This is my first post.

[cheilke]

I've been casually reading the occasional post in HealthUnlocked for the past few weeks. Today I read a post from jkdavid99 and was relieved to find that my fairly new problem with finding words is probably MS-related as opposed to geriatric dementia. In general I'm holding up fairly well as I started showing symptoms in 1983. I'll be excited to learn from the experience people in this group have.

[Jesmcd2 CommunityAmbassador]

Well hi there cheilke so happy to have you join us. Everyone's input is important to us. Yours included

Have you been dx'ed since '83? Or just symptoms? I'm learning all the time. I actually have 4 books that a friend gave me about ms, that l haven't read, l think l retain more info on here than "book" learning, if that makes sense.

Hope your doing well, and jump in anytime and if you figure out the speech thing let us know

[WAshingtongirl]

Welcome, cheilke! We're all happy to meet you and hope to get to know you better. I hope you've found our posts to be warm and humorous as well as informative. I haven't been here that long, but I already feel at home among my new friends. (If I can only remember their names! 🙄) But seriously, you bring up a good topic. I'm 58. My first symptoms showed up in 1991. Because of my age and increasing cognitive issues, my neurologist sent me to a speech therapist last year for testing. It was determined that MS, not age, is the culprit.

Have you spoken to your doctor about this? Because something other than age or MS could also be causing this, I'd make sure other causes were ruled out too.

I'm so happy to hear you're doing fairly well after all these years. I pray it continues that way!

[erash in reply to WAshingtongirl]

Tutu, I'm 58 too...and while I was officially diagnosed 8 yrs ago, my first symptoms were likely in 1986. intermittent right foot drop with long distance running. The neurologist did no testing, said it was "paroxysmal kinesthetic blah blah blah" and never even considered MS. Well, there wasn't much to offer for MS in 1986. So likely made no difference...

[WAshingtongirl in reply to erash]

You've had it a long time, Erash. I'm happy you were able to work as long as you were. I know...never long enough when you would rather continue doing what you love. (By the way, how is the painting coming?) Were you a nurse practitioner back then? Any cause for you to question your doc's 'diagnosis' at the time? I kept thinking it was my back or a reaction to the muscle relaxers after hurting it. That-or heavy metal toxins. Funny how my initial symptoms matched that too. I took water and soil samples from beneath where underground gasoline tanks were buried (for my site assessment reports). I was SO careful. But still, I really thought it was my injured back or exposure to the toxins. Couldn't understand why they kept batting around 'MS.' Had never heard of MS!

[erash in reply to WAshingtongirl]

Tutu, I am VERY grateful for the life I have and the wonderful career I've had.

In 1986 I was an Army Nurse. Weird but in the back of my mind, I always knew I would get MS. I even told a few people this. Premonition? Hopefully not self-fulfilling prophecy 🙁

Painting IS coming along. Thank you for asking. I have the background done. It's an abstract Picasso-ish painting entitled "cog fog". Can't wait to share it with everyone 😊

[WAshingtongirl in reply to erash]

Can't wait to see it! I've always wondered what the inside of my head looks like within the black and white lines of my MRI 🤔

You've had quite a career! But I don't think it's over-just changing. We value your medical expertise here. Hopefully you don't charge an arm and a leg. But if you do, take my right ones. 😉

[erash in reply to WAshingtongirl]

My right side is my MS side too.

Thank you! You are truly a care giver on this site too!

It's a barter system, here right? You help me...I help you--even if we just lend a good ear.

I'm actually connecting with a few volunteer organizations to see how I can use my experience to continue to help others. Met with the local NMSS chapter this afternoon and will do something with their outreach program.

[WAshingtongirl in reply to erash]

That's wonderful, Erash. It will be a win-win situation! I volunteeredat my local NMSS chapter years ago. They 'place' you where your strengths are and truly understand when you're struggling. Since then, I've volunteeredin other venues, changing as my 'talents' have. It's been a challenging year, so I'm still in the process of finding 'my new place' of service. But you're right. This is a great place to minister to one another.

[WAshingtongirl in reply to erash]

Forgot to add how interesting it is that you 'suspected' developing MS early on.

