Primary Progressive MS

By redfeatherwoman

Last Updated:

1 min read

I was diagnosed in 1990 with PPMS but had to go on long term disability a year and a half after my diagnosis. I have extreme pain and no energy.

Today I joined this site in hope of helping others with their issues. Also today I am in bed because I have no energy, which I regret because it is 68 degrees outside and I would love to be able to go out. Thank you for this opportunity to express myself.

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Donna Steigleder Moderator

<inline-mention user-id="3950860" username="redfeatherwoman"/> Welcome, We're glad you have joined our community and look forward to hearing more from you. Let us know how we can be of help if you need information in the future.
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Wow! This is my story also. I was diagnosed with PP in 1991, and the rest of the story is exactly the same. Love to be outside when it is cool, too. We hit 85 this week....never go out during this time! I, too, am in bed today with no energy. I do understand!!
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That username is wrong....mine is teddybear.
teddybear65 Member

Let's try this again....can totally relate with you. Your story sounds just like mine! Normally, I only see people with RR posting; so, nice to see someone who understands my situation and I, theirs!
1. Shelby Comito Community Admin
 
 We're so glad you took the time the share your thoughts, <inline-mention user-id="4093864" username="teddybear65" class="bp-suggestions-mention"/> . We hope this community will always be a place where you can find connection, comfort, and support! Also, love the username 😀 - Shelby, <a href='https://multiplesclerosis.net' target='_blank'>MultipleSclerosis.net</a> Team Member
michclaud Member

I was diagnosed in 2013 at the age of 60. I had a problem with my right eye and went to my ophthalmologist who sent me for a MRI, one for eye and one for brain. He called me to come in and talk to him and gave me the results of the MRI and told me that it showed I has MS. I was not upset about it because it actually gave me an answer to other problems I had.
michclaud Member

Sorry about that, I didn’t mean to post because I wasn’t done. He told me that I would have to get a PCP & a neurologist! I hadn’t been to any doctor other than my eye doctor in 37 years since my daughter was born. Hated them and didn’t trust them was finally diagnosed with PPMS. Now I can post. That’s why I was even commenting to you, Redfeatherwoman.
scottw Member

Hi! I’m non diagnosed (awaiting mri) and I’m just wondering what your symptoms were like when you first started to realize something wasn’t right?