Symptom roller coaster: I wonder if you... - My MSAA Community

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Symptom roller coaster

greaterexp
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86 Replies

I wonder if you all would mind sharing about the nature of your symptoms. Mine are a real roller coaster. One day, they seem mild, and I feel like I have a handle on things. The next day, I’m looking at mobility scooters online.

Do your symptoms vary quite a bit, or do they stay pretty stable? If you answer, would you mind letting us know what form of MS you have? (PPMS, RRMS, SPMS, etc.)

Thank you for taking the time to share your experiences.

86 Replies
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CynthiaS

Hi Erin! RRMS is my dx. I lately have been sleeping a lot and sleeping in. Weird for me; usually up by 4-5am and today up at 7:25am. Suffer usually from malise

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greaterexp
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in reply to CynthiaS

I hope you plan to alert your neurologist if this continues, but I hope it's temporary.

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Peruzzot

I have RRMS. I suffer from the fatigue some days are worse than others. I don't recall being awake at all on Sunday and slept most of yesterday too. All day today I've switched between feeling like I'm going to pass out from exhaustion and my head just spinning. Some days I think I'm thinking clearly but then realize that's only an illusion or maybe just wishful thinking. I've also had a lot of trouble talking. Sometimes it's just a matter of finding the words I'm looking for and sometimes it's getting enough air or of my lungs to make any sound come out of my mouth. Just writing these posts sometimes is hard. I have to re read what I post to catch all the errors and still don't always catch them all. Most of my issues are cognitive physically I just move slow...people used to have a hard time keeping up with my normal walking pace. Now I have trouble keeping up with most people. MS bites.

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greaterexp
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in reply to Peruzzot

The cognitive issues trouble me most, at least at times probably because they make me worry a bit about the future. I'm grateful they aren't like they were during the relapse, but searching for words, substituting words, and forgetting things has a pretty big impact some days.

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twooldcrows

most of the time pretty much the same ...but of course if i do too much then i am pretty tired more than usual...other wise pretty much the same...i have rrms..have had since 2004 ..

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greaterexp
greaterexpCommunityAmbassador
in reply to twooldcrows

That's good to have things a little more predictable, but the issues are still difficult, aren't they?

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erash

Roller coaster !!! Idk if spms or ppms... been told both

When I spoke with my wise MS PT about and was trying to figure out why good vs bad days (like did I eat the wrong thing, stress, slept badly, didn’t stretch enough...). She said, don’t try to rationalize why. That is MS and you may never be able to determine the causes. Just do the best you can and accept that like everyone else, some days will be good and some days won’t be so good.

So my intent is acceptance and self kindness...but it’s hard not to measure the moments and days and wonder if a bad day portends continued decline.

Fear 😬

But I’m getting better at the self kindness 🤗

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greaterexp
greaterexpCommunityAmbassador
in reply to erash

Yes! I used to look for reasons why I would suddenly have either a good day or a bad day, but realize I have no explanations for either. Obviously, some things will surely make symptoms worse, but in general, I just never know. I avoid making many promises, since I never know if I'll be able to fulfill that promise. And I sure understand that fear of decline, especially when symptoms are worse.

Your PT must have a lot of experience with MS patients. Hurrah!

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goatgal
goatgal
in reply to erash

This is wise counsel to take to heart. Fear is a debilitating, unproductive emotion.

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kdali

RRMS.

My vision waxes and wanes, as I have ON damage in both eyes, but the central vision loss in one eye is always there and I get blinded easily by bright lights when it’s dark. When the MS 💩 hits the fan, eye pain returns and I start seeing double, which usually needs and hour of rest. If not, which has only happened once in the last year, I need to wear an eye patch.

My legs are fun times since my last relapse. Use to, they would go numb around noon. Now I never know, and the feet could be frozen cold and painful, or I could feel numb from the hips and down the back of my legs. Going up the stairs sometimes is slow and I am winded halfway up like someone who has heart failure 🙄 It hurts to dance. At night, they may do some dancing of their own and it’s not restless legs, but some other weird nonsense that wakes me up at night.

Word searching is fun times, and usually I play that game in the evening when tired. I use to have to nap at 4pm just to be able to participate in evening family activity. Sometimes heat intolerance is so overwhelming that drying my hair requires a nap afterwards, it’s infuriating.

