Does anyone body feel worst off taking y... - My MSAA Community

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Does anyone body feel worst off taking your MS medication vs. before you even started?

Diva1976 profile image
20 Replies

Not to say its the meds but you wish things could be as steady as your MRI reflects in terms of your MS! I don't get how I am literally in pain everyday! My mobility sucks! I'm so stiff. I try to exercise!

My foot drop is a whole another conversation. You know how you make a fist. My foot does that when I put on my shoe. Without shoes that big toe truly has it's own mind. It now bend/folds further back at times. I really didn't think it was a such thing as it being at a different stage with foot drop too. But I guess that's part of why it's called primary progressive for me!

My son constantly straightens my left foot out when I'm sitting. He goes mommy that should hurt! How can your leg and foot go in such a awkward direction? Combination of stroke and MS just has the left side pretty unstable.

I told my doctor I want off the rollator. I need you to get me back to a different new normal I call it. I want to walk without a rollator or cane. I want to walk in a store without needing a scooter. I want to feel no pain in my legs/back and neck! I don't want to feel I'm carrying 200 additional pounds that's not truly there! He said I cannot promise you that. He said I want you to know some people are worst off than you! I sat there and said you're right!

My life has changed, but I'm still pushing through the obstacles. I keep it positive for the most part of thinking about things that make me laugh. Thinking about my accomplishments. I'm glad I was able to do a lot of things before MS truly invaded life. Of course before being diagnose you start to conclude somethings wrong. At least I did... To be normal again...Not to say I'm not, but you all know what I mean. To wear a pair of stiletto's again...Man those days are gone...I just needed to vent!!!

20 Replies
jimeka profile image

I know exactly how you feel. I know that won’t make you feel any better, but PPMS is hard to live with, but we have to smile at what we can. Anytime you want to share your self pity parties, I will join you, we can have a laugh together, Blessings Jimeka 😊

rjoneslaw profile image

I'm better being on the meds

mrsmike9 profile image
mrsmike9 in reply to rjoneslaw

Me, too.

Jesmcd2 profile image

Vent away Diva1976 🤗💕🌠

twooldcrows profile image

venting is all ways allowed for we are all going threw so many changes ...yes if doctors would of listened when we said the different things was going on with our bodies it always makes me wonder would we be any better off now ....but yes we have to laugh and enjoy what we still have our families and this wonderful beautiful world around us ...i know i can't say for others what they are going threw but ha we are here and writing to each other whether it is nice jokes or dirty ones but we are here ....hang in there for it sounds like your son wants to help and much happiness...

Diva1976 profile image
Diva1976 in reply to twooldcrows

I believe laughing is what gets me through it. Funny stories come with MS. My son cracks me up imitating me. I said boy I bet people think I'm drunk always! LOL

MarkUpnorth profile image

K, I haven't had a stroke on top of M.S., but I did go into a coma for a couple? years. Not sure how many. And not really a coma, just brain fog so bad I couldn't see the forest for the ???, oh yeah, I lived in one, those things with trees! Anyway, my file cabinet drawer full of meds, which I never got rid of, but keep for? So I can see all the S I was on? Oh, did I mention, when I finally gave it all up, per my neuros' (yes plural) directions, the DMT's, all of them went away, then I became comatose. It's a very long story, but you can research it on this site, or you can PM me for more and I will give it all to you, but, healthy, healthy eating brought me back from the dead! And yes! I feel much, much better! I'm not talking the low fat version of xyz, or healthy living pot pies, but a real if it isn't a vegetable, from the produce market, an egg, or fish/seafood, still looking like it was pulled out of the water and frozen, it probably isn't going to be eaten by me.

And yes, I used a cane to move my right side of the body at first, forcing myself to walk. But then, it was for balance only, 5-1/2 years later, I mounted it on the wall! No, I won't be climbing any mountains? But, I'm much better off all the meds. I take, let's see....nothing! Except CBD rich flower from hemp bought legally from the internet for the pain at night. Those Dxxx burning feet at night. CBD flower (no funny stuff concoctions that can kill you, vaped, does it like a candle snuffer).

