Balance Issues: Hello all! I have RRMS... - My MSAA Community

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Balance Issues

jsb0410 profile image
25 Replies

Hello all!

I have RRMS and had my last relapse in December. My symptoms have gotten much worse over the past year.

I had a course of solumedrol in December and I started Ocrevus in February.

After getting over the flu like symptoms from the two half doses I have returned to “baseline.” The only issue that seems to be getting progressively worse is my balance.

I have fallen a few times and instead of only falling to the side, I am now starting to fall backwards.

I am able to catch myself on something/someone but I’m concerned.

Is it possible to have a symptom worsen without having a flare?

Sorry if that is a silly question

I appreciate your opinions and advice

Thanks!

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25 Replies
jkdavid99 profile image
jkdavid99

Interesting that i read this. I had my first full dose ocrevus in march. I feel like my balance is getting worse as well. I dont think its a relapse but really odd. Drunk feeling all the time, falling, unsteady. Cant wait to see what others say about this. Good luck

jsb0410 profile image
jsb0410 in reply tojkdavid99

I agree it has gotten worse since the infusion. Even during my last relapse it wasn’t this bad.

Odd isn’t it...it has become very obvious/noticeable to everyone around me

Drunk feeling is a prefect way to categorize it

I laugh it off but it is still upsetting

Thank you for sharing

Be well!

Iona60 profile image
Iona60

Spasticity and balance issues both increased for me until I had my 2nd full dose of Ocrevus. I had no new lesions and no relapses. My neuro had said that benefits from Ocrevus don't begin to kick in until after the first full dose, which made sense to me why I was worsening in the beginning.

jsb0410 profile image
jsb0410 in reply toIona60

Thank you for sharing I really appreciate it! I have an MRI scheduled in two weeks so we shall see

Thank you and be well!

Iona60 profile image
Iona60 in reply tojsb0410

Best of luck. I hope that Ocrevus works for you.

mrsmike9 profile image
mrsmike9

Tell the doctor!

jsb0410 profile image
jsb0410 in reply tomrsmike9

I have an appt in 2 weeks but I will give them a call

Thank you!

sashaming1 profile image
sashaming1

Falling backwards and hitting your head can be really bad (ie. brain injury). Even wearing a helmet can be a good defense. Talk with someone at a health store / pharmacy for good methods to prevent injury. Maybe use a walker for a while.

jsb0410 profile image
jsb0410 in reply tosashaming1

I agree I need to start using my walker more I typically only use it for longer walks but until this is figured out better safe than sorry

Thank you!

sdgriffin763 profile image
sdgriffin763

In my experience, yes. My physical symptoms often got temporarily much worse without actually having a flare. By keeping notes of my activities with my physical well being - ms, I have noted that I have unwittingly contributed to loss of balance, loss of energy, and brain fog. How? Most often from a shortage good sleep, because i’ve made poor food choices, or I have over heated. The greatest single help you can provide for yourself is to keep a diary which includes activity, meds, sleep, and diet. You will begin to find what your triggers are and start avoiding the occurrence.

bxrmom profile image
bxrmom in reply tosdgriffin763

Good idea on the diary sdgriffin763

jsb0410 profile image
jsb0410 in reply tosdgriffin763

That is a great idea! I agree about lack of sleep/fatigue/stress aggravating symptoms

My functional doctor actually just emailed me a spreadsheet to keep track of symptoms

I am glad to hear that this process has helped you !

Thank you so much I appreciate your help!

dearydear57 profile image
dearydear57

I do Solumedrol infusions every four months and taken Aubagio. Sometimes, my balance isn't very good, even ithout an actual flare, but it is usually attributable to other causes, like lack of sleep, stress, or depression. When my emotions are on a roller coaster ride, so is my body. My. neuro often refers to it as a pseudo-flare since there are no lesions involved. Like others, I would recommend keeping track of your symptoms, how long they last, and what occurred right before they start. It will help both your doctor and yu get an idea of possible patterns in your disease progression.

jsb0410 profile image
jsb0410 in reply todearydear57

That is very interesting and I really appreciate your response

I do think that this could be a pseudo flare as since the Ocrevus I have been catching every virus/infection that goes by

I do think stress which I handle horribly also plays a huge role

I love the suggestion of tracking symptoms as it is hard to remember as every day is different

Thank you and I wish you well!

Bodega1939 profile image
Bodega1939

This post was and is very interesting. I will remember and do the diary. My memory is like Swiss cheese!

Doubled51 profile image
Doubled51

I’m not on Ocrevus but I haven’t had a relapse since last fall and my balance is terrible. I stagger so bad i seldom go in stores because I’m afraid they will think I’m on drugs or drunk. Which I guess I am drunk but it’s MS drunk.😋😃

Donnie

jsb0410 profile image
jsb0410 in reply toDoubled51

Lol that is funny yes I get it people that know me just smile and I try to as well as there is nothing to do about it

I was on a college tour with my daughter and lost my balance and fell into a concrete pole (you should have seen the disapproving looks)

I hope that you feel better and best wishes!