There’s a whole bag of fun stuff that isn’t some easily discernible physical malady. Fatigue, confusion, and brain fog all influence mood, in addition to being giant hurdles themselves sometimes. Other times, I wake clear and energetic like a normal person and can clean the house or leave the house and go do something fun, and sometimes that ride crashes and burns in the afternoon. All rules and expectations about the MS I normally deal with goes out the window when I get a cold. It’s like symptom roulette/MS happy hour.

I’m probably forgetting a few things, but I’m always on the symptoms rollercoaster.

The legs is what I have to deal with the most now when my diet is on point.

I’ve had to deal with all of it at the same time during pregnancy, 🤨🥊 and I felt like a prisoner for about 4 months of it.

Still waiting on that pregnancy makes MS better 😂 If the research studies on estrogen ever get done and they make a pregnancy like pill for MS, THEY CAN KEEP IT! ⚰️

It is better now. My legs are numb this am and I’m moving slow, but the gift of the third trimester is waking up with ketones every morning now and I can think at least. 👏🤰 It’s fascinating actually.

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greaterexp
greaterexpCommunityAmbassador
in reply to kdali

Thanks for explaining your situation. It sounds like the roller coaster, for sure. I try to tell myself and others that if it's a bad day, tomorrow will probably be better.

I'm so thrilled for you to be in the home stretch, and you'll have that little blessing in your arms soon. I think we're all like expectant grandparents around here.

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kdali
kdali
in reply to greaterexp

Yes, for sure! I just need to sleep and tomorrow will probably be better...but if not, sometimes that lets me know I’ve caught a cold, etc.

Whew, me too! She’s very busy in there 🤣🥰 I’m considering having a vanity ultrasound soon so I can see her face. My MD said yesterday that there would be no more looks at her in the office. I kinda want to wait until the fam is here so they can go too, but thanksgiving is a loooong time to wait 😞

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kdali
kdali
in reply to greaterexp

I try to share symptom details because I’ve read that I’m weird. That ON usually happens in one eye, and lesions usually hinder one side of the body, that tinnitus isn’t a thing, that MS isn’t painful but ON is super painful! (Nope, it’s not like a toothache even). I’ve had Lhermitte’s on the back half of my body, not the front, and been able to hear it when I put my chin to my chest! Now I think that’s strange, and I don’t want anyone to not seek a second opinion and stay misdiagnosed like me, just because their weird is too weird to be MS. (I didn’t report that I was able to hear it, I knew they would send me to psych 🤣)

I’m here to represent the ones that are outside the RRMS box 😬

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greaterexp
greaterexpCommunityAmbassador
in reply to kdali

I think few of us fit into an MS box completely. I'm so glad you share your weirdness. I've wondered about my intermittent face pain that isn't like what most people describe as trigeminal neuralgia. Who knows?

Get some rest and feel better, dear.

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kdali
kdali
in reply to greaterexp

Exactly! Sometimes it’s a matter of treating something weird with a guess, and if it goes away, well it was probably that after all. 🤷‍♀️

Ty!

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Kenu

I always have more problems in the fall and the spring with rapid weather changes in barometer, humidity and heat to cold etc. Messes with my balance, dizziness, leg pain, and fatigue 🤬. It has been effecting me lately and weather is bouncing around, today 78 and tomorrow 56, crazy 😜. 👍🙏😉🐾🐾 Ken

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greaterexp
greaterexpCommunityAmbassador
in reply to Kenu

We sure do get plenty of ups and downs in weather in spring and fall. Though I love and enjoy them both, I've found the same problem to be true for me, too. I'm not ready to move to some place with more constant weather patterns, however. If I moved anywhere, it would be back to Illinois, and that's way worse than Oregon!

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Cutefreckles72

I have PPMS and it gets harder and harder to walk, to balance on my left leg, toes tingling and deal with the pain from my right leg every day. I had my last Ocrevus infusion yesterday. My ankles were swollen the day before the infusion but afterwards my ankles went down. I was surprised. Its a real roller coaster ride everyday.

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greaterexp
greaterexpCommunityAmbassador
in reply to Cutefreckles72

I sure hope the Ocrevus helps with reducing your symptoms. That’s a pretty dramatic change in the swelling right after the infusion.

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Cutefreckles72

yes, I agree a dramatic change and with no side effects from Ocrevus. That surprised me as well. I thought I would at least have one side effect but I haven't. I am ready for my next infusion April 2020.

