MRI back w New lesions

[kandykone1]

Ugh. Had MRI Friday. Nurse called today said new lesions found and I’m meeting w dr tomorrow. They won’t tell me details over the phone.

And I’m To stop taking Copaxone clearly it’s not working. So FRUSTRATING AND UPSETTING.

😠☹️☹️☹️☹️☹️☹️☹️☹️

[greaterexp]

I'm sorry to hear this, but I'm glad the MRI picked them up so you can get onto a much more effective treatment. Have you noticed new symptoms?

We'll all be hoping the next report is a good one. I hope you let us know what your new treatment will be. I know you'll choose well.

[Royjr]

Sorry to hear this. Hopefully they prescribe one that works..

[jimeka]

Sorry about your news, but hopefully you can get on a more effective DMT, let us know which one you choose, Blessings Jimeka 🤗

[kandykone1 in reply to jimeka]

I will. Thank you

[twooldcrows]

take care and stay positive for they are watching out for you ..

[kandykone1 in reply to twooldcrows]

Thank you. Needed to hear that.

[bxrmom]

I'm sorry for the news 😔 I hope your Neuro can help you find a more effective RX. Keep us updated.

Jessie

[mm1527mm]

Sorry to hear this. Hope you find a better dmt that works better for you. Blessings

[Amore55]

Hang in there sweetie! I was on Copaxonevfor quite a while. We realized it was actually hurting, not helping! New lesions are scary, but it is part of this stupid disease. Be strong and positive. Let us know. Love, Kelly

[kandykone1 in reply to Amore55]

How long?

[Amore55 in reply to kandykone1]

Close to 2 years, then Tysabri for 6. How are you doing? I know it is difficult, but try to relax and take care of yourself! Love, Kelly

[kandykone1 in reply to Amore55]

I’m freaking out. Panicked. First meds didn’t work. It’s been two years now of stupid injections and it backfired and so the fun begins 😞

[rjoneslaw]

Sorry to hear that I hope you find a med that works for you.

[pamgarner]

I was on betseron for 4 years and I got the only mri back with new lesions,dr..instantly took me off that and put ME on ocrevus.so sorry,very scary.I told my hubby he can honestly say his wife has holes in her head!hope you can find the right meds

[kandykone1 in reply to pamgarner]

Did you not have a yearly MRI while on it? I pushed for this one cause I’ve been feeling weird.

[pamgarner in reply to kandykone1]

yes I did and my dr insists on one yearly,glad to do it I want to know where I am,the betaserson was my choice.the ocrevus was dr choice,so far,so good

[kandykone1 in reply to pamgarner]

That’s good to hear.

[jorrell]

You have my sympathies. Copaxone is the one they try first since the insurance.likes them. I was on it for six months and the lesions kept growing. After that I was on Tecfidera for about seven yrs until I became allergic to it. Now I am on Ocrevus, no problems so far. Time for a new DMT

[MarkUpnorth]

I was on Copaxone,.....and Avonex, and Rebif, and....? Did a couple decades of DMT's. For me, and I was told everyone else, these drugs are not bullet proof. You have to just hope they are keeping the amount you are getting with the DMT's are less than they would be otherwise. Why else would one spend a gazillion on them? Unless you love sticking yourself with needles..... I miss that! Yeah right! There are now needle-less alternatives. Some better..., some??? I did then, putting up with all the fun stuff till after almost 2 years of non-stop flue-like symptoms at the end of my DMT days, my neuro told me to stop.

From what he could see, they were not helping me anymore anyway, and living with? an afternoon every 3 days without fever, aches, shakes.... So THEN I quit. But till then, do all you can do. It's not certain or 100%. But, keep on trying all you can do.

Also, try healthy eating. Seriously try. Eliminate all processed foods. Eliminate things you don't even know what they are, more less pronounce them. Things like the Whal's diet....is a good starting point template. You can adjust from there.

Do both! DMT's and Real Food. I I found the latter really works. Again, not a magic pill, but like the DMT's, that's what one's gotta do! I'm doing much better than many I know. It's not easy, especially starting, but well worth it.