[jimeka in reply to erash]

Looking forward to it

[Jesmcd2 CommunityAmbassador in reply to WAshingtongirl]

WAshingtongirl l didn't release you hurt your back, what happened?

erash l want dibs on that painting also. l also got the blah blah blah about my foot drop also. MS never came up once.

[WAshingtongirl in reply to Jesmcd2]

Nothing big. Just heard a "pop" as I lifted a box of encyclopedias. (I'm dating myself!) And stubborn (dumb!) me, I continued to cary all the boxes downstairs-in between minutes spent flat on my back, on the floor, due to the pain. That was a Friday. Early Sunday morning, I got word that my dad died (suddenly and unexpectedly at 56). I flew from HI to FL that evening. I was in agony (and grief) while in FL. So that's my start. I was 33yo. 2 weeks after ending muscle relaxers, I was back in my PCP's office, positive that the buzzing/burning/weird sensations that started in my back were due to the injury, an allergy to the meds, or contamination from my work site. It would be interesting to hear how everyone's MS first showed itself. How about you, Jes? I apologize if you've already shared and I've forgotten. 🙄

[erash in reply to WAshingtongirl]

Tutu, sounds like a perfect storm: stress of your dad, physical stressor --> exacerbation of what was likely brewing beneath the surface 😥

[WAshingtongirl in reply to erash]

Yes, probably so. You were what, about 28 Erash? And foot drop, right? In hindsight, any stressor(s) for you? I wondered if you have/had any family members with MS since you sort of thought you might end up with it.

[erash in reply to WAshingtongirl]

Lengthy response warning 🚧

I was 28 and an Army nurse working 12+ days straight all different shifts (day, eve, nights) w/ little sleep and trying to train to run long distances. Every time I got to about the 5 mile mark, my right foot would start flapping to the ground and drag. I'd have to walk back home. That disappeared until 2010. And I eventually ran marathons (17 of them to include London and Boston).

10 yrs later, 1997, as a nurse practitioner with disrupted sleep due to taking emergency calls, I developed trigeminal neuralgia. Concerned it might be MS, I ordered MRIs for myself. Repeatedly, they were normal (my error --they were open MRIs and early lesions were likely missed). One exacerbation of trigeminal was so severe, I was down to 78 lbs., and had my husband drive me to the hospital where a closed MRI = Swiss cheese brain (lots of lesions).

TMI! sorry for the novel but it did feel cathartic to write this. It sounds sad, but I love life and love MY life. I am very fortunate and grateful. And very thankful for this forum to express my thoughts ❤️

[WAshingtongirl in reply to erash]

Thank you for the details, Erash. They help 'paint' a better picture of who you are. In my unprofessional opinion, physical and mental stress, along with sleep deprivation, may have helped trigger yours. You've accomplished much in your short 58 years. 😁 Most MSers I've met in person (and here too) appear to be/or were overachievers. I'm not saying that predisposes a person to develop MS, but I do find it interesting...Like you, I love my life (some days more than others😉). I can't express in words how appreciative I am of this site. I didn't even know what I was missing until I met you and everyoneelse here. Thank you. 💕

[erash in reply to WAshingtongirl]

No family with MS.

[Jesmcd2 CommunityAmbassador in reply to WAshingtongirl]

WAshingtongirl l had 2 back surgerys almost 20 yrs ago now. Just because l stepped off a chair. :/ l didn't jump, fall or anything. I stepped and snapped the disk in my back, which then moved into the cyatic nerve. Like you it was a Friday, and it was a wkend the the girls father had them. Because within a day l could barely walk and in way to much pain. It took my PCP a wk to figure out what was wrong with me. And wouldn't give me the time off during that time off. Grrr Talk about pain. I do remember hanging up on him when he called and said l had to have emergency surgery tho, and told him l would call him back in an hr. He was shocked. I was a single mom with 3 girls, 9 and under. They came 1st.

Anyway my 1st MS symptoms were the summer of '14 where my leg decided to do it's own *dance* there was no controlling it. Walking was just a joy :/ l couldn't wear tennis shoes, only slippers everywhere and l was soooo tired. 3 Dr's later l had my dx.

