Hi, how are you? : Where ya from? What... - My MSAA Community

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Hi, how are you?

Jesmcd2 profile image
40 Replies

Where ya from? What kind of MS do you have? How did you find out? Does it run in your family?

Would love to hear from y'all! ☺️


40 Replies
bxrmom profile image

From WI, RRMS in 2006. My vision suddenly went blurry one day (I was in the process of trying to buy a house at the time so I'm sure stress triggered it). Had to see an Ophthalmologist who couldn't find anything wrong and sent me for an MRI. Was referred to a Neuro who did testing and a few weeks later I was diagnosed. Does not run in my family as far as I know.

kdali profile image

GA, RRMS, an eye exam, and nope.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to kdali

Good job! 🤣😂🤣🤗💕🌠

hairbrain4 profile image

I am currently in AR but was born & raised in southern CA. I woke up with my face numb on the morning I had a doctor appt to have my hormones checked cuz I felt like I was losing my mind. I couldn't think straight, was depressed. The Dr sent me for an MRI. At the time he didn't know what was going on. For some reason, I was thinking that my neck was out causing the numbness but then later realized that facial nerves are cranial nerves, which I knew because I taught it at Beauty School. That's how bad my brain was. After the MRI he sent me to a neurologist that gave me the diagnosis of RRMS after a couple more tests, a spinal tap & EVP (Evoked Potential) test. I am the only one in my family that has ever been diagnosed with MS.

ahrogers profile image
ahrogers in reply to hairbrain4

I was born and raised in Orange County CA. What part of CA were you in? Now we live in SC. Dxd in 2014 with RRMS but suspect it is PPMS as symptoms never remitted and slowly get worse. Also have spinal cord lesions which is typical in PPMS. Ocrevus has slowed progression but still slowly getting worse. No one else in family has MS.

hairbrain4 profile image
hairbrain4 in reply to ahrogers

I was born in Santa Monica & grew up in Culver City & Long Beach. In my 20s I moved to Davis for a few years & then moved back to Long Beach till I could find a job & settled in Anaheim where I met my husband. I've since moved to TX, back to CA, back to TX & now in AR. It's crazy when I think about it. But we are here to stay.

Jer29-11 profile image
Jer29-11 in reply to hairbrain4

ahrogers I’m born and raised in Southern California too! We’re still here 😊

hairbrain4 profile image
hairbrain4 in reply to Jer29-11

I want to say I'm sorry you are still there only because I hated living there over 30 yrs ago. But now with all the homeless problems etc. I really don't want to be there. What city are from?

Jer29-11 profile image
Jer29-11 in reply to hairbrain4

Yeah, it’s a mess of a state! Luckily, I live in an area that hasn’t been taken over by homeless camps. We’re in Rancho Cucamonga. We talk about leaving a lot, but we have good, stable jobs here and we love our neighborhood/neighbors. It is so expensive here too 🤦‍♀️. Husband and I are both born and raised in CA. He’s from central CA…homelessness is really bad up there. Just visited family last month. Maybe one day we’ll leave…but we don’t know where we’d go! Oh and I told him I I won’t move without my mom or sister, lol!

hairbrain4 profile image
hairbrain4 in reply to Jer29-11

Rancho Cucamonga... I worked there for about 5 years at what used to be West Coast Liquidators (Pic n Save/McFrugals) warehouse as head A/P coordinator. It was next door to the prison. We watched the prison being built. I liked that area but back then there wasn't much around. I lived in Carona at the time & carpooled with my boss up Hwy15.

Sandydemop profile image

I'm in NY. 12 years ago diagnosed with RRMS. now secondary. I found out because i was extremely forgetful and MS runs in my family: mother, sister, maternal aunt, possibly my first cousin who doesn't want to know.

mrsmike profile image

NY, PPMS, drop foot, and no one else in my family that I know of.

NorasMom profile image

Ohio River Valley region, RRMS, 40 long years of being ignored by doctors before finding a lovely neuro who actually listened, and no one else has MS, but AI disorders are fairly common in our family.

Amore55 profile image
Amore55 in reply to NorasMom

I grew up in Cuyahoga Falls, near Akron.

NorasMom profile image
NorasMom in reply to Amore55

I'll take Idaho any day! But you can keep the mountain lions.