Don't give up, unless you're okay with the worst?

[kandykone1 in reply to MarkUpnorth]

The diet modification has already started. I KNOW overall it will help.

Thank you so much for your kind words. I know it's a bump in the road. It's just tough when you have a young one at home you know you need to be healthy for. I'm not giving up. Ever. I'm only two years in this game at 42...so I have to hope I make the best decisions for ME. Just like you did!

[MarkUpnorth in reply to kandykone1]

Great! Don't get discouraged. No one ever said this was going to be easy. BUT, it's something we can do!

[Fancy1959 in reply to MarkUpnorth]

It's Fancy, Mark. I hate to hear that you've given up on all your DMT. . What stage of MS. are you currently in? Are always new therapy that all four New Hope for even us old MS patients, like myself, that has secondary progressive MS. Mark in the last 8 to 10 months there have been two brand new therapies that hit the market. . I start on m Maysent as soon as I get the paperwork done and my Insurance gets it approved. . The other new therapy that has Hit the market about the same time is a therapy called. Mavenclad. Both work on secondary Progressive or relapse and remitting MS.

Don't ever let your neurologist give up on you. If that happens seek a new neurologist out. . We have to keep Pope and we have to understand that. Tomorrow is never certain and we can pray for a cure to rear its head up due to the massive amount of research currently being done. on MS. If you have trouble finding what the national MS Society calls a partner and hope close to you, which is a doctor that never gives up, call them direct. Their number is 1 800 fight MS. They will assign the case worker to your pace and they will find the closest partner and help if they know of for you to go and seek answers.. Doesn't matter how old we get we still have this monster in our body and we still need to keep it from invading new areas or making current symptoms get worse. . Remember everyone reading this post that won't we see and feel with our MS, Is like an iceberg where we see only the tip above water.. The massive amount of damage and disease activity is done under the surface. In areas we cannot see until this too late and the damage is done. . Never never never give up on your therapy. or your DMT because they are designed. to slow down that icebergs progression under the water. . Hope you are doing well Mark, and are staying on a steady course. Until we speak again. Please remember that., together we are stronger! Fancy.

[Juleigh21]

Your story sounds very familiar. Copaxone works great for many MSers. I was not one of those people. I kept having relapses on copaxone. Tysabri was great. Now I’m on ocrevus. Hopefully, they’ll find the right DMT for you🤞

[kandykone1 in reply to Juleigh21]

My Drs are leaning on me starting Tysabri or Tecfidera....I have some decisions to make in the next two weeks.

[Petunilla in reply to kandykone1]

Tysabri has been great for me.

[kandykone1 in reply to Petunilla]

SO good to hear!!

[Juleigh21]

I did tecfidera for a short time between copaxone and tysabri but I kept progressing. Tysabri was wonderful but after many doses I started reacting to it.😕 It’s very odd to react but my stupid body did. I’m hoping to like ocrevus as much as tysabri.

[kandykone1 in reply to Juleigh21]

Ugh. Reacting. Bummer. Dr talked highly about both meds.

[sashaming1]

Copaxone didn't work for me either. So, like other MSrs, switched to another DMT hoping that it would work. Went through two of them before finding the right one.

[kandykone1 in reply to sashaming1]

That's what next for me, finding the right one now.

[stepsforNeeC]

I'm sorry to hear that, try to stay positive and you and your doctor can get a new treatment plan started. I will be praying for you, and keep us updated.

Blessings

NeeC

[Fancy1959]

Please keep us informed, and know that you are in our thoughts and prayers. Finding out your current DMT is not meeting your needs will allow you to search for one that will. Ocrevus is a solid choice and will is designed to keep new lesions from appearing and keep your MRI stable. Take a deep breath and relax if you can. Stress is the worst thing you can be experiencing right now for it allows your MS to thrive and beome much much worse. Fancy.

[kandykone1 in reply to Fancy1959]

Changing meds. Tecfidera or tysabri

[mrsmike9]

Well, poo! Perhaps they'll put you on something that doesn't require a needle!!! I hope this is a blessing in disguise.