The surprise: What was one symptom you... - My MSAA Community

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The surprise

greaterexp
greaterexpCommunityAmbassador

What was one symptom you developed because of MS, but one you never even knew was a symptom of MS?

I was surprised by the cognitive changes and thought that MS had no effect on thinking - just on sensation and movement. I also didn't realize that vertigo, dizziness, and balance problems went with the territory.

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MS hug.

I called BS on the doctor that xrayed my ribs cuz how cud they hurt so bad for no good reason?

Me too. Didn’t know cog fog til it visited me. You would think as a health care provider I should know this but they never discussed in school or texts 🤪

jimeka
jimeka in reply to erash

How’s the bioness working out? 😊

erash
erash in reply to jimeka

Turned up the pulsations this AM and that helped but did struggle a bit on my walks the past few days 🤷‍♀️Hot, humid Fla maybe? Tho have my cooling vest on...it’s MS. No rhyme or reason...🤪

Aren’t you using a WalkAid (Electrical stimulation) device too? How’s it going?

jimeka
jimeka in reply to erash

Mine is a pace but I haven’t been using it while I have been in lock down as i am only moving around the house. I have an appointment in July to be fitted for it again. Hope you can beat the humidity 🤗

greaterexp
greaterexpCommunityAmbassador in reply to erash

I think we studied about 2 paragraphs about MS in nursing school. I guess at that time, it was still considered pretty rare. We’ve sure gotten an education after getting it!

erash
erash in reply to greaterexp

Hmmm...prefer we didn’t get that OJT (on the job experience) 🤪

For me it has been two things that stand out...

Balance & Fatigue.

My balance area in my brain has the most lesions. Lack of balance in turn creates fatigue.

Fatigue can create a mess. If I’m not careful it can stop me in my tracks.

These are the biggest challenges in my MS experience.

I didn’t know that Restless Legs go hand in hand with ms. 🤔

So true!

Sibrina
Sibrina in reply to jimeka

Out of so many difficult symptoms I seriously have such a hard time with rls!

jimeka
jimeka in reply to Sibrina

It’s awful, I take pramepexole for mine, it does help me. 😊

greaterexp
greaterexpCommunityAmbassador in reply to Sibrina

I take gabapentin, 300 mg., at bedtime, and it seems to have helped with the leg pain and RLS. It's sure worth asking your doctor about some medication of some sort. We need our sleep! I hope you get relief.

I have always had this ripple kind of spasms in my back never thought it was MS related till I started getting the same kind in other parts of my body

mine was a muscle spasm. people kept telling me it would go away. it didn't it just got worse and my walking suffered from it.

greaterexp
greaterexpCommunityAmbassador

Another symptom that surprised me was the variety of paresthesias. Itching, the sensation of bugs crawling just beneath the skin, the sensation of burning or cold, and the list goes on ad nauseam.

Jesmcd2
Jesmcd2CommunityAmbassador

Love your question greaterexp ! I have to say it was the heat factor was the most surprising thing for me. 😓 I love the sun!!!!! And now. Not so much.😐🤗💕🌠

greaterexp
greaterexpCommunityAmbassador in reply to Jesmcd2

I had no clue that heat was a big issue either.

My latest symptom is vibrations going down my right arm, every morning now when I sit down.

greaterexp
greaterexpCommunityAmbassador in reply to jimeka

Don't most of us feel that the addition of new symptoms is always a surprise. Is MS the gift that keeps on giving?

Where can I retuen it? Has to be the worst gift 🎁 ever! I tried the dollar store but they claimed not to know what it was

I've had the cognitive and memory issues almost from the start. Vertigo and lack of my hands doing what I wanted them to do were my very first noticeable symptoms that got me on the road to diagnoses. After reflecting over the years I may have had MS since the early 90's. I was blowing my fatigue issues off as sleep deprivation. After each of my kids births I had major memory issues as well. When i brought it up with the doctor she told me that it was my hormones all out of wack plus not sleeping well because a newborn wanted attention at all hours of the day and night. "It's normal. Don't worry about it. You'll be back to normal in a few months." Now i wonder about that.

No symptoms surprise me, greaterexp I consider everything to be a symptom of 'ms', until my neuro tells me that it isn't. I trust them with that. I am not sure of your question so I am unsure that I answered it properly :-D

greaterexp
greaterexpCommunityAmbassador in reply to carolek572

No symptoms surprise me any more. But I had no idea what was in store for me or anyone with MS based on the very limited knowledge I had at first. This site has been a wonderful source of information about what is "normal" for MS.

I agree with you in that this forum has been a wonderful source of information, support, and caring individuals like you, greaterexp Thank you, and Keep Smiling :-D

When I had my first symptoms two of them were pain and fatigue. The doctors said they weren’t MS symptoms so I was stumped. Of course that was 40+ years ago. For many years I kept asking where the pain and fatigue was coming from but got no good answer. I don’t like it but at least I finally found out that they weren’t just in my head 🤪 and was almost happy!

greaterexp
greaterexpCommunityAmbassador in reply to Morllyn

Yes, after the CIS, I had leg pain for years with no answers. Now I understand that it was the MS all along, but I never knew pain was common with MS until I was finally diagnosed and found this site.

About 45 years ago, when I was driving a school bus, and being a teacher's aide, there were a few days that I refused to drive the bus, because my head felt strange. My co-workers and principal thought I was just trying to get out of driving the bus, but I knew that I should not be driving a bunch of kids on a bus feeling like that! Also, when I would get home all I could do was lie down for a while and rest, then I could get back up and fix supper. Also, I could not stand to be in the sun and get hot. It made me totally wilt. Nothing made sense then, now it all makes perfect sense. It all goes together in the same bucket! Sleep problems! Dizziness, weakness! Finally it has an explanation. Does make you feel somewhat better, doesn't it?

greaterexp
greaterexpCommunityAmbassador in reply to 4fishylady

Yes, I remember feeling mainly relief when I got the diagnosis, for I finally had an explanation for all the strange symptoms I’d had for years, and to identify the neurological event as a CIS instead of stress.