The stroke thing, I don't know. My dad, now gone, thanks to my mom, also gone, had several mini-strokes doc's think. He did well, except for dementia, and his diabetes, the latter of which finally got him living in a hospital bed, in his own house, waiting for more plastic veins....?

Want the long story, I can write a book? But yes, I'm doing much, much better on no meds, than on meds. My meds are nature grown!

pamgarner profile image

vent away,we all get far as pain,my dr. put me on Cymbalta,it has taken the pins and needles away for me.I still have fatique.I did ask my GP."is it 64 years old or ms./" he replied we will never know.My neuro told me after I told him my joints hurt,not everything is ms,we still get other things!whoopeee!I hold on to everyday is different.I do use a cane or rollato butdoesn't always work.I have fallenpublic.I am stubborn,I am gonna do want I want.don't go by me!you will figure it out:)

Diva1976 profile image
Diva1976 in reply to pamgarner

Yeah you're right we have to figure it out. We're so unique in our own way. Yeah I got a message from doc talking about narrowing of L5 & S on both sides. I said great another break down of body. I suppose to get epidural shot for pain. I will see how that goes. Ginny pig for relief that's me. We have MS along with other issues contributing. We shall continue to survive it all!

twooldcrows profile image

that is what we all do is what keeps us going and no one is the same and the drugs can effect each of us differently so just try and do what you want ..of course i still advise talking to the doctors still if they don't want to talk to another till you find someone that will listen to you that is there job but some don't want to admit they don't know anything about MS yes they are still a good doctor but i found one that specialized in MS so she really knows about it...good luck for what ever you decide to do and happiness and laughing and smiling ...go for it and have fun no matter what others think....

mm1527mm profile image

Sorry to hear this. I know how you feel and have many of those days wishing to be “normal” and ms free. 🙏❤️

KrittyKat60 profile image

Please don’t feel like you have to apologize for’s what releases all that anger, its better to get it off our minds and chest than to bottle our feelings up. I too wish I could get back my life before MS and be normal again. I use humor to keep myself somewhat sane. Although I’m not taking a lot of medications right now I have tried many types over my life time before and after my diagnosis. I’ve found most physicians think a pill or medication can be prescribed and send you on your way. I tell my physicians when they want me to try this or that medication for various symptoms that I’d rather try a more natural or alternative method if possible. I just don’t believe a pill is always the answer to everything when you see a doctor because our bodies are telling us something is wrong. Instead, get to the root of the issue, prescribing medication is a bandaid that later causes another medical issue and ends up being a cycle of hell. I agree, sometimes we are better off not taking medications and felt better before taking anything.

I am thankfully still able to walk and get around but I’m also aware that can change very quickly and I don’t take the ability to get around for granted. I’m very aware of the things I assumed before MS I would always have, and now know those are gifts we were given at birth, we never miss them until they are taken away from us without permission. Which brings me to something you said your doctor told you......“I want you to know that some people are worse off than you”. DUH!!! Definitely there are others worse off but seriously why would a medical professional ever say that to anyone much less a person who is obviously not in the best of health? I would have started crying, or maybe thought of smacking something. How does one respond to a comment like that? IDK....I’ve had many doctors tell me this or that is normal when I knew it was not normal. But I have to say I think what he told you was inappropriate not to mention insensitive. I think we all can relate to the frustrations that come with MS. My wish is that one day family, friends and strangers can understand a disability comes in many different forms and to be supportive if possible. Thank you for sharing your question. It sure hit a chord inside my heart. I sincerely wish you all better days going forward, hopefully with less pain. Feel better soon. 🙏 🥰