Somewhere in between l lost the feeling in my feet.

I feel like l keep getting pushed down, and keep getting up. Then being pushed down again. It's like seriously? What's next? Don't get me wrong l like my life but l keep waiting...

Sry this is so long

[WAshingtongirl in reply to Jesmcd2]

Reading this made me tear up, Jes. I can't imagine going through what you did with 3 little girls, alone. It's hard enough when you have a supportive spouse to help you, the kids, and to pay the bills. I'm so sorry.

I saw another MS t-shirt with a 'Rosie the Riveter' on it. That might be yours! You've obviously beat back rather than allowed MS to beat you down. I'' still looking for a scarecrow with MS. 😉

And I know EXACTLY what you mean about "What's next?" I'm kind of there right now. Trying to shake it off, but it's just one of those days, you know?

Thanks for sharing your story. Someone ought to start a post where everyone can chime in. For those of us mentally and recall challenged 😜, it would be easier to find these and learn about each other in one thread because it's hard remembering where you read what, when, and about whom. But I'm working at it!

[Jesmcd2 CommunityAmbassador in reply to WAshingtongirl]

Aww thank you WAshingtongirl don't tear up on my account It is what is and was what it was. We all survived it. And lm still not in a wheelchair like they kept telling me l would be. So screw um lolol

[vduckery in reply to Jesmcd2]

Hi,

Has the feelling in your feet ever returned? I am having a similar problem with my right foot. My last three toes are constantly numb and I cannot wear a closed toe shoe or the whole foot goes numb.

[Jesmcd2 CommunityAmbassador in reply to vduckery]

No the feeling never returned. And the powers at be say it's not MS related. So who knows? I did have to go a size larger in tennis shoes. And learning to walk in new tennies is always a challenge but you get used to it. You have to...

[erash]

Hi Cheilke and welcome! We all learn from and support each other. It's the best MS web/chat I've been on ❤️

[agate]

@cheilke, it's nice to "meet" you. I was diagnosed with MS in 1980 and have been kicking around various MS message boards for about 15 years now though I actually do have a life.

I've had some memory and speech problems but I'm not sure if they're geriatric or MS-related. I just want to deal with them somehow and knowing what causes them doesn't get me very far. But I can see why someone who is younger might be more concerned about the cause and unwilling to be told that a problem is age-related.

[Jesmcd2 CommunityAmbassador in reply to agate]

agate *SHOCKED* You Mean There Are Other MS Boards???? You have got to be kidding lol

[Donna_uno]

WELCOME, WELCOME, WELCOME ! !!

[Hidden]

Hey Chelike, it is MSFIGHTER saying welcome to this wonderful chat room! If you've been monitoring us for a couple weeks you can see that we become more of an extended family then a chat room. This is a very very safe place to ask questions, to make comments, or to voice concerns you might have about MS or life in general for that matter. Yes I also suffer from the "Dang i can't think of the word I want syndrome." I know it drives me nuts how about you? As soon as I stop trying to think of the word and relax the brain so to speak, or move on to another topic the word pops into my head and pooffff... it's there! I was diagnosed back in 2013 but they said I had it by then for 12 to 15 years already. I have noticed that the "Dang i can't think of the word Syndrome" has gotten worse in the last two years or so. But it comes and goes. Sometimes I do really well with the words I'm trying to think of and then it'll be a few days where I can't think of anything I'm trying to say. I'm not certain why but it drives me nuts when it's active.

Tutu and Erash, I'll be 58 in May! It seems like a very popular around here don't you think.

Chelike, we're glad you're aboard. We can always use input from any and all people with MS. Everyone has lots and lots to contribute. It's just hard for newbies to realize that. I like you to remember is that together we are stronger. And I would like to invite you to become are the latest ms Warrior. As an MS fighter, xwe never give in and we never give up. We simply fight on. So fight on Chelike, fight on!

[WAshingtongirl in reply to Hidden]

I didn't realize you were so recently diagnosed, MSFighter (or maybe I forgot 😔). For some reason I thought or assumed it had been longer than 2013. But l'm sure you knew or assumed you had MS long before your diagnosis was confirmed. 58 IS a great number! 💕