Fatigue! Frequent urination also

Altered color perception in one eye and tinnitus.

I don’t think you can understand cog fog until you get it. I also don’t think mine is like yours or anyone else’s. The nurse giving my last infusion was unaware of it.

greaterexp
greaterexpCommunityAmbassador in reply to kdali

I’m sure you could really educate medical or nursing staff about what MS is really like.

kdali
kdali in reply to greaterexp

They wouldn’t like my class 😂🙃

You did know about these things you just forgot about them because of cog dog!

The itching that comes and goes...oddly enough, only never on my feet

Seizures! It never occurred to me that MS could cause seizures!

I called my Family Dr. when they first started, and he said to call my Neurologist, because he had no idea! When she told me that my seizures were caused by my MS, I was flabbergasted! Yes, MS is the gift that keeps on giving!

What are your seizures like? I had what I think was a seizure while I was in Vegas. It started in my feet and worked its way up to my head. My whole body became like concrete. I couldnt move my head or anything for a few minutes.

Scariest thing ever. I am "in between" neurologists at the moment. Someone told me it could have been a whole body spasm...

I had 2 grand mal seizures back to back several years before being diagnosed.

hmmm,i guess the fatigue was my biggest surprise,how I can sit down for a minute and become so sleepy and nod off in a couple of minutes and the HEAT and Cold,spasms and the list goes on and so does the list of stuff i still CAN do:)

The funniest surprise I got was when I tried to put on pants and fell over🤣🤣

It was like u have got to be kidding me?

MANY things! I was always blown off as complaining about something again since since High School (prob even middle school). My mom would bring me to various specialist doctors who would either say it was nothing or find some diagnosis but claim I was being too sensitive when I said that there was something else going on. It couldn’t be just that. So... I have a whole list I could give ya. At least now I can put the puzzle together of yeah that was ms all along and yeah, I guess I’ve got that in addition. Has been a frustrating journey to say the least!

I think I was surprised by my vision changes

Each person is different inside MS.

My first sintoms were no sensibility in the lips 👄 when I was pinting them.

And after I had pain in the right hear, and hard hedeaches, and shouted out when I spoke and so hedeache. The first things, after the first in the lips 👄 without sensibility.

After no sensibility in the right hand and no possible to look well in the right eye 👁

And after 2004 problems with the right leg , also 2005 and 2006 the right arm superior part.

In all this years since 1994 till 2017, I was smoking. As my mother had cancer ( and now she is well) I stopped🛑 smoking.

I had MS in 1998, and I followed smoking.

Maybe is necessary to care to ourselves seriously.

Hey, I remember one doctor telling me that "you're just paying too much attention to your feelings!" How's that one, for a stupid doctor? And, no, we don't gotta just love 'em!

My first neuro, who was an MS specialist, asked me why I was asking questions? He wanted to know why I didn't just take his word for it since he was the doctor! I fired him and found the one I still have today 13 years later.

Mine who has now retired wud give me things to Google and write down my questions for the next apt.

Sigh. Gonna miss him. Have not found a replacement yet

Losing the ability to balance myself when I walk has been my biggest issue with MS. My thinking is good. I don't have a problem with my cognitive skills. It's just not being able to walk. MS passed my brain and went directly to my legs.

Sounds like me. It went straight to my legs. Not being able to walk and stand and keep my balance. The pan in my legs and feet also.

There are a lot of things I didn't know were MS-related. I originally thought there were only muscle-related issues. But I have had the cog-fog, fatigue, dripping water sensations down my back, numb spots on the bottom of my feet, hot/cold sensations on my forearms, swallowing/choking, numbness in my face, blurred vision. Most of these symptoms I had off and on for several years before being diagnosed. Because they happened one at a time and only for a few days I thought they were from other things that I was doing- like fatigue, I worked 60hrs a week or choking-thought I just swallowed wrong, strange sensations-thought I had pinched nerves in my back. I didn't put it all together until after my diagnosis and a lot of research. I still have cognitive problems, mostly recall -not cog-fog, and the numbness on the bottom of my feet but the rest of the symptoms have disappeared since I started on Ocrevus.

My pee problems. I thought it was because I was going through menapause. Early, maybe, but still had to be because of "The change" thing. My co-workers who were about the same age as I, agreed. Except they had all given birth, I had not. Then when I was in hospitals in 2018, I was daily being catherized, and the head doctor at one said I was asking for help to the restroom too often, so he declared I had a UTI. He put me on an atibiotic. That solved nothing. In 2019, my primary care doctor did the same thing. Same results. Wasnt until November 2019 when I went to a MS talk done by a nrurologist (not mine) who said he'd talk to his patients about urinary problems. If they denied such problems, he'd say, "You have Ms, rethink that." Well, I retought mine. I just wasn't able to talk to my neurologist about it until last week's video appointment.

I didn't know that my tripping over nothing was caused by drop foot that was also a symptom of MS. I also had balance problems and there were times I got so fatigued from being out in the heat that I would have to go to bed. I never go to bed in the middle of the day. Didn't know that was part of the MS.

Thanks. greaterexp Cog fog led to my diagnosis 10 years ago but the strangest Symptom was losing taste and smell. My legs...well that is the most recent and Most hoped it wouldn’t show up. Peeing on myself now comes with the territory.

Cognitive...definitely. I thought it was all mobility related.

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