I was diagnosed with a severe case of RRMS a year ago

[YouBeingMe]

I’m still coming to grips with it. I look back an see so many things that could have led to my diagnosis sooner. I turned 40 almost a year ago, and started walking with a cane about a year ago. For 11 years I was the breadwinner and my husband stayed home with her. Things will be changing lol Two days ago I was let go from my job and my husband told me when that happened, I retire and he’ll find a job when needed, I definitely can’t work. 98% of the time I’m awake I constantly feel like I’m standing on a small fishing boat on a lake. I take monthly injections to alleviate my symptoms and sometimes it does. I’m glad I found this place. I am a mother of a 4th grade autistic daughter who tries to help me anyway she can.

[Seasha]

Welcome YouBeingMe!

We're glad you found us too, but sorry you had to let go of your job. It has happened to many of us. I hope the transition goes smoothly for you as you start this next chapter in your life. And hope being home now with your daughter enriches both of your lives. We are here for you, so if you have any questions or concerns, ask away!

What kind of monthly injections do you take for your symptoms? Hope to hear more from you. Take care.

[pennstater]

Welcome!

Likewise here - symptoms before bring blindsided by diagnosed at 42. Also has to leave the work force before I wanted too. That being said, it truly turned into a blessing. Not working allowed me to focus my energies on my family and my health.

Hope to hear a little more from you. Are you taking anything to try to prevent future relapses? Have you tried Physical Therapy to help with balance and strength?

Agai, welcome. Hope to see more of your posts!

[REG53]

Welcome to MSW

[YouBeingMe]

Thank you so much guys! I wasn’t sure if I could say, but I take an injection of Kesempta once a month. I’m sooo glad to have company here with people who were blindsided like I was. Lol

[pennstater]

Hopefully you are having good luck with kesimpta.

We do have a separate forum for medications and a specific one for kesimpta. If you want to check it out and see what other users have posted, you can find it here.

https://www.msworld.org/forum/forum/...ments/kesimpta

[YouBeingMe]

Awesome thank you for the link to get me there easier

[YouBeingMe]

Well, my husband told me I am classified by my doctors as having Secondary-Progressive (SPMS), not RRMS. So many letters lol

[Mamabug]

I, also, hope that the transition to not working goes well. I've had MS since 2002 and went on SSDI in 2008 at the age of 46, so it's been a lot of years since I've been able to be employed. I progressed from RRMS to SPMS in about 2014, and went off of MS meds in 2019, with my doctor's approval.

I encourage you to find something to replace employment in your life. For me, for many years, it was volunteering. As the years have continued to pass, and my disease has progressed, I do much less of that. Some people pursue or develop hobbies or other interests. It seemed important to me to replace work with something else. I hadn't realized how much I must have bought into our North American view that "we are what we do", and not just who we are.

I also encourage you to look for ways to preserve your health and abilities as much as possible. I added a functional medicine doctor to my health care practitioners and started following a diet similar to The Wahls Protocol -- no gluten, no dairy, low sugar. I cut out processed foods, GMOs, MSGs. I eat grass fed beef, free range chicken, wild caught fish, mostly organic produce and other foods. I purged my kitchen of toxins (plastics, microwave, etc) and purchase organic products for personal care, household cleaning, etc. I had my amalgam dental fillings removed and replaced.

This is a lot, and it didn't all happen at once, but my MS has been stable since I made these changes, in comparison to a rapid decline that I'd begun to experience after SPMS began. I had hoped that I would see a reversal of symptoms, but, if that has happened at all, it's been very minor, and not for sure. But, stability is worth a lot with a progressive illness like MS.

You might be able to find a functional medicine doctor in your area by googling it. I wish I'd known about them years ago.

[pennstater]

Well, my husband told me I am classified by my doctors as having Secondary-Progressive (SPMS), not RRMS. So many letters lol

So were you diagnosed with MS a while ago and now SPMS? Or did they diagnose you with SPMS within a year of diagnosis, which I think would be rare?

[Pistachio]

Welcome to the greatest, most supportive club nobody ever hopes to be a member of.

I'm sorry you've lost your job. Are employers in your state allowed to let someone with a disability go? I'm in Canada and that would be a sticky situation here. They'd have to make accommodations first. That's terrible

I was diagnosed, officially, with RRMS, just recently, at 50 years of age. But, in reality, I've likely had MS since 2013. It's mostly my own fault because I ignored symptoms and just worked through them. Such is my nature. I had a home daycare for 12 years and gave it up in 2015. It was getting hard for me and caused me a lot of stress and anxiety. Looking back, I now realize it was the MS.

I was also diagnosed with Lyme disease in 2021.