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Tinesmumm

I am so glad to hear your results from Ocrevus. I am in the process of preparing for my first infusion, and have not been on a DMT for years (not since Copaxone and then IV Steroids). I continue to look for more info on this treatment so am grateful for all info I find, especially 1st hand experience! Thank you!

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Cutefreckles72

Good luck with Ocrevus. We all have different bodies. After two infusions, I think what also helped with the infusions, I wear support stockings everyday to help with the swollen in my ankles and legs.

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greaterexp
greaterexpCommunityAmbassador
in reply to Tinesmumm

If you go on Facebook at all, there are groups there which focus on Ocrevus, giving you more opportunities to chat with others who are using it. One of the groups is moderated by one of our members here.

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jimeka

I have PPMS. My main issues are balance, tiredness, frustration with the inability to do what I used to be able to do. As for pain, I get it in my teeth but then it seems to burn itself out, same with the pain behind my eye and ear on my left side. Then there is the spasticity in my right leg, involuntary leg movements, and numbness in my right arm, where you just want to shake it all the time, really the list is endless. Blessings Jimeka 😊

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greaterexp
greaterexpCommunityAmbassador
in reply to jimeka

I'm sure your knee issues don't help things.

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mm1527mm

Rrms. It depends sometimes a lot of fatigue such as in the heat. Occasional facial numbness or pins and needles in legs, throat tightness, weakness in hands or legs but then other days i may not even notice i have rrms.

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greaterexp
greaterexpCommunityAmbassador
in reply to mm1527mm

We're always so grateful for those moments, if and when they come, of feeling "normal," aren't we?

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mm1527mm
mm1527mm
in reply to greaterexp

I agree, this diagnosis really makes you appreciate the little things especially at times when the “normal” days are not so frequent

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carolek572

Hello greaterexp I was diagnosed with PPms in 2006. I have noticed that my energy levels are not what they used to be. The ToDo list hardly ever changes these days. So, to answer your question, my roller coaster ride is seriously doing a long exaggerated nose dive and I cannot see where I get off! :-D

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CraigS

Much like Carole572, I also have PPMS and the ride can be slow or a quick drop. Right now, I’m on the slow run down hill. I’m getting better about accepting my fate and I’m spending 90% of my time in my wheelchair. It actually helped me stop fooling myself about getting better. Of course, a trip to the shrink was also very beneficial.

Best of luck to all of us, I love reading all the posts (good or bad).

I don’t always respond, but I’m always here

C

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greaterexp
greaterexpCommunityAmbassador
in reply to CraigS

I’m glad you’re here, and am always glad when you can chime in. Thanks for responding to my question.

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jennie62

PRMS seems to be getting worse. Used to only have issues on the right side, but now my left leg is harder to stand/walk on. Lately my walking and balance stinks! Today I was awake at 3 am, but mainly I sleep for hours. Between the chronic migraines and Trigeminal Neuralgia all I wanted to do was die because of the pain they caused...but I have been medicated with Botox injections quarterly for the migraines and take twice daily with Oxtellar for the TN for a few years now...as long as I remember to take my meds I think I'll be all right, -today my memory is the sucks!- I forgot to take my morning meds until an hour ago.

A few times I've looked online for a electric wheelchair, but the cost is astronomical! My daughter and son-in-law always make sure to have their wheelchair for me whenever we go shopping and boy does it help! Who knew the stores I used to run through years ago would suddenly seem huge!

To think I used to love Roller Coasters, now all I want to do is end all the pains for everyone!

Jennie62

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greaterexp
greaterexpCommunityAmbassador
in reply to jennie62

Good family makes a huge difference, and yours sound wonderful.

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pamgarner
pamgarner
in reply to jennie62

I found a transport chair (4 small wheels).you do need to have some push you/it folds down and only weighs 15 pound!now I can walk behind it and push it like a rollator or shopping cart.I found it on ebay was $199.00 and the name was U B WELL I believe.I feel your frustration

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MaryAZ
MaryAZ
in reply to jennie62

Have you checked Offer Up for your wheel chair needs? I sold my house and moved in with my daughter as I was struggling on my own. I was able to get rid of so much stuff. Yes, I definitely took a loss but my loss was someone else’s gain. I’ve seen many types of wheelchairs and scooters for sale at bargain prices. Also, check with MSAA and see if they have any resources. Good luck!

