Question for everyone about diagnosis of MS - My MSAA Community

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Question for everyone about diagnosis of MS

-j-- profile image
-j--
36 Replies

What was effected by your first exacerbation?

Mine was my hearing and "dizziness" or clouded feeling in my head. I always had ear infections since I was a child, so my ENT doctor was the first one I went to.

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36 Replies
falalalala profile image
falalalala

Foot drop.

jimeka profile image
jimeka

I have PPMS, I have never had an exasperation but foot drop and dragging my right leg was the first signs. 🦋

-j-- profile image
-j-- in reply tojimeka

I am sorry about localizing the question. I assumed that all forms of MS...RRMS, SPMS and PPMS began with exacerbations.

jimeka profile image
jimeka in reply to-j--

I didn’t know either, so no problem, we live and learn, blessings Jimeka 🤗

-j-- profile image
-j-- in reply tojimeka

Thank you

rjoneslaw profile image
rjoneslaw

I guess my first would be my walk the dropfoot but at the time I wasn’t diagnosed with MS. When I was diagnosed it was a muscle spasm in the right leg

-j-- profile image
-j-- in reply torjoneslaw

Sorry you had to wait. I hope you are doing well.

Iona60 profile image
Iona60

I had double vision and loss of balance which led me to the ER.

Peruzzot profile image
Peruzzot

The first one I noticed at the time was vertigo and lack of hand control in both hands.

Later on I got to thinking that sudden onset of double vision and blurry vision that lasted only a few hours and went away just as quickly and never came back might have been the first symptom but doctors say that because it lasted less than 24 hours...no. ya...whatever. the other day and actress mentioned that her first symptoms had been fingers twitching and that reminded of of when my left thumb and index finger twitched off and on for several weeks. I never got that checked out because at the time it was only an annoyance. So maybe that was the first symptom...who knows?

erash profile image
erash

TN trigeminal neuralgia or foot drop

agapepilgrim profile image
agapepilgrim

Blindness in left eye temporary came and left, come and left, several times when 17. At that time doctor wrote it off as senior stress in high school. After many eye problems, and left eye still having bouts of blurriest, at 69 it was diagnosed as MS related. Optic neuritis now diagnosed.

anaishunter profile image
anaishunter

Double vision led me to the ophthalmologist and initiated a fairly quick diagnosis process.

Now that I'm more educated about ms, I can say that many signals were there before all pointing to ms too.

-j-- profile image
-j-- in reply toanaishunter

Yes. I agree. We all are adapting to our particular issues, and to accept and moving on is our best medicine that is free, although it is hard for so many still. It hurts my heart

goatgal profile image
goatgal

-j-- My first lengthy exacerbation was optic neuritis: the first doctor had no idea what was going on; the second said I had a brain tumor; the third diagnosed ON but made no mention of MS. When I was diagnosed many years later, my entire life was upended. At that time. I was living my dream life in retirement on 20 acres with 13 milk goats, 40 hens, extensive vegetable gardens, and selling sourdough bread, jams, eggs, and vegetables at a farmer's market. Suddenly, I was unable to keep up with everything I had been doing. I sold the place (taking a terrific financial loss), moved and recalibrated my life goals. It took about five years to understand my new reality and begin moving forward optimistically into my life.

-j-- profile image
-j-- in reply togoatgal

I am so sorry you had to jump around diagnosis'. That happens to so many of us. We all had to go and get a disease that insists on being different and mysterious from one person to the next.

goatgal profile image
goatgal

-j-- Like so many others, I have had very few classic exacerbations. Most manifestations last less than the length of time to be called an exacerbation.

pamgarner profile image
pamgarner

mine was weakness in my legs and muscle spams in my rib cage,(ms hug)still is, that is what got me to dr

-j-- profile image
-j-- in reply topamgarner

Thank goodness you were able to get to the doctor. Many people think it is better and fluffs it off as a fluke

Kenu profile image
Kenu

I went to bed fine and woke up blind in right eye 👁. Went to ophthalmologist and then sent next day to Moran Eye Center in Salt Lake City and confirmed MS Ken 🐾🐾

-j-- profile image
-j-- in reply toKenu

Wow that was scary I am sure, but you seemed to get connected to a source that moved the diagnosis along

Mjcarbo profile image
Mjcarbo

Foot drop. My leg dragged so much that I started to call myself "Igor". My family physician just diagnosed circulation problems and prescribed epsom salt baths. It wasn't until I lost some vision in my left eye that my ophthalmologist sent me to a neurologist and I got diagnosed properly. This was in 1974. An eye doctor can actually see the damage to your optic nerve. It's probably more difficult to tell with other symptoms.

-j-- profile image
-j-- in reply toMjcarbo

Thank goodness you were finally diagnosed. I hope you are doing well

jackiesj profile image
jackiesj

so are we talking about first signs when we say exacerbations.? I had no idea about MS until one day I woke up and couldn't walk....

-j-- profile image
-j-- in reply tojackiesj

I am sorry. That had to be so scary. I hope you are doing well

janetb1968 profile image
janetb1968

My balance which a bit wonky at times xxxx 🙄🙄🙄🙄🙄

Doubled51 profile image
Doubled51

Woke up with very little use of left hand and arm and my walking was very weak and I staggered pretty bad. So my wife took me to Er and 3 MRIs a spinal tap and 5 days of steroids I was released from hospital and diagnosed with MS. That was April 2017 at age 65.

Donnie

-j-- profile image
-j-- in reply toDoubled51

Hope you are doing well

Doubled51 profile image
Doubled51 in reply to-j--

Thanks.

Donnie

kdali profile image
kdali

I had an episode of ON 15 years prior to the ON that led to my diagnosis.

-j-- profile image
-j-- in reply tokdali

Hope you are doing well. I do not know what part of episode, but I have a scar and optometrist was able to tell I have damage

kdali profile image
kdali in reply to-j--

Thanks! I have learned my way around the eye damage and upgrading my car has helped tremendously. Same here, they could see I’ve had damage in both eyes 😵

-j-- profile image
-j-- in reply tokdali

Great to hear that. Take care

sashaming1 profile image
sashaming1

Vision issues.

-j-- profile image
-j-- in reply tosashaming1

Sorry. I hope you are doing well. I cannot trust my peripheral vision or looking behind me. So I try to avoid.

HensTooth profile image
HensTooth

Really bad muscle weakness and cramps. I was putting my shoes on and my core (stomach) muscles would cramp with the “effort”. Then I couldn’t chew food because it was so “tiring” to my jaw muscles. Then I’d reach for things and completely miss them (like cupboard door handles or a coffee cup) when I was looking straight at them! Then I’d have “cadaver appendage syndrome” where I simply couldn’t lift my arm or leg. Then numbness in several toes or in a patch of skin on my back.

None of it made sense... Until several months of testing led to an MS diagnosis.

mm1527mm profile image
mm1527mm

Facial numbness on right side lip face cheek tongue went numb for days until admitted to hospital ans given prendisone

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