Deciding on treatment...

[Debriley]

I was diagnosed with RRMS in 11/17 and to make doubly sure again in 12/17. I can say with certainty that I've had this disease for at least for years pre-diagnosis. I'm having a difficult time accepting it. In the past few years MS has taken some really important things away from me and it has slowed me down. I always blamed it on whatever was happening at the time and thought I just needed to get over one more hump and things would be fine again. Now I know it's always been MS. I only have lesions on my brain per my MRI 5 months ago. More than 10. I don't know if that's a lot? Anyway, I'm extremely frustrated and I haven't been excited about any of the treatments my MS Specialist has offered. I read the patient reviews and the manufacturer info. I would prefer something low maintenance and results like Ocrevus or Rituxan. I feel like I never fully get over my relapses - I have a lot of anxiety so I'm sure that doesn't help. I would love to hear your thoughts and advice on treatment. My next MRI is end of April. Oh! I did try Glatopa and had to stop because it was just awful with side effects for me. I just want to feel well enough to have my active lifestyle back and become more reliable again.

[ssdw1958]

Oh I know how you feel I was diagnosed in 2004 but I know I have had something years before that but I had a doctor that wouldn’t listen until I diagnosed my self. I am taking Ampara, oxibutenin, I know after talking it for so long I should know how to spell it oh well I am taking Ocrevus. One thing I have noticed the last 3 weeks my right han is not as numb as usual. I have been stuck in my house for awhile 1 my husband has the car and he has been working 7 days a week with these Nor’Easters we have been having. 2 more than anything this weather we have been have fun is crazy. I know I have been told stress doesn’t help MS but you know that thing called life well these no way to get away from it. If you know what I mean.

Try to take it easy

[greaterexp]

Welcome to the group. I always hate to hear about anyone finding out they have MS, but this is a wonderful group to help support us along the way.

Accepting the diagnosis takes time, I think. I think many of us suspected something was wrong long before we were officially diagnosed, but it can still come as a shock.

I hope you are able to discuss treatment options (DMTs) with your doctor and find the best fit for you. We can’t get any guarantees how each one will work, since we are all so different. But it helps to have a good doctor who understands the meds and can help us weigh the benefits vs the risks.

I hope you’ll let us know what you decide and that you’ll come back to vent or ask questions when you need to. We even find ways to laugh a lot, too.

[Jesmcd2 CommunityAmbassador]

Hi and welcome Debriley

Accepting MS? Who are you trying to kid? I don't even think about on my great days! 😊 But it's a shocker when it needs it's time back, so to speak.

I'm sure you have a TON of reading material on DMT's, but heres a site with them all listed. ☺ mymsaa.org/ms-information/s...

We are always here, to cheer you on, or listen to you scream! So welcome again!💕

J🌠

[Kenu]

Welcome to our crazy group of MSrs’. 🤪This is a great place to vent and find out lots of information from those with MS👍 I have had MS for twenty three years and been on seven different DMT’s as with new advances have changed. I am on Aubagio for the last year and half with stable MRI’s with no relapses or side effects. 🤗 Before this I was on Tysabri for seven years and it worked Great with little side effects. I had to switch due to Cancer🤬 I am still upright with a afo on right foot for foot drop. I use a Trek walking stick when tired or long days. Yes I still drive and get around quite well, just have to watch fatigue 🤷🏼‍♂️ I pray a lot and try to adjust the best I can day by day 😉. Hang in there and feel free to ask any questions 🤷🏼‍♂️ Bless you and your family 🙏👍🐾🐩 Ken

[Babslover]

Hi Debriley: this is babslover, I use Copaxone a shot that goes just under the skin, not into the muscle. Three times a week, you can also get a auto injection pen so you don’t need to see the needle when you give yourself the shot. I’ve been on this for years and no dramatic side effects, I did have a minor relapse a few times but I just need to remember what temperature I can deal with and for how long to be outside . Hope this helps you and anyone else that is reading this.

[Hidden]

Hi I have been living with rrms for almost ten years now, and for 3 i took nothing because of the side effects, then although i hate needles after optic neuritis and losing some of vision in left eye started rebif, and have been far more stable than before, i know that people react differently to different treatments. If you are fortunate enough to have a neurologist who will listen to your input and let you try different things i encourage you to try different things and see what works best for you.

[Debriley]

Thank you all for your replies. It's all so confusing. I have gone off all of the medications that I could (I still have to take BP meds) because I wanted to know if I was having side effects or symptoms. I have also gone to a specialist for every symptom i have and it's all MS induced stuff. Im healthy as a horse aside from my BP and MS. I needed to know what's what before I could accept my diagnosis, I guess. I'm just trying to get as clean as I can before my next MRI. I love my neurologist but I'm not fond of my MS Specialist. I have Kaiser so I'm not even sure I can change her or how many MS Specialists they have. There aren't any in my hometown so I have to go about 3 hours away which is fine. Anyone doing Ocrevus or Rituxan have any input on side effects? Are they mostly during the infusion or donthey last for months? I know everyone reacts differently but I just want to know real stuff from real people. When I was doing the Glatopa I didn't mind the injection at all but about 10 minutes after I would get injection site reactions and wherever the injection was - the entire general and surrounding area would hurt sometimes up to 3 days. It wasn't worth it to me. I've lost at least 50% of my hair over the last couple of years so I don't want to try the Aubagio.

My son is 10 and I don't really know how he's processing it. He doesn't open up to anyone - not even his counselor. Even on my worst days I force myself to be "normal" because I don't want him to worry or be scared. I'm sure he's researched because that's what he does. I try to keep it simple. I basically told him that we now know why I haven't felt well for awhile and I will continue to have good and bad days but I'm not going to die from this.

My husband is a rock. I worry about him not taking care of himself because he's always picking up my slack and taking care of me and our son. It's just been a really hard mental transition realizing things are just going to be different. Frustration, anger and confusion are my top 3 feelings about my diagnosis. I know everyone in this group knows so I feel silly saying it.

I also know things could be a lot worse. Some of you are really dealing with far more than I am so I really appreciate you taking the time to share with me. I hope I can be as helpful to someone with the diagnosis one day.

[Babslover]

I understand your point. None of us ever thought we would get this disease. The main way for me to keep going as much as I can is to keep doing what you can and don’t over do it because then you will be disappointed. What isn’t done this minute will be there the next. Minute, hour or even a day. We are doing what we can and we, family and friends need to realize that also. Together we can keep each other going. 😊

[Yehealth]

Hi Debriley, I know exactly what you are talking about!! I was diagnosed in 2013 with Ms and I have almost every symptoms you are experiencing at this time. I gave it to our lord and savior Christ Jesus!!!

Hopefully you will feel better soon!!