profile option. This will display your Profile Information, with an option to Edit the details. 😉

1 year ago

Thanks so much! 🌞

1 year ago

I to was diagnosed with PPMS at 44 yrs and no treatment only symptom management.
My primary issue is pain along with many other symptoms. Most of my lesions are all over my brain,had to finish up work in September because of it and than my driving licence went as well
I can still get around I use a stick for balance and family are great to me but I see the fear and worry in their eyes.
It is so easy to lose yourself in this disease but keep strong
Mary dev

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