Frustrated: I want off this MS ride... - My MSAA Community

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Frustrated

Juliew19673
Juliew19673

I want off this MS ride! Everytime I think I have this figured out, I wake up and it's worse than the day before! Currently what is causing me the most issues is the unrelenting neurological problems - my ability to think, make good decisions that I can stick with. It's SO frustrating! 9 months into this disease and I would have thought I'd be better, but not. I'm doing everything I am supposed to do, take the meds, get the sleep, eat well, but nothing seems to be getting better. Any insight would be appreciated-thanks.

31 Replies
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Sounds familiar! When I compare myself to everyone else, it seems I have extended “recovery” periods after a relapse and there’s never a full recovery from new symptoms. It takes time and patience to learn my way around the new normal. It’s not easy to do when I can’t think straight and don’t have the energy to do basic things. My expectations of my new body are much lower than they use to be. I focus on what I have for the day and we always survive, but some days we rock and it’s really awesome!

It may be more helpful to you if you mention a specific issue that you have difficulty with and wonder how other people here deal with it.

Juliew19673
Juliew19673
in reply to kdali

Thanks kdali. It's the roller coaster of having a few, good days physically, then I'm just a wreck mentally. On the good days, if they stretch out for a week, then I start to trust that - that will last - then wake up and BAM, it's all gone and I'm back to the beginning. I learned early on to always say NO to everyone asking for a favor, but thought I would eventually get better but - NO.

greaterexp
greaterexpCommunityAmbassador
in reply to Juliew19673

It is very frustrating that we never really have a typical disease course, like most other diseases. Things can change at the drop of a hat for the worse or for better, and we never know what tomorrow will be like. I'm learning to accept that as the new normal and just try to be grateful for every good moment, hour, day. My expectations have slowly changed, and I think that helps keep me more contented somehow. But it's been a long process. You are wise to not automatically agree to every demand asked of you, but we sometimes have a harder time training others. I hope you can feel a bit more peace.

Julie, I'm 13 years in and I remember feeling the same frustration. It took me a good 2 years of trying different med combinations for things to level off. It may have been because my first exacerbation that led me to the ER and a diagnosis was a doozy. For me, the bigger the exacerbation, the longer it takes to simmer down to a new normal. You are on the right track saying no! Give yourself since time and try not to be too hard on yourself.

Juliew19673
Juliew19673
in reply to Iona60

Thanks Iona60, I expected more from my Neurologist than I think he can do. I think this disease confounds neurologist and I thought that it would be better understood, and more importantly, better explained to me. He is supposedly the "MS Whisperer" in Los Angeles, but I do not want a whisperer, I want someone who will SCREAM, as that is how I feel dealing with day to day simple tasks. My #1 issue is mental, not physical so much, any longer. So I guess I shouldn't be so ungrateful.

kycmary
kycmary
in reply to Juliew19673

Juliew I feel for you I am almost 25 yrs. since my diagnoses I am stable right now but as you said "don't know what tomorrow brings" that is the way of MS do you have family around or are you on your own?

Juliew19673
Juliew19673
in reply to kycmary

Thanks kycmary. It's just me and for the most part, I am glad that I do not have to be responsible to or for, anyone else. But it would be nice to have someone here to take my trash out...

I really wish my Dr's had been clearer on what to expect. I'm begining to think they are as clueless as I am.

kycmary
kycmary
in reply to Juliew19673

They are darlin, MS is as big of a mystery to the DR.s as it is to us who have it. We each have MS but there are no 2 that are alike. We have similar type problems but they are treated differently. Some meds work for some & not for others & it is unknown why. It is still unknown how or why we get MS. Some times we who have MS know more about it than the Drs do it's crazy ?!?!?

got that right,our dr's have alittle more knowledge than us,but I do think at times they are winging it.It's like if it makes you feel better keep doing it,if it doesn't stop and I am paying him how much???For the most part they are helpful,it's just this insane disease

They have the prescription pad, so they do have that in their favor...

Hidden
Hidden
in reply to Juliew19673

Hi Julie - I've been on Provigil and then Ritalin at different times over the years. They helped tremendously with energy, but also with mental clarity which makes sense since Ritalin is what they give to kids with ADD. Maybe ask your neurologist if you could try something. Best wishes. The ride does get frustrating.

Juliew19673
Juliew19673
in reply to Hidden

Hi Kerryokie, yes I take Provigil and have since the beginning (May 2018) it was suggested as the "Energy Pill" and I call BS on that, but I'm not about to find out if I'm wrong or right amd stop ir. My Neuro suggested I start taking it twice a day, not sure about that. I will ask about Ritalin as something to clear away the fog, would be a godsend. Thanks!