Cutefreckles72 profile image

Atlanta, GA., PPMS, (drop foot) Brain/Spinal Cord MRI, yes it does

Midnight-Blue profile image

Hi! I am in Texas but I originally from UpState New York. It was a fluke actually that I even got tested considering around 8/2015 I had an appointment withb a neurologist for some pain I had in my neck. He had a MRI run & one of my head (for some unknown reason I felt!) and informed me I had arthritis in my spine & neck AND something called lesions. Then he dropped the bomb - I had MS! So, after saying a few “choice” words, & telling him he was wrong, I walked out of his office . Thought no more about it untill 2017. I was lesbng a store when my legs must have weighed a ton because I could move them! I made an appointment with that neurologist (The one that was wrong but he was the only neurologist on me medical plan.) O met with him, asked him what the hell do I have? Said he told me a few years prior: I had MS! Does not run in either side of the family (Everything else does tho! 🤭) & my Sigmificant ( for over 27yrs) Other does not want to talk about it.(If you don ‘t see it or talk about it, it (In this case MS) it will go away! And, that is my MS story! I don’t care that I have it; I really don’t. Why should I? No matter what I do, it won’t change my diagnosis. I just “go with it”! Things could be a lot worse.

Ethyrum profile image

From PA, still RRMS (I think?). Right side of face was numb and poor balance. First internist didn’t take me seriously, so I found a second one who did. He ordered an MRI and that told the story. My mother had MS (so when I had those initial symptoms, I immediately knew)

cindyrn68 profile image

I'm from NY. Live in SC since 1996. Was dx w/ RRMS after about 20 years of visual and balance issues. One day I got really overheated doing yard work and my vision and balance went kerflooey. My husband thought I was having a stroke. I was admitted to the university hospital and dx w/ MS. I have a cousin & sister with MS and another sister who almost certainly has it.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to cindyrn68

Kerflooey! I love that word! Although I'm so sorry you had to find out that way! 🤗💕🌠

starlight5 profile image

Michigan. Very benign ms symptoms went undiagnosed for 20 years, officially diagnosed RRMS in 2014 when spreading numbness from ribs to feet began which never remitted and slowly progressed. Numerous other ms symptoms since then, none of which ever remit. Mostly spinal lesions. Thankful that I am the only person in my family with ms, pray it stays that way.

Good to have you back Jesmcd2 Have a great day!🌞

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to starlight5

Have a wonderful day also, and ty starlight5 speaking of stars! The perseids meteor shower is gonna peak on the 12th, if you can watch it!🤗💕🌠

starlight5 profile image
starlight5 in reply to Jesmcd2

Thanks, I will try!

Amore55 profile image
Amore55 in reply to Jesmcd2

Jes, my oldest son has his birthday on the 12th. The night he was born, my husband left the hospital and stepped outside to see meteors going! It was quite a celebration!

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to Amore55

Then make sure you get out and see them!🤗💕🌠

Kenu profile image

Pocatello Idaho, rrms Lost vision in right eye 👁 had ms lesions behind it, was sent to Moran Eye Center in SLC Utah. Diagnosed 27 years ago and been on seven different DMT’s. Have an AFO and still drive and live at home. No one in family has had MS that I know of🤷‍♂️ Been quite a journey 🤪😆🙏😉

MarkUpnorth profile image

From Chicagoland. Came down with RRMS after spending a half decade in the sun of El Paso, TX. After coming back to the midwest and lack of real sun, along with a two decade run with extremely high stress, developed optic neuritis. Have had optic neuritis 7x now over the years, along with approximately 90% of my neuro's what's wrong with you wrt your m.s. list, past and present. After progressing to a life of deep deep brain fog, I found with much effort and time dropping the DMT's (at my neuro's recomendation) after living with flue like symptoms for years from the DMT's, I'm now on no drugs, for anything. I've realized diet pulled me back to life with the living. I still have a very large gift list due to M.S., but getting better, slowly, with time. I have a cane, one if several I used for many years, mounted on the wall of my home like a trophy fish! Heat still gets me, but it just broke, sunny and cool, so I'm doing Great!🙃

MsBoo profile image

From MI, live in Memphis, TN now..now PPMS , RRMS 1995 was in car accident.. MRI of head and neck.. 50 leisions.. But was told that I had symptoms since 1975. As far as I know it does not run in my family