Diva1976 profile image
Diva1976 in reply to KrittyKat60

Thank you! It's hard to grasp for some family members, people in general to understand disability until it hits them unfortunately. And i do not wish it on no one. I'm always hoping for an alternative than pills. It was just like how i was prescribed norco for pain. Well it didn't work so I stop consuming it. If it was something that truly worked in pill form with no side effects. I would say sign me up! This body seems to be different. Someone told me about peppermint essential oil. I said I will try it out. I went to get epidural injection today and doc said your legs are barely moving. I said I know...He asked how long its been like that? I said sh*t for a while. Maybe 4-5 months. And before that they moved a little better. Not to say I was skating or anything, but u know lol....

KrittyKat60 profile image
KrittyKat60 in reply to Diva1976

I hope you get to feeling better soon.

I’m going to post what I was told today after my neurologist’s office called me before I go to bed. Like really soon. LOL

carolek572 profile image

Vent away, Diva1976

I feel so much better when I get things 'off my chest' :-D

charlyneb profile image

I have had two Ocrevus infusions after failing trials with Tecifedera and Capasoin (sp). After the first infusion my symptoms and function improved significantly. In July 2019, I got a second infusion. Every symptoms that I had during my three episodes of demyelination returned; some mild but some with a vengeance. I am in a wheelchair in the community and use a walker inside my house. My next infusion is planned for January 2020 and I do not think that I am going to have it. I would be grateful if anyone else with MS has had similar experiences. The spasticity in my right leg has worsen to the point that I am going to have to get hand controls ($350.00). I am now back in OT and PT. I cannot stand to cook as long as I did before the second infusion.

My situation is rare. I took Humira for my psoriatic arthritis and it demyelinated my brain and spinal cord. After my third episode, the demyelination converted to MS. Now I have two autoimmune diseases. I agree with you about MS. It is a horrible disease and I am tired of "rising above it." Before I demyelinated I could water ski at 33 mph on a slalom ski for as long as the driver of the boat wanted to pull me. I STAYED outside and had a beautiful garden and yard. I miss my previous life not that I have not continued to be productive. I am tired of spending all my disposable income and savings on my MS and equipment to help me be independent.

I would love it if someone out there can refer me to an attorney anywhere in the nation because I cannot find anyone to represent me. I feel that Abbot should at least pay for my home modifications. I will eventually have to move as my disease progresses and I become less independent. I worked my entire life to buy a beach house. I live in a home that is third row from the Atlantic ocean and I have not walked on the beach in three years. I can look at it but I cannot get over the soft sand to the hard pack area.

That's enough complaining. Thanks for listening and I know I sound like a brat but I never thought that I would not be outside in the summer!!

Diva1976 profile image
Diva1976 in reply to charlyneb

Wow, I’m sorry to hear that things aren’t going in the right direction. But what I love is that you are still fighting for your independence. The day I went to get pain shot on the 18th. I had a melt down due to my legs when I got home. And me knowing and having someone confirm it just took me to another place. I started thinking about how I fought with the Insurance for a scooter vs. wheelchair. And that day with my speed. I said u may want to continue to try and be as independent as you want but you need a wheelchair. I wondered what did the Insurance company see that I couldn’t see 2 years ago in my medical records. They kept saying your disability is progressing and you are going to need a wheelchair. I said NO numerous times. On the 18th I said I hate to admit they’re right! I just finished my 10 min. on bike. I’m hoping it make a difference eventually. Now after reading what you wrote Charlyneb I may need to re-evaluate my Ocrevus.

leapsnbounds profile image

I miss wearing heels too. I still have some that I did not get a lot of wear out of. Hang in there.

Diva1976 profile image
Diva1976 in reply to leapsnbounds

I finally realized it was a done deal with heels. Tons of new like you. I definitely will...Ty

pamgarner profile image

i hear you there are good and bad days,i used to were those very high heals for 20 or more years. i would love to do that again they make your legs look so pretty i guess at my age 66 just foolish😋

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