Now I work in my husband's chiropractic office. It works well. I'm mostly sitting and when I have a bad day he does stuff that requires getting my butt out of the office chair (vacuum, sweep, getting the mail, otherwise tidying the office). We only work 2 full days and 2 half days each week so it's not gruelling. I'm also able to take time for appointments. It's a good system for us. We're not paying an employee and I can still contribute but there's very little performance stress. I've also chosen not to openly disclose my diagnosis so no-one knows other than hubby and me. It's a personal choice that I'm happy with.

Welcome! It's a supportive bunch of folks here

[YouBeingMe]

Thank you so much for your insight. I have been told by my mom about Wohls diet and sent me a book

[YouBeingMe]

So were you diagnosed with MS a while ago and now SPMS? Or did they diagnose you with SPMS within a year of diagnosis, which I think would be rare?

no I, I was diagnosed with MS initially, but my neurologist became frustrated with how fast mine was progressing, and quickly started narrowing down to what was going on. I was the one that made the title typo, for that I apologize.
I just got a letter today letting me know I have been denied unemployment because I’m under a doctor’s care for the condition. In a month I’m seeing a new neurologist because this one is depending on me to tell him what I need, well the information I get from google lol

[YouBeingMe]

Welcome to the greatest, most supportive club nobody ever hopes to be a member of.

I'm sorry you've lost your job. Are employers in your state allowed to let someone with a disability go? I'm in Canada and that would be a sticky situation here. They'd have to make accommodations first. That's terrible

I was diagnosed, officially, with RRMS, just recently, at 50 years of age. But, in reality, I've likely had MS since 2013. It's mostly my own fault because I ignored symptoms and just worked through them. Such is my nature. I had a home daycare for 12 years and gave it up in 2015. It was getting hard for me and caused me a lot of stress and anxiety. Looking back, I now realize it was the MS.

I was also diagnosed with Lyme disease in 2021.

Now I work in my husband's chiropractic office. It works well. I'm mostly sitting and when I have a bad day he does stuff that requires getting my butt out of the office chair (vacuum, sweep, getting the mail, otherwise tidying the office). We only work 2 full days and 2 half days each week so it's not gruelling. I'm also able to take time for appointments. It's a good system for us. We're not paying an employee and I can still contribute but there's very little performance stress. I've also chosen not to openly disclose my diagnosis so no-one knows other than hubby and me. It's a personal choice that I'm happy with.

Welcome! It's a supportive bunch of folks here

Thank you, I think my boss worked with me as long as possible. I was diagnosed in 2021, but when I look back over a few years I can see signs I remember but tried to shake them off til things got so much harder this year. I decided to tell my boss this last November and I remember he told me about a famous county singer that has MS and said I should be able to do my job as long as I’d like. I guess this month he changed his mind and let me go saying that I should just take the day and let me go. He tried to do right by me i think, paid me for 3 weeks vacation time (when i usually got 2 weeks annually), a 2 weeks severance.

I deposited them on my way home and kinda wish federal disability SSI would approve a little faster I’ve been told it is what it is.

[YouBeingMe]

I, also, hope that the transition to not working goes well. I've had MS since 2002 and went on SSDI in 2008 at the age of 46, so it's been a lot of years since I've been able to be employed. I progressed from RRMS to SPMS in about 2014, and went off of MS meds in 2019, with my doctor's approval.

I encourage you to find something to replace employment in your life. For me, for many years, it was volunteering. As the years have continued to pass, and my disease has progressed, I do much less of that. Some people pursue or develop hobbies or other interests. It seemed important to me to replace work with something else. I hadn't realized how much I must have bought into our North American view that "we are what we do", and not just who we are.

I also encourage you to look for ways to preserve your health and abilities as much as possible. I added a functional medicine doctor to my health care practitioners and started following a diet similar to The Wahls Protocol -- no gluten, no dairy, low sugar. I cut out processed foods, GMOs, MSGs. I eat grass fed beef, free range chicken, wild caught fish, mostly organic produce and other foods. I purged my kitchen of toxins (plastics, microwave, etc) and purchase organic products for personal care, household cleaning, etc. I had my amalgam dental fillings removed and replaced.

This is a lot, and it didn't all happen at once, but my MS has been stable since I made these changes, in comparison to a rapid decline that I'd begun to experience after SPMS began. I had hoped that I would see a reversal of symptoms, but, if that has happened at all, it's been very minor, and not for sure. But, stability is worth a lot with a progressive illness like MS.

You might be able to find a functional medicine doctor in your area by googling it. I wish I'd known about them years ago.

Thank you! I’m trying my best to adjust