Jer29-11 profile image

Hi!!! I’m from Southern California. I have RRMS that was diagnosed very dramatically in 2019. I was intermittently losing motor function of the right side of my body. My leg would give out, arm wouldn’t work. It knew something was wrong, so booked a dr’s appt a month out…then, my speech suddenly became impaired. Hubby rushed home from work to take me to the ER (my mom was begging to call an ambulance 😳). Had a total of 2CTs, 4 MRIs (brain and spine, with/without contrast) before I was diagnosed. Total of 5 days in the hospital. Also had an almost year and a half year old at home, who I was still breastfeeding 😭. My maternal grandmother had MS.

mrsmike9 profile image

Transplant to Indiana from Massachusetts. RRMS. Kept falling but it took a broken arm (4 places) for them to do an MRI. I had a cousin who had it.

cljones profile image

Grew up in Kansas City live in Arkansas now. I have ppms. Wasn't told what I had at first because doctor said doesn't matter it's all MS. Finally have determined it's ppms because I don't have relapses just steady progression. I suffered from drop foot, numbness in feet, left leg I couldn't lift it just drug. Was diagnosed in 2014 with ms. No one in my family has it but there are lots of autoimmune diseases they do have.

bavery207 profile image

I am from Maine. I have PPMS. I was dx in 2015 (at age 65) when I had an MRI for something entirely different and lesions were seen. Several tests later and a couple of trips to Boston to see specialists they decided it must be MS. No one in my family has this disease.

Amore55 profile image
Amore55 in reply to bavery207

My Mom was from Wiscasset. We spent every summer there! I love Maine. Lobster, crab rolls, smell of the ocean, clam digging. What great memories.

Tazmanian profile image

From NJ I have RRMS

For a couple of days I couldn't speak right, my doctor said might be TIA's had a bad reaction to medication

Went to hospital and five days later I was diagnosed with MS

agate profile image

Originally from Chicago, where I lived for about 25 years. Have also lived 11 years in Arkansas, a couple of years in MA, but have been in the Pacific Northwest since 1981. SPMS, diagnosed in 1980. Nobody else in my family (that I know of) has had MS.

Mollyabigail profile image

What a good question! I have enjoyed reading all the replies. I am in the boondocks of north Mississippi. [you have to spell it out, because the abbreviation is 'MS']. My diagnosis is a long story, but finally happened a month after my 60th birthday. My less than stellar neuro said, "probably RRMS", when I asked her what type I had. It does not run in my family. (to which my wise -acre sons would say, "No one runs in our family").

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to Mollyabigail

🤣😂 I like you're son! And maybe you need a new MS Neuro? 🤔 🤗💕🌠

twooldcrows profile image

woke up and couldn't talk right ...slurred and left side of my face was numb ...went to the doctor and he said he didn't see anything wrong so i asked the girls at the front desk what i should do for i had just moved up here and didn't know any other doctors and they sent me to a Nero doctor and they checked me all out and ordered an MRI and then went back and was told i had MS ...another doctor said i had a stroke which i didn't have ...went on several meds ..had the flu like feeling for ever and then a specialist in MS can to the office and i have been with her ever since and when she started her own office i went with her ...in the beginning use a cane all the time now only on tired days or going to be walking long time where there isn't something to hang onto like a cart or if like when we went to DisneyLand i used a scooter ...have one for when we go to family picnics and will be walking a lot use it ...live in Oregon all of my life i am 69..have had it since for ever but not diag..till 2004...use Ocrevus and i think it is why i do so well ....as far as i know no one in family has had it but some i suspect but won't go and have it checked for it ...my main problem with it is the heat anything over 70 ..is terrible for me and the hotter i get up set and my body and mind is mush...use to lay out and get really dark tan's loved the sun ...not no more if hot out ...hahahah...hope we all can understand it more by reading about others if that helps in anyway ...hahhahah...we do still live life to the fullest and not let it stop us ...we are strong and ha if ya want it do it ...love and much happiness....oh i forgot about the trouble with my eyesight in my left eye is a mess ...hahahah...but i just keep on keeping on....loves to all of you ...

Amore55 profile image

Jes, this has been a great post. Thanks for doing it!

pamgarner profile image

originally pa. but been a southern gal for 35 years. i have spms. diagnosed in 2012 after many trips to specialists, finally a back surgeon sent me to neuro.

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