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jennie62
jennie62
in reply to MaryAZ

Thank you for the wonderful advise! It is very hard to leave your belongings and a house of your own behind. I did the same five years ago when I moved in with my parents. I love your saying that " your loss is someone else's gain". The only things I wanted were my paintings and sketch books because I can no longer do either, but happily between your thinking and my daughter's words of advise " you will always have them in a memory" I have been able to move on and remember my loss is in fact someone else's gain and when I need them I have the memories!

Thank you MaryAZ, you have been a great help.

Jennie

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leapsnbounds

Hello, Thank you for doing this. I feel that the more we talk we are able to help each other and perhaps find a cure. I have RRMS. I am sensitive to extreme temperatures whether hot or cold, fatigue, walking is more of a challenge now as I am able to go only short distances and I am pooped, but I am blessed that I can walk, I have a cane that I use more often to walk, if the ground is not level or if there is a crack in the sidewalk I fall and pray that my cane does not hit me, I am unable to walk a straight line, if music or chatter is happening at the same time that I am thinking it is a challenge to think, anything that I do I have a write a list of tasks to be sure I am able to complete the tasks, I have numbness in both feet and numbness in 2 fingers however I have not lost feeling and I am sure there is more but I may be forgetting something. Thank you! :-)

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greaterexp
greaterexpCommunityAmbassador
in reply to leapsnbounds

Thanks for sharing. Though I’m sad to read many of the responses, I guess I feel less alone on my roller coaster when I know there are others who understand very well.

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goatgal

You describe well what I see as a long slow decline in my ability. Just two years ago, I was able to walk close to 2 miles every morning. Now, anything of distance is more difficult, and if it's a very warm/hot day, impossible. When I think of what has been lost, I become full of sorrow, gone is the woman I was and many of the dreams I had, of walking the pilgrims' path between France and Spain, of weekend hikes on the Blue Ridge close to home, of hiking in the eastern Sierras again.

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jennie62
jennie62
in reply to goatgal

I always dreamed of visiting many places in Europe and walking the Camino. I remember years (and years) ago driving though the Blue Ridge mountains.

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goatgal
goatgal
in reply to jennie62

I try not to focus on what MS has taken from me (it's pointless to go there), but every once in a while it surfaces until I push it away by focusing on what I can do and take pleasure in.

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greaterexp
greaterexpCommunityAmbassador
in reply to jennie62

I've often thought about all the places I would have loved to have seen. I've started thinking that I may utilize the internet for some virtual tours. I know it's not quite the same, but it's basically free, no hassles, no lines, and no MS problems to deal with!

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Cutefreckles72

Hi leapsnbounds, I agree with you about how the temperature plays a big role in MS. Last year, I didn't notice a change in my right leg. My toes just tingled. But now since it has gotten cold in the state of Georgia, I can feel the difference. My right leg is numb and tight. It is crazy. I use a cane as well and its still hard to walk.

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anaishunter

good question. My 6-month neuro visit is in two weeks and I was thinking about what to tell the doctor.

- I'm lucky that most of my symptoms are minimal. (I tend to think that they've not altered by life yet but as I've improved with treatment I now know how much damage MS has done).

- every week is different.

- Fatigue is what fluctuates the most. Some weekends I must take a nap on Sat and Sun. Others I'm a ball of energy.

- Leg weakness shows more towards the end of the work week after 3-4 days of sitting at a desk

- Brain fog is gone, gone, gone...

- Bladder control (more precisely lack of): I can't quite figure out what's the pattern for this one

- RRMS or PPMS: neuro did not answered this one yet as the 1 year after DX. I think it's RRMS

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greaterexp
greaterexpCommunityAmbassador
in reply to anaishunter

Yes, the bladder thing perplexes me. I’ve never had flat out total loss of control, but urge incontinence comes and goes whether I do Kegels or not.

To what do you attribute the improvement in cognitive fog?

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anaishunter

DMT. It quite clear to me that prior to DX, my body was in a high state of inflammation - acne on my face, itchiness, pain, fatigue... not sure if brain fog is due to inflammation.

But all of it has stopped since I'm on Ocrevus + no sugar/dairy/meat diet + Yoga/exercise.

Bladder control issue is always in the evening so probably has to do with how tired I am.

