What was your 1st question? Thought? Did you even know what MS was?
J🌠
When you were 1st diagnosed... - My MSAA Community
When you were 1st diagnosed...
Jesmcd2CommunityAmbassador
Written by
Jesmcd2
CommunityAmbassador
To view profiles and participate in discussions please or .
59 Replies
•
My first question was “am i one if jerrys kids now?” Had no clue what MS was. Never heard of it. After that it was just numb and shock as doc explained
huh, what is ms?
before I could have any questions, my rheumatologist told me i need to see a neuro and he explained MS and why he felt I had MS because of the legion he had found on my MRI . Then when I met the neuro after he intro himself he began to explain to me why I was referred in great detail and what the next steps should be.
Before my mind could start racing a mile a minute everything was explained to me. Even the fact that its not know why some people have MS.
I had no clue what MS was but after my 1st dr appoint I did
I was in the hospital 3 MRIs and a spinal tap and enough blood test to run me low then the Head Neurologist came in and told me I had MS with no explanations at all. I thought I’d been given a death sentence. I’d rolled over and cried for an hour then I looked it up on the internet and found out the definition and I was gonna live.
Donnie
no so i just went on my way and then read the material about it...then was scared ...
1st question: can we move forward with fertility treatments? Thought: wow, this is far worse than I imagined 😱🤮
Knowledge: I only knew of horrible MS cases, young primary and end stage.
Way back in 1994 (I was only 25), I thought "rule-out MS" when my PCP sent me to a neurologist for abrupt vision problems (but it wasn't my eye per se my left eye wasn't moving fully over to the left when I was looking at things). Needless to say, after a simple MRI (without contrast of course) and a neurological examination=definite MS dx!
In 1994, the neurologist told me "young women tend to do very well with MS" and to live my life and to avoid the MS Society. I guess he knew I knew NOTHING ABOUT MS and tried to "do the dx and adios" thing as Betaseron had just hit the market in the US and was dispensed via lottery.
Fast forward today=thankfully there are many tx available from which to choose. DMT=MUST CHOOSE ONE or A FEW. As NOTHING STOPS THIS MONSTER! But, FEAR can be a GREAT MOTIVATOR! As I was scared silly! I thought the "faster I ran and the more I achieved" I could out pace this MonSter.
And, I did by completing BOTH my BS and MEd while working full time and studying part time at night. Until our president retired at the University that I worked at, and "restructuring" and job loss occurred which forced me to seek SSDI at age 45 (but 20+ years after dx and 17+ years on Avonex).
Although I started Avonex THREE YEARS after my dx, I still continue it today. My MRIs show tons of lesions and black holes (but MRIs stable) a few mild sensory flares though. Fatigue and cognitive dysfunction are my biggest complaints. I still "look so good!" Damn it! 😜
Wow, DM0329! That's impressive...a BS and a MEd while working FT! Kudos to you!! 👏👏
Dx 2010, wasn’t bothered about the dx, because they told me that I needed a trans thoracic discectomy, as my T7/T8 disc had sedated my spinal cord so they needed to remove that disc immediately to prevent paralysis. Also they told me that I had throat cancer, so ms was pretty minor in comparison. 🤷♀️
I had heard of MS but couldn’t remember what it was. So my first question was “what is it?”
I knew MS was a neurological disease that crippled you. Annette Funicello had it. Before I was diagnosed my face & tongue were numb on the left side I was thinking I had something out in my neck, but silly me I knew that facial nerves weren't from the neck from cosmetology school, but just didn't think about it. I had an appointment with my PCP to have my hormones checked cuz I felt like I was losing my mind. I couldn't remember anything, especially short-term memory. Trying to recall someone's name was just not there. The dr did a couple of tests, drew blood, and said he was sending me for an MRI on a Saturday. They don't do MRIs on Saturday unless it's an emergency. Then I was scared. Doc said he wasn't sure what it could be. So I was thinking brain tumor, or worse, a malignant brain tumor. MS never crossed my mind. I was a new Christian and prayed harder than I had ever prayed before. I didn't want it to be a tumor of any kind. Then doc's mother-in-law came to see me at work (Walmart) the next day and told me to take this pill per Doc. (We live in a small town in Arkansas and Doc & his family were our friends) It was a muscle relaxer as I also had cramps in my legs. Well, I was at work and couldn't take it then. When I got home my husband was very solemn & asked me how I felt. Then he was the one that told me my MRI came back consistent with MS. He, the doc & his wife all decided that if he told me I wouldn't take it so hard as my husband thought I might go off the deep end. The first thing I said was "Praise God it's only MS!" I still didn't know that much about it but I knew it wasn't going to kill me anytime soon. That was almost16 years ago. I was determined to not let my MS progress. I researched MS on the internet and read everything I could and prayed. It has worked so far. I have had very little progression. I have numbness on the bottom of my feet and a little more cognitive problems but that is it now. Everything else disappeared when I started on Ocrevus. I have always been on a DMT WHICH IS VERY IMPORTANT.