Julie, i totally understand , i have been in this dx since May of 2018, & it is daily fight, we all sometimes want off this weirdo & wackty MS ride at some point or another!😀💗Don't worry, with better diet & a good candida overgrowth cleasnse always helps out. 👍Love Ya!---Jazzy🌹💜

I am going to now research this lovely candida (new to me) and see if I can make things better.. Thanks jazinco!

your very welcome😻 If ya go on kindle ebook, u can get Ann Boroch's book "Healing Multiple Scerosis", all about it, very good read & info. & awesome recipes too!👍💐💗Love ya dear sis!💗❤😀---Jazzy🌹💜

I have days that are more of a physical pain in my a** and days that I wake up and feel that my head is so confused, not processing things like I should. And instead of words coming out of my mouth that I'm thinking of saying, other words come out. Then I have days that I feel and think great. I just take it day by day. This disease is confusing. I know my first year from my diagnosis was h*ll. I tried and tried to understand this disease I have. I finally learned (or try to atleast) to just go with the flow, day by day. It does help that I have support from my family, friends, furbabies and this online family I made on this MS community. ❤ I hope things get better for you. God Bless. ❤🌷

hi i dont have ms but my mom has. i really really understand you.but dont give up fighting is more important.my mom gave up and not in a good stuation now.with apologise dont compare today with the past i saw its only get depression.compare with future say i m getting better if not im trying not to getting worse

That sounds like a good idea to combat depression which we could all use. Thank you for that and I really hope your mum will see some improvement soon. I can understand that she has given up. The fatigue and all the physical challenges can be very draining. Thank goodness she has you to help her. Good luck in the future and may your mum get some better health outcomes soon! ☺

i also wish you more healtier days and less.depression.she is going to start ocrevus may be it helps.if she wants also🙂

Oh that’s great your Mom is going on Ocrevus. It’s been helpful for many people. It may really help give her more stamina daily. I noticed that myself when I took it, but had to get off it recently for another reason. It’s a good Tx. Hope your Mom feels better too.

Wow, how wonderful you are! And your outside insight is a voice that is needed here. It must be frustrating from that side, and wish the best for you and Mom.

I agree with GO WITH THE FLOW! Enjoy the good days, get everything you can out of them! On the others, do what you need to do to take care of you. I am alone, too, and I have lived with this MS mess since I was diagnosed in 1982...I , too went through denial, depression, defeat, hope, joy, over and over again. Finally, I had to accept that I do have a strange, somewhat mysterious disease called

MS. First it was RRMS, now it is SPMS. I can't ignore it anymore, no one can, it is obvious to all. But I can live with it, and I DO! And I WILL, for as long as God leaves me on this earth. Educate yourself,

the people you work with, your Doctors, your friends. Do what you want to do, when you can do it. Live your BEST life, whatever that is to you. Be well, be happy, and know that we understand and we love you.

Thank you ALL! Its wonderful when I have a BAD day to be able to come here and get real, practical advice from those who know. Thank you - thank you!

Now for a "Mea Culpa" I think yesterday's extreme depression/frustration was because of the IV steroids I took last week. It was great at the time, but the coming off of them is not something I like.

I think going forward I will only ask for that in an extreme situation. Being a Newbie has got to be so irritating to those of you that have MS figured out, but those of us that don't - we/I appreciate you all so much!

Hidden
Hidden

Juliew19673

Been there, seen it, done that.

I can tell you this much:

Scientific research on its cause and cure is rapidly going on.

We're waiting for a breakthrough.

Till then, try to enjoy the drama!

Hi-yes, steroids can cause certain emotions to intensify and be all over the place. It’s happened to me every time during a relapse when I get solumedrol drip for 3-5 days and/or prednisone tabs afterwards. Acthar gel injections don’t affect me as much. My Neuro knows now to order Acthar gel when a relapse starts. I get slightly irritated on Acthar, but nothing like the drip.

Thanks Nicoly3467! I had the IV twice before and the 1st time it was like the magic bullet (when 1st DXED) that made me feel SO wonderful; 2nd time it was ok, then this last time not so great. I will only pull it out for an emergency situation moving forward.

I love this support group. People have been very helpful to me.

I learned the more times-over the years I was placed on solumedrol drip-the worse my emotions were (irritability and some depression) if

re-occurring relapses were too close together-usually I get 2/year. Two years ago, I didn’t have a relapse for about 11 months and was so proud of it-that was my longest time without one.

Anyway, thanks for sharing.

Hope you feel much better!

Nikki

Thanks Nicoly3467, yes this site saves my sanity! Thanks for your help!

Juliet, I don’t think any of us has this MS thing figured out. We just do the best we can every day with what we wake up with. I believe that whatever God takes me to he will take me through. You are right in saying no, and don’t feel guilty. You only get so much energy every day, so use it for whatever is best for you. Just remember, you are more than your MS. I will keep you in my prayers

The cognitive fog will clear up. You are getting better more slowly than anyone would want and it is so slow that it is difficult to notice. When neuroplasticity kicks in, it takes time. The brain is the coolest organ we have and it just takes more time to recover. It is that way for a lot of us.

Keep at it. Give yourself a break. We are in it together.

Juliew19673
Juliew19673
in reply to quegh

I never thought about that; my legs and back are 80% back from where they were prior to DX and DMTs. My brain is just about 30% better. That is something for me to look into - the "Why is it slower in its recovery". Thanks!

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