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jackiesj

rrms:every day is waking up to who knows whatI feel blessed with any part of good in any day and constantly say..this too shall pass.Is there a bipolar MS?That is mostly why I have been off screen.I love this group so very much.There are great things to learn and one is we are never alone..when we are alone.I have also found for me, doctors do not work together on the Ms issue unless you are really fortunate.My shrink needs a shrink sometimes..I guess we can all be lessons for others who in a professional field may not get it but...im a bit tired of being the lesson.My best to all...Putn this out there...VOTE, my best to all

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pamgarner
pamgarner
in reply to jackiesj

I hear you, my neuro said "we all need talk therapy including himself" at least he was honest,alittle scary though,huh?

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greaterexp
greaterexpCommunityAmbassador
in reply to jackiesj

You're my hero, Jackie, with your attitude and your always kind comments.

I know one of the biggest frustrations for many people is that we often have a team of doctors to deal with different aspects of MS, but they don't always work as a team.

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jackiesj
jackiesj
in reply to greaterexp

This doctor wanted to do electroshock therapy......I am still shocked.MS misunderstood even in medical community....sheesh

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CraigS
CraigS
in reply to jackiesj

Seriously! What is this 1920 treatment. Good lord.

Run Jackie, run!

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goatgal

Hi Erin, In my experience, MS is a roller coaster without many straight stretches. PT ended in September, and as soon as the weekly foot therapy stopped, my feet began to stiffen up again. For some reason, I thought the flexibility they had gained would remain if I continued my exercises and increased my outdoor activity (i.e. walking more as I worked outdoors). Now every morning when I rise, they are like wooden blocks. This throws off my balance and my first movements lurch me against door frames and objects as I go to the door to let the dogs out. I am constantly aware of how they feel, ranging from uncomfortable, to achy, hot, and stabbing fleeting pains. This seems to be more or less permanent, but I don't know if it qualifies as a relapse. I've been spasm/cramp free at night for the last year, but just the last two weeks, leg spasms shock me awake, linger for long enough that my rest is disturbed. I was diagnosed with RR, but there have never been any relapses or new lesions in the 9 years since. So, after a long smooth stretch, I seem to be traveling a rough road at the moment.

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greaterexp
greaterexpCommunityAmbassador
in reply to goatgal

I'm sorry the stiffness has returned. Is there any way to get more PT? Your lifestyle is pretty demanding, so these restrictions must be a real challenge. I wonder if your doctor could help with the night spasms so you rest better and maybe wake up with less stiffness.

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Tinesmumm

My symptoms got up and down; I was DX with RRMS 10 + years ago, but only recently found out I have a new brain lesion (right temporal lobe). It is apparently inflamed but I also know the more I worry about my symptoms, (mostly cognitive), the worse they seem. I definitely have more cognitive issues recently, and also fatigue quite easily.

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greaterexp
greaterexpCommunityAmbassador
in reply to Tinesmumm

Sounds like the roller coaster. I'm sorry about the new lesion. Any changes in your DMT?

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janetb1968

Hi I’m RRMS but I’m not sure if I’m sliding into SPMS! I’m still on Tysabri which is due tomorrow and see my neurologist on the 23rd October. My symptoms are balance which is not good at times, walk very slowly and an overactive bladder which is being sorted out! Oh the joys of MS! Hope u are well xxx

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greaterexp
greaterexpCommunityAmbassador
in reply to janetb1968

That mysterious slide in to SPMS! My neurologist is questioning that possibility for me, too. Do your symptoms improve at all after your Tysabri doses?

Thank you. I get to see a specialist in a few days and hope he has good insight into treatment options.

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janetb1968

Thanks honey just got to infusion centre for the Tysabri xxxx

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pamgarner

spms since 2013,I found the miracle drug for me,cymbalta,it has eliminated the numbness and burning for me,it also has a small anti depressant that has turned the tears completly off ! but I am still very weak and have a hard time walking.I have the transport chair,many canes and just got a rollator,nothing if I can help it,is going to keep me from going.I am still driving,thank goodness.I have to up my exercise to combat my weakness.I heard the other day( ms fatigue is not liked tired, we know that,but when you say you are tired it is hard to put 1 foot in front of the other,but with ms fatigue we can't put 1 foot in front of the other)amen. I can't walk now 2 car lengths without a cane.but i am blessed,I am still walking,I don't have it in my arms or eyes,and still going just takes me alot longer.we all are the same but different!

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greaterexp
greaterexpCommunityAmbassador
in reply to pamgarner

What a marvelous attitude you have! It's terrific that you and your doctor figured out how to treat the numbness and burning, as well as depression.