Doubled51 profile image
Doubled51 in reply tojsb0410

I’m sure they gave some looks.😁😀. Good luck and hope you feel better soon.

Donnie

MarkUpnorth profile image
MarkUpnorth

I'm not any any meds.....been there.....done that.....for decades. BALANCE though is getting better. I needed a cane for 5-1/2 years. Probably needed it before I started using one. But, was able to just give it up last winter! TODAY......well I did something stupid? So what makes this day different from all other days? I went atop the roof, to change the TV antenna! WOW! Who needs an amusement park with scary rides? The ladder, which keep in mind, I could walk up and down them blind folded with my arms full of whatever I was carrying up. Tall ladders? How about the 50' one along the side of to the top of a chimney stack, atop a high rise in Chicago. Yep, no problem...THEN.

Today? The 16' with at least 5' of that above the roof edge, so I would have something to hold onto getting on/off the ladder. Now that was scary! So was the walk,... no I did not crawl, even though I REALY WANTE TO.... From the peak of the second story to the chimney that the antenna was mounted. Yeah, that was, well....saw my whole life flash before me during that 6'? decent. Thank the neighbor for the help with the antenna. Just knowing someone would be there to call the ambulance when I fell off the roof was a great relief! No problem.... Made it! Mission accomplished! Good for another 20 years I hope! Or, I get cable??? Nope. I'm Frugal! With that capital F!

Sounds like the meds might be helping worsen your balance issues from everyone else who posted and is/was on the same. I never had balance issues from the DMT's. Just relapses. Lots of relapses. Accumulate enough residual from relapse after relapse, year after year, and you wind up like me. "No I'm Not Drunk, It's Just the M.S. No bar tabs necessary!" BUT....after the roof event today.....let me look and see if there is a bottle of something anywhere in the house! I need one! Don't try this at home! Stunt was performed by a professional! (One time in the past).

jsb0410 profile image
jsb0410 in reply toMarkUpnorth

Oh my! Well I’m glad that you made it down in one piece! Awesome that you are brave enough to attempt

Please be careful!!

It is scary to lose your balance while standing still on the floor I can’t imagine in that situation!

I wish you well!!

MarkUpnorth profile image
MarkUpnorth in reply tojsb0410

Thanks But I think I'll be staying firmly on the ground from now on. All that excitement wiped me out for the rest of the day.

Jazzihorsecat profile image
Jazzihorsecat

A very warm welcome jbs to our supportive (as U can see) family here. I don't do well w/ any DMT's💊💉,😰😷

I found an awesome e'book by Ann Boroch, "Healing Multiple Sclerosis", & " The Candida Cure", & have been doing the awesome, yummy diet now for over 7 months now, & am more stable, no more pains/or spacisity or "drunken/dizzy" feelings, more regular bowel m's. & just over all better, also a Dr. Amy also recommends this healing reversal, whenever our guts are clogged up & leaky w/ holes in them, then our whole bodies get outawack,, especially our precious brains do,

W/ this new diet & cleanse, it helps to heal us!👍😄😃😍 📦🎁💝

Ahh, the awesome road to real recovery ROCKS!👍👍

Again, welcome

Jazzy🌹💜

jsb0410 profile image
jsb0410 in reply toJazzihorsecat

Hi Jazzy! Thank you so much for the warm welcome. I greatly appreciate the support.

That is fantastic that you have found a diet that has made such a positive impact on your symptoms.

I have been seeing a functional Medicine doctor for about six months and she has recommended a similar diet. I am terrible though and have not stuck to it long enough to see results.

I need to have more will power and a different mindset that it will help my health.

It is great to hear that it can so greatly help symptoms

Thank you again and best wishes!

Jazzihorsecat profile image
Jazzihorsecat

👋👍yvw, I always truly recommend this so other people can experience the awesome results that many others can reverse the M.on.S.ter disease! There is help out there, & I was stubborn too, thanks to my wonderful hub/Caregiver he kept pushing me fwd. Just gotta do it, & the results are Awesome!😄👍🌺🌸💐🌼🌈 Many Blessings & Prayers you just try it! You'll thank me more later!👍💐lol!😀xxxooo Jazzy🌹💜

jsb0410 profile image
jsb0410 in reply toJazzihorsecat

That is excellent that you have such great support!! My husband is fantastic too he has experimented with every possible gluten free pasta for me!! (Even though he hates them lol)

It is great when your partner is so supportive

I am going to buy that book and I am going to give it a real try

Thank you so much and I wish you the best!

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