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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jsb0410
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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
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.
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.
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.
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.
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.😋😃
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).
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!👍😄😃😍 📦🎁💝
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
👋👍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🌹💜
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
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