I've been learning that lesson about working around limitations and adapting. I've also learned that the world doesn't stop revolving if I say "no" to demands on my energy at times.

I like your description of fatigue in MS. It's so hard for other people to understand when they don't have MS.

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leking1

Good Morning, greaterexp! I was dx in 1982 ( I think) with RRMS. but have had SPMS for the past 10-14 years. Symptoms are progressing much more quickly than before, and I still have new ones pop up every now and then. I started having seizures about 5 years ago, which are now under control with Topiramate. Legs are very weak, sometimes numb, often very painful. I drop about a third of the things I pick up, I can fall going up steps or across a bare, flat floor, as well as going down steps, and some days I will remember things I knew or read before I even started school, on other days, I will forget what you just told me! I live with both bladder and bowel issues, fatigue is a constant companion, and I do take a nap on most afternoons!

I live alone, walk with a cane, or 2, have a dog and my kitties, and I think MS is a funny disease...I can laugh about it, because that is my way of coping with it...and I never know what part of my 4'11", 101 pound body is going to spasm, seize up, wiggle, shake

or go numb! As one Dr. told me many, many years ago, it could be worse, you could have something that would kill you!

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greaterexp
greaterexpCommunityAmbassador
in reply to leking1

It sounds as though even in SPMS, there can still be a bit of a roller coaster with symptoms. You must really appreciate those days when your cognition works better!

I appreciate your laughter at MS. I think that's one of the best weapons in my arsenal. So far, I can get others to laugh with me, and it really does lessen the stress.

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leking1
leking1
in reply to greaterexp

It does help! Have a wonderful day! Linda

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MarkUpnorth

Try to describe your M.S. sympoms journey?... In a nutshell. Yeah, me? LOL! You haven't seen the size of the nut I'm gnawing on now! Only ever diagnosed with relapsing remitting, but the Neuro's hinted at possibly other from time to time. Now I'm in a very long remission, going on 6 or more years, and my current long term neuro thinks I may be over it? He told me he is aware of others! But...thinking back, my symptoms kind of played like a..... horrific symphony? Yes, the first years were the normal waves created by the first few notes. Pluck a string, wait a bit, draw a bow,... At first it always came slowly and unexpected, ramping up in intensity, till it peaked, then just as it grew, it dissipated in reverse, forever slowing till eventually it was gone? Kept thinking was it over? Nearly everything lasted from a month to two months. But with time, multiple things started going on concurrently, all with slightly different starts and stops. Eventually, it was a a full symphony, but not in harmony, rather complete chaos. Okay, maybe more like a war? Casualties were those symptoms that lingered in part thereafter forever. Always at a lesser level than at the climax. Wounded, not dead. Never really completely lost anything I had before. So now, all the casualties..., Meaning: vision, hearing, walking, stamina, just staying awake, thinking....the 1001+ things, are all still there. It's just that they are all wounded, all crawling away from the battle.

But!!! The great news is the battle appears over, and the smoke has cleared!?! And, It's a sunny day to try to keep on recovering from all those wounds!!!

Please anyone who reads this. I know It's really, really hard, but if nothing else, help yourself by what you put in you mouth. It really matters! I attribute that to winning my battle, and am hoping it will help to heal at least some of the wounds.

Yes I still live with it, big time. But I've had decades of full blow battle. But you have to stay positive, no matter how bad the battle gets, and how badly you are wounded. Force yourself to try harder. Improvements..., even if very, very, hard and slow, are well worth it!!! You Can!

Cognative problems? Yeah look at the good points of that? You may take all day......, or days, Or longer, to figure out what you used to do in an instant. But..., if you still can, that's good! Isn't it? And look at all the bad stuff you can just easily forget now!

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greaterexp
greaterexpCommunityAmbassador
in reply to MarkUpnorth

Your analogy to a symphony fits perfectly! Some days, all the parts are playing well together, except for that one quiet offbeat instrument. Then there are other days!

Thanks for pointing out how important it is to focus more on what we can do, rather than only on what we can't.

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OKgal

RRMS. I have such a laundry list of symptoms. My top one is vertigo, which makes a daily appearance and can vary in intensity. Cog fog, spasticity in left leg, burning in the left foot, fatigue, intercostal muscle spasms, word finding, neurogenic bladder...and probably many more I can't recall. I was prescribed baclofen for the spasticity, but I didn't handle it well and stopped it after a day and a half. The bladder is under control with Trospium. I'm such a bad patient with notifying my doctor when prescribed medicines don't work. So it's all on me.