I had lost the vision in my L eye and the dr I worked for had his father and sister in ophthalmology he called his sis. She called back and left a msg (a long one) and he finally handed me his phone and said listen to this. Before we headed to the medical center 2 hrs away a co-worker said she had a friend who also lost vision and was diagnosed with MS. Without that heads up I would have been totally sideswiped with the possibility. When I saw the neurologist he said we were gonna crash schedules and had labs and an MRI. As my head was totally immobile I had tears running into my ears, past the earplugs and there wasn't anything I could do to wipe them away. I keep thinking...MS, Multiple Sclerosis, MS, Multiple Sclerosis. Then I literally felt a hand touch my shoulder and it suddenly changed to MS, My Savior. I was still scared and didn't know much about the disease but felt comfort coming from One who would keep me in His Hand. 🙏
MS my Savior. I never thought of that. Thank you for bringing that one to my my mind. What a blessing that is.
Thank you and God bless and keep you.
Donnie
I was thankful to know there was a reason for the symptoms and that the symptoms could be treated and i could do something about it
I was diagnosed in 2015. I was 55 years old. My MS started with transverse myelitis; a symptom of MS. Boy what a symptom it was!
My first symptom was being paralyzed from the waist down within three hours.
I was diagnosed with TM. I had spinal tap, MRIs and diagnosed with MS the next day.
I was in shock because of being paralyzed. When I heard MS I shoved it to the back of my mind. Overall I was scared to death.
I had a family member with MS so I knew what it was. But their MS symptoms didn't compare with mine.
Within five months I was walking with a walker as I do to this day. Numbness and nerve damage in my legs , just to name a few of my symptoms.
Thanks for the question!
I'm sure you were in shock and scared to death!! Everything happening at once like that! Yikes! Its why they call it the snow flake disease ❄️ Everyone's MS is different! 🤗💕🌠
I understand
After nine years of trying to find out what was wrong. I looked the DOCTOR in his eyes, said thank you for finding out.
1st question? "When will y'all STOP shining bright lights in nmy eyes?!?!?!?" What did I feel? Terror! 6 years prior to my diagnosis, I had walked down the same halls of the University Hospital that I was walking down n 1995 dealing with the daignosis of a brain tumor my mother had gotten.in 1995 I had seen several doctors for a week before the official MS diagnosis, and they had mentioned "brain turmor" a few times, talking among themselves.
Did I even know what MS was? YES, I did! I had recently seen a made for TV movie about Annette Funaccelo and her battle with Multiple Sclerosis. So it was actually a relief for me! That brain tumor had killed my mother.
🤗💕🌠
I am sorry .
I had an MRI ran to see if I had a brain tumor on Thursday and had I first attack from our mutual friend on Saturday so needless to say it scared the crap out of me.🤭😞.
Donnie
I knew several people with ms so my first thought was that I wouldn't be able to dance with my son at his wedding... he was 12.
I was just relieved to find out why I kept falling down. I was, however, in shock for awhile and didn't ask anything.
I had no idea what ms was. I never heard the name. My only question that I can remember is if I could pass it on to my children. I was 19 and just out of high school.
That was also one of my questions, but I had 3 children in their 20's. It shows how important the family you had/planned to have was. How are you doing now?
Good morning, sorry it's taken me so long to get back to you. I am doing good. I can still walk and do most everything I wish to. I don't work anymore but that gives me the time for other things. Life is goodHave a great day.
Didn't know what it was. Did research on my own -- later.
I like the ... Later.... part.. me to!🤗💕🌠
No, neither now, totally.
I don't think any of us really know Violonchelo 😔 we just wing it! Just ask us tho! Someone might be able to help!🤗💕🌠
My MS was in 1998. I was born in 1968.I begun to work as a teacher for foraing people of all Europe and some from USA , in 1991. After seven years I had MS.
And after I follow working till 2006.
If to smoke is the cause of MS, I don’t know.
I begun to smoke in 1995 till 2017.
But the moment that I smoked more was since 1995 to 2006.
If the cause of my MS was the cigarettes, I don’t know.
When I was smoking that years, I was living in a city of the South with always sun, with light and, with a short winter. Maybe we had a sunny winter, and Mediterranean.
