I want to help if I can: I have be dx in... - My MSAA Community

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I want to help if I can

BlondiePink profile image
30 Replies

I have be dx in1986 w/ RRMS, I had be misdiagnosed approximately 5 times, one of the Dr.s telling me to quit my job in a jail because I was a woman.

Long story short I went completely paralyzed and in a rehab for approximately 6 weeks. I learned to walk, talk, adl, etc until my

release when I went to outpatient Pt, and finally back to work on light duty.

Zoom to 2023, I have a loving genius of a Neurologist for 32 yrs. I am on Tysabri going on 13 years and am doing very well physically right now. I have some Cognitive Quirks. But am lucky that all I have no problem with physical mobility.

I retired from 13 years on my job quite awhile ago, and had to fight for my SSDI, but finally got it.

I am here to offer support for any questions you may have.

Please be wonderful and happy!

Marci

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BlondiePink profile image
BlondiePink
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30 Replies
carolek572 profile image
carolek572CommunityAmbassador

Welcome to this forum, BlondiePink . You have a lot of life experience and you are willing to share this with others. That’s wonderful because we all have shared and unique experiences. We can all benefit from these and this forum is a great place for that. I look forward to hearing more from you. You can go to mymsaa.org for everything ‘ms’ related. Keep Smiling! :-D

BlondiePink profile image
BlondiePink in reply tocarolek572

Thanks for your warm welcome!

Peruzzot profile image
Peruzzot

Welcome to the group.

bxrmom profile image
bxrmom

Welcome to group BlondiePink , sorry for the reason. Look forward to getting to know you.

BlondiePink profile image
BlondiePink in reply tobxrmom

Good morning and thanks for your welcome!

I hope you have a wonderful day!

Marci

falalalala profile image
falalalala

Welcome 😀

BlondiePink profile image
BlondiePink in reply tofalalalala

Thanks for your welcome. I have been dx since 1986. Would love to be able to help any way I can!

Have a wonderful day!

falalalala profile image
falalalala in reply toBlondiePink

Thanks, you too!

kdali profile image
kdali

Welcome!

BlondiePink profile image
BlondiePink in reply tokdali

Thank you!

You have a great day please😀

kdali profile image
kdali in reply toBlondiePink

Will do! 🥰 I hope you have a lovely day also 🎉

GratefulNeeC profile image
GratefulNeeC

Welcome Marcilew, glad you're doing better and the victory with your SS benefits. We are here for you as well! A community of kindness and support. Peace and Blessings. NeeC

BlondiePink profile image
BlondiePink in reply toGratefulNeeC

Hi, thanks so much! I have gotten so many warm Welcome’s , it’s a beautiful place . Have an awesome week!

Marcy

GratefulNeeC profile image
GratefulNeeC in reply toBlondiePink

Thank you, you too 😊

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Hi BlondiePink Welcome to the family! We are all here to help eachother get through MS together! The good the bad the happy and the sad! Take a look around and jump in anywhere! (Using your email isnt recommended) 🤗💕🌠

BlondiePink profile image
BlondiePink in reply toJesmcd2

Hi,

Thanks so much! This seems to be a very warm place and I have been jumping around all over for a few nights now. I really like it here. Everyone is very welcoming and kind.

Have a special day!

Marci🤗😍

Tazmanian profile image
Tazmanian

Welcome

BlondiePink profile image
BlondiePink in reply toTazmanian

😊 thank you

Frances_B profile image
Frances_B

I hope you find being part of this forum worthwhile. However, a word of warning - places like this one have lots of nice people on them, but they are also are just another trawling ground for various scammers and other not-so-nice people so if you can edit your post to remove your e-mail address it would be a very wise move to do so. E-mail addresses can be hacked and hijacked and used for devious purposes so it's a really bad idea to share your personal e-mail address with thousands of people you don't know - and while many people join a forum like this and rarely visit it, you have disclosed your private e-mail address to more than 8,500 people you don't know.

If people on the forum want to contact you they can always do so through the private messages function which is part of this website's software program, and you can interact with other members that way as well. Sorry to sound like an old stick-in-the-mud-party-pooper, but in these days of hackers and scammers you have to be super careful about giving out any private information.

BlondiePink profile image
BlondiePink in reply toFrances_B

Thank you very much. Please tell me where it is showing up, and where to change it.

Thanks!

Frances_B profile image
Frances_B in reply toBlondiePink

In the second last line of your post you wrote "Do not hesitate to email me at ......@xyz.com."

There will be a "button" under the post which says "More" and has little down arrow next to it - if you click the arrow it should give you the option to "Edit" your post. When you click on "Edit" you will be able to amend your post. When you have made the changes you want use the blue button down in the right hand corner which says "Post", and when you click on this the post will be saved with your changes made.

Screen shot showing where buttons are on screen.
BlondiePink profile image
BlondiePink in reply toFrances_B

Thanks so much! Done thanks to you!💕

Greentime profile image
Greentime

Hi! I was diagnosed a long time ago as well...1985. But I did not go through anything as rough as you did. Wow! Glad you have a "genius" neurologist!

BlondiePink profile image
BlondiePink in reply toGreentime

Hi!

Wow, our dx year is close. I had just made it off of probation for my job and my insurance just kicked in, thank goodness!

How are you doing?

Greentime profile image
Greentime in reply toBlondiePink

I worked for another 18 years, retired, then worked another 7 with my husband. 😳 I have annoying symptoms, fatigue issues, some cognitive issues. Still strength training, walking and gardening. I am very fortunate. Glad you are doing well too!

BlondiePink profile image
BlondiePink in reply toGreentime

Wow! You sound so well!

I am walking unassisted, but can’t run. I go for Balance Therapy weekly and love my PT as well. I’m so lucky to have a great care team!

I definitely have cognitive issues, especially my memory. But Neuro swears that it’s stress and not MS. I’m having multiple issues with my elderly parents and am having a hard time dealing with it!

Wishing you a wonderful weekend!

Greentime profile image
Greentime in reply toBlondiePink

You too! BTW, I can't run either. My legs would get super heavy very quickly. Stress definitely affects my brain in crazy ways. I have had some really, in hindsight, hilarious things happen when my brain "locks up". Best of luck with your parent's situation. It can be so darn hard.

BlondiePink profile image
BlondiePink in reply toGreentime

Thanks so much 💕

Gstrait profile image
Gstrait

Welcome Have A Great Weekend

Angler_Eric profile image
Angler_Eric

Welcome!

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