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greaterexp
greaterexpCommunityAmbassador
in reply to OKgal

You've got a lot to deal with. Have you tried anything other than Baclofen for the spasticity? I hope you can find something to help as well with that as your med for bladder issues has.

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OKgal
OKgal
in reply to greaterexp

I've only tried Baclofen and was prescribed it last July. I haven't updated my neuro I couldn't tolerate the side effects. Pilates helps to keep everything tolerable.

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Purple_Lady77

Hi greaterexp, I completely agree and shared the roller coasters experience. I have RRMS and I avoid planning too much to do in advance. My strength is quite limited now. Thanks for asking, may God bless you and Mary keep you.

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greaterexp
greaterexpCommunityAmbassador
in reply to Purple_Lady77

You, too! God takes good care of me!

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stepsforNeeC

Hi My Sis, RRMS! Currently I'm going through a roller coast of fatigue. Some days I can do 30 minutes of a moderate "work -out" routine; three days out of the week very tired. Drowsy in the afternoon, but that could also be compounded by the fact of low blood pressure and medication.

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greaterexp
greaterexpCommunityAmbassador

I'm amazed that you can do those workouts! Good for you! You're definitely an overcomer.

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Juliew19673

Mine are over the place daily. PPMS so no remittance in sight.. 1 day I'll be good and the next, I feel like I have the flu then the next day I will be exhausted, then the next my neck and back will spasm..

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greaterexp
greaterexpCommunityAmbassador
in reply to Juliew19673

I've forgotten if you take a DMT. If so, how long have you been taking one?

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Tinesmumm

Thank you! I will check that out. :)

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Tinesmumm
Tinesmumm
in reply to Tinesmumm

I’m new posting on here; I meant thank you to greaterexp; and that I will check the FB site out on Ocrevus. Thank you all for sharing your experiences. Hearing from others about first hand experience helps so much!

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falalalala

RRMS

Fatigue & a pronounced limp are the worst ones for me.

Dexterity issues as of late in my dominant hand.That one is starting to piss me off.

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greaterexp
greaterexpCommunityAmbassador
in reply to falalalala

I hope you find ways around it. You’re such a talented artist!

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hairbrain4

RRMS Mostly cognitive issues now since I have been on Ocrevus. I did have a minor relapse a couple of weeks ago with fatigue after my hospital visit with the thyroid toxicity. I used to have leg cramps all the time, but mostly at night. I had numbness on the bottom of my feet and toes and down my left arm and fingers. I had constant fatigue. I would have days that my balance was horrible and would trip over little tiny particles of matter that floated in the air & and once ended up in the ER from falling on my face in a pile of rocks. I also had dizzy spells if I looked up then look down. It would almost make me pass out. Copaxone made each day pretty constant without too many ups & downs. Techfedera gave me big ups & downs. When I was not on any DMT's while waiting on Ocrevus I was up & down daily. Each day was a new adventure. I never knew if my legs were going to cramp me up into a fetal position or if the fatigue was going knock me out cold. Now on Ocrevus for a year and almost all of the MS symptoms are gone except for the cognitive issues & a little numbing on my toes. My balance is a lot better, not perfect but at least I don't trip over those tiny particles in the air anymore. As of late, I have only fallen when that wheelbarrow knocked me down & broke my arm in June, so I'm not counting that fall due to MS. I hope this is what you were looking for.

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greaterexp
greaterexpCommunityAmbassador
in reply to hairbrain4

Thank you. Yes, it’s exactly what I was looking for.

The Ocrevus seems to be working beautifully for you!

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hairbrain4

It is, I call it my Wonder Woman juice because it has helped me so much.

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greaterexp
greaterexpCommunityAmbassador
in reply to hairbrain4

I love it! I'll remember that (maybe) if I get to start it.

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mrsmike9buffering

RRMS - Except for worse memory issues lately, I'm pretty stable. (Not mentally but...you know!)

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greaterexp
greaterexpCommunityAmbassador
in reply to mrsmike9buffering

Ha! We just have fun with some of those things! I am sorry about the memory issues.

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BeckyAnn1966

RRMS and at least you can get off of a roller coaster,

My life is completely up side down everyday.

Pain is getting worse.

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greaterexp
greaterexpCommunityAmbassador
in reply to BeckyAnn1966

I’m sorry about your pain. Life is still a roller coaster for me. 😢

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