So, I had vitamina D during 21 years, but the MS happened.
So, vitamina D from the sun didn’t help me nothing for not to have MS.
And now my illness is stable since 2007.
No one knows what causes MS Violonchelo . No one knows why one person gets it and another doesn't. Wish we did! Or even why it hits when it does. It just is... I was an on and off again smoker for yrs. And would spend as much time as I could outside, which was always!! So, who knows.. 🤗💕🌠
first thought was a pinched nerve from a colonoscopy because my left arm wrist area was getting numb so I went to my gastro doc,he said I could give you some meds or try tylenol, started get worse went back to doc did ekg heart ok sent me to nuero, does carpo test not carp suspects something else maybe ms and asked it I did meth of I did not do meth, order mri, go back for results, MS I heard of ms from a friend who said he could not go on ladders he could get dizzy, I didnt like this nuero, his receptionist was yelling at some one on the phone, the nuero told me about two meds, avonex and something else, so he writes them down on a post it and said look them up and come see me in a week, so when I go to see him he asks me which one I picked, I told him that I was not going to do anything about it and left, what I did was find a newly diagnosed group to find out what this ms was and I am glad I did, I told them what happened with this neuro and they gave me a number to another doc, so when I left the meeting I made an appointment with the new doc, saw him for a few years , he retired and Now I see his partner, it was the best thing I did was go to that meeting, you share about yourself like a 12 step program meeting, made some friends there too, I found out I have MS december 2012, Thanks for letting me share. By the way my name is Richard C.
Good for you, standing up for yourself and taking your care into your own hands.
Hey!! How are you.
I am fine.
Great question.
I have just a one word answer.
CRAP!
😎
Hi Atlproctor I'm good! Thanks! 😂 And yup! 🤗💕🌠
I was relieved it wasn't a brain tumor or ALS as those seemed to be the other options based on my symptoms
Me too.
DX 8/2020. I am still trying to accept it. I was relieved for an answer and very relieved it was not a brain tumor- they run in the family. In the world of Covid, my diagnosis was over the phone so I was completely shell shocked and did t ask hardly any questions. I am scared but trying to press on with a plan to live on my terms.
I can understand how scared you are Tulip77 ! 🤗 I was scared to death! Then realized, I can be scared... Or I can figure out how to ride this roller coaster with some great friends here! You can ask anything here! 😊🤗💕🌠
I'm sorry Tulip77 that you had to find out in an impersonal way, over the phone. I was dx 3/2014 and many days I'm still trying to accept it. It's always a shock but glad you are pressing forward with your plan! This is a GREAT place to come and cry, share successes, frustrations, etc. Take joy in the good days and cope in whatever way you can or need to on those bad ones (a warm drink in winter and cold one in summer, the couch and Netflix helps me.) ❤Pam
I was shocked depressed had bad anxiety didnt know what it was or how it would affect my life. Glad I am informed now and found this support group. 🙂
Scared to death because the only thing I knew about MS is that it's degenerative - I thought there was no medical treatment for it. but also relieved that I finally knew what was wrong with me.
🤗💕🌠
For a couple of years before I was diagnosed with MS, I'd been having troublesome symptoms that led me to worry about some kind of tumor, like a spinal tumor--something that might be speedily fatal. By the time I was diagnosed I had learned what MS was but not much about it. The neuro said he had nothing to offer and I would learn to live with it. I made a beeline for the public library and looked it up in an encyclopedia. It said: "Death comes at about 10 years after onset." I wasn't about to accept that, and it must have been an outdated or poorly researched encyclopedia because as I read other material about it, I found that even then (1980) that was not the usual prognosis. That was a relief, and it was a relief to find out I didn't have a tumor that would finish me off.
What can I do about it? was my first question.
I was relieved to find out why I was feeling the way I was feeling.
I knew a bit about it as a good friend has it.
Not what you're looking for?
You may also like...
CAN YOU REMEMBER WHEN YOU WERE DIAGNOSED
I can remember when I was diagnosed with MS. I remember when it was 2004.
I remember because...
How did you cope when you were undiagnosed?
I'm currently 'in limbo' because I'm having to wait for my LP to be re-done. I did test positive...
When you were a kid what did you do to entertain yourself?
When I was younger we were always outside doing something
We played with glue,
have spit ball...
what were you told ?
What were you told about your DMT. I'm reading here that some of us believed or were lead to...
When we are newly diagnosed...
I've reflected at times about the way I was handed my diagnosis. I have read here about your...
Curious what all of you do when you cannot sleep
Newly Diagnosed
