Question for everyone about diagnosis of MS - My MSAA Community

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Question for everyone about diagnosis of MS

-j--
-j--

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.

36 Replies
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Foot drop.

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

-j--
-j-- in reply to jimeka

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

jimeka
jimeka in reply to -j--

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

-j--
-j-- in reply to jimeka

Thank you

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--
-j-- in reply to rjoneslaw

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

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

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?

TN trigeminal neuralgia or foot drop

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.

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--
-j-- in reply to anaishunter

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

-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--
-j-- in reply to goatgal

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.

-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.

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--
-j-- in reply to pamgarner

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

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--
-j-- in reply to Kenu

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

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--
-j-- in reply to Mjcarbo

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

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--
-j-- in reply to jackiesj

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

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

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--
-j-- in reply to Doubled51

Hope you are doing well

Doubled51
Doubled51 in reply to -j--

Thanks.

Donnie

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

-j--
-j-- in reply to kdali

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
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--
-j-- in reply to kdali

Great to hear that. Take care

Vision issues.

-j--
-j-- in reply to sashaming1

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

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.

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

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