Feeling lost

[Debs5997]

I am feeling so incredibly depressed. I know it's early, having just had my first full infusion of Ocrevus, but I feel I am still in a downward spiral, weaker every day. My husband and my children don't understand, and they tell me to stay positive. I am not a quitter, but maybe my body is. It's been 23 years. I am grateful I was able to raise the kids and see them go off on their own, but I mourn the loss of the woman I used to be. I'm sorry to put this out there but I have no one to talk to.

[mrsmike]

I know that feeling so well. Please try to stay positive, I know it's easier said than done. Just remember we are all here for you.

[Morllyn]

Debs5997 , as mrsmike said, please stay positive. We really do know how you feel.

It is wonderful that you were able to raised your children and prepared them for the next chapter in their lives now try and relax so you can prepare for your next chapter. Give the medicine time to work. I know that we share stories of our MS, our symptoms and how different meds work for us but remember our bodies are all different and may not react the same way to diseases and medicines. Just because someone else has gotten quick relief of their symptoms does not mean everyone will.

You can do this. 🎵 We are women, we are strong, we are invincible! 🎶😁 Sorry, didn’t mean to bust out into an old song there but, you raised children! You are awesome!

And lastly, never apologize for saying how you feel, everyone needs to share their feelings sometimes and that is part of what this site is for.

[Sukie427 in reply to Morllyn]

I AM WOMAN HEAR ME ROAR--EVEN IF I DO HAVE MS!!! I JUST ROAR MORE AND LOUDER!!!!

[melack01]

I think we all mourn what we have lost. All through life we've had changes that sent us in different directions, but unlike MS most of these were by choice. MS is such a monster because it seems to take away all our choices. The choice we have left is how we deal with it. You raised a family and even for non MS'rs that's a fork in the road. I will always be grateful that I was not diagnosed and the issues before being diagnosed happened after I raised my family. Mainly my husband is stuck with the mess I've become, and he's real good about it. Give the medication a chance...I've seen many positive remarks from people with MS on it. Bless you and prayers and hugs sent.

[greaterexp]

Debs5997 , how I wish we could all embrace one another across the miles, but even with our limits, we can express to one another our hearts.

If anyone can understand your feelings well, we can. I doubt there is even one here who has not felt that intense grief of losing what once was. It’s so very hard to accept, and I know I go through the roller coaster of thoughts and emotions. It doesn’t mean we’ve given up, but need time to feel our grief.

It’s obvious you’re a determined and positive person, who is grateful for what you’ve had, and what you still have. I pray you can feel this grief, work through it, and feel better quickly. Do watch for depression and get treatment if you need it. But there are many shoulders here for you to lean on or cry on.

Please check in to let us us know how you’re feeling. Vent all you want.

[Debs5997]

Thanks to all of you. Your sentiments make me realize I am not alone and my feelings are validated. I have always been the strong one, the leader and go to person in my family. It kills me that my grandchildren will never see me as the energetic, up for anything woman I was. You all made excellent points. I will get through this.

[Linda3579 in reply to Debs5997]

It brought tears to my eyes when you mentioned your grandchildren. It's one of the things I feel so sad about. It could have been me writing your posts.

Thank you for sharing your feelings.

Staying positive is a big challenge but

well worth it.

I will be having my second infusion in

two weeks. I'm hoping for some improvements.

Take good care.

[Debs5997 in reply to Linda3579]

Thank you, and good luck!

[erash]

Debs5997

Hang in there! How long has it been since you began the Ocrevus? My neuro says she's seeing good results in her patients. I wish u well 🌈

[Debs5997 in reply to erash]

I just started the drug last month. Thank you for your kind words.

[mayestas]

I think we all miss the person we once were. Never apologize for how you feel, this disease can take your body but don't let it take your spirit.

[judymax]

I too feel like I'm going downhill after going off of Copaxone and having my first round of Oxrevus....hope this gets better after second infusion Tuesday.

[Hidden in reply to judymax]

judymax, for how long have you used copaxone? And, what has been your symptoms? My apologies for the directness, but I have finally decided to try Ocrevus, as it seems to be beneficial to many. MS has really affected my life by "taking away my legs". My ability to "walk" compares easily to walking about in a harvested soybean field, in the winter, about noon, on a sunny day. The mud sticks on the boots, causing them to weigh about 15 pounds each. Well now, that's exactly how my feet/legs feel every day...all day, about 30 minutes after waking. I am concerned about the same situation you addressed. I look forward to your future posts as you progress through the ocrevus program. Thank you.

[judymax in reply to Hidden]

I was on copaxone for eight years and decided to try Ocrevus to get away from the needles.....tired of being a pin cushion! After first infusion I've been very tired and my balance seems to be worse. I am hoping things will bet better after my second one on Tuesday.

[Linda3579 in reply to judymax]

I have felt the same way since I went off copaxone. I will be getting my second infusion in two weeks. I hope

it gets better for all of us.

[RobertCalifornia]

Do not feel alone. My family does not understand what I /we are experiencing. I don't even try to explain as I am told al I talk about is MS. I have had my first two infusions of Ocrevus. It has been 4 months but I am detecting small improvements. I understand it can take up to two years to realize the full benefits of of Ocrevus. It does give me hope for slowing down this monster. I do have PPMS so it is my best hope.

[Debs5997 in reply to RobertCalifornia]

Thank you. I wish you success with this new drug.

[lindaz9]

I KNOW EXACTLY WHAT YOU'RE GOING THROUGH. I ALSO FEEL LIKE MY SYMPTOMS ARE NOT GETTING ANY BETTER. I CONSTANTLY THINK OF HOW I USED TO BE. MY HUSBAND AND KIDS ARE GREAT, BUT THEY DON'T KNOW WHAT I AM FEELING. I WAS ONLY DIAGNOSED WITH IT IN JANUARY SO I DO HAVE A LOT OF QUESTIONS. I AM VERY LOST. BUT I KEEP THINKING, IT COULD ALWAYS BE WORSE, AND THAT KEEPS ME GOING. JUST TRY AND KEEP STAYING STRONG; I KNOW IT'S EASIER SAID THAN DONE. YOU CAN DO IT.

[Debs5997 in reply to lindaz9]

Thank you. It helps to know others are facing my issues.

[Sukie427]

Debs5997 , I don't think there is one person on this website, or anyone else who has MS, that hasn't felt that way at one time or another. I suffer from dysthymia, which I've had since childhood, and my mother, grandmother and aunt suffered from it, too. Try to stay positive, get on an exercise program, and do what you can handle. If it doesn't get better, you may want to seek help. I've been on anti-depressants for years, and I know that I begin to feel totally different without them. Depression and anxiety are diseases, just like MS, not crimes, and you shouldn't hesitate to seek help if you continue to suffer. Sukie427