Need Help

[nicoly3467]

Hi Friends,

I would appreciate your encouraging words tonight. I found out I have another relapse again. Just had one last October and May last year. Ugh! This relapse is minor thankfully, because I caught it earlier first time in 6 years having MS. I’m happy about that!

A few weeks ago, I started feeling more weak and fatigued than usual, then it lead to left arm pain around my elbow, pain started up and down left arm to wrist, then whole arm and hand started feeling weaker. I was getting shooting pains down my spine last few days and some weird Star Wars electric sensations in my head so I knew something was up. I get these weird electric head sensations usually before a relapse. I called my Neuro and started today on Acthar gel steroid injections for 5 days.

I have an aggressive Relapsing Remitting Ms and get frequent relapses-about 2 per year.

I am worried and discouraged tonight, wondering if will this be my life for now on with relapses every year-getting steroids. I thought today that I may need to accept this-Not sure. I just always hope for the best.

I feel things have been physically changing more for me this past year, even though brain 🧠 Mri in Dec was good. My Neuro told me last year in May after severe relapse I didn’t fully recover from-I’m not Secondary Progressive, so maybe in between whatever that is.

Would anybody mind to share what you noticed before being Dx with Secondary Progressive? Only if you feel comfortable sharing.

MS is SO difficult. It’s a constant battle with peaks and valleys and not made for the weary.

Thanks for listening. I appreciate it. I’ll still keep posting my photos to make you all smile... 😊

Nikki

[Kenu]

I just had a little bout and didn’t have any steroids. Went in and had a cervical MRI and brain MRI and came back stable, no improvement and no decline in lesions 👍🙏. I probably waited a little too long before telling doctor about it and that’s probably why no steroids? He is a MS specialist and has written a couple books 📚. He thinks I have graduated from RRMS to he calls it “SRMS”, secondary relapsing ms ? Not SPMS? Says it right between the two. Oh well in other words it’s progressed but the Aubagio is doing it’s job so unless something drastic happens we should stay on it. Remember this is my first episode in over two years on Aubagio 👍. I have the same symptoms that you described but most of it subsided. I do have more pain, spasms, fatigue,headache, blurriness at times, and wired feelings but I guess after twenty four years I have been pretty fortunate 🙏. Have you talked about different DMT’s? I know thru twenty four years I have been on seven different DMTS as one quit working on to the next one, especially as new ones came out 👍. Hope you can figure out something soon 🙏😊😉 Ken 🐾🐾

[nicoly3467 in reply to Kenu]

Ken-thanks for your reply. You’ve had MS for a long time! I have been on 5 different DMT’s to date-2 have been most potent type-Ocrevus and Tysabri. Tysabri worked well, but still had about 2 relapses per year. I had to go off of it due to 2 year mark, because I had a positive JC Virus score that slightly increased and too risky for PML. Now on Tecfidera for last 3 months. I’m glad Aubagio has helped you so much. Many of your symptoms sound similar to mine.

[TracyBelle]

It is interesting that your relapses seem to accompany the changing of the seasons. I lost my vision in November 1998, and began having pain in April 1999. I have always felt that my MS symptoms are much worse in the fall and spring. I have seasonal allergies during both spring and fall, because I live in Dallas. I have told my Dr my theory and he said that his other patients have said the same thing. But then he said that seasonal allergies don’t affect MS. But- Recent research shows that his patients were correct because allergies raise inflammation and inflammation makes MS worse.

I am truly sorry for your hardships and I hope that you are better soon- Tracy

[nicoly3467 in reply to TracyBelle]

Wow that’s interesting info! I hope scientists consider doing more research on the allergy-Ms inflammation link. Thanks for sharing.

I have nasal allergies that are activated by pollen or other airborne things year-round, but milder in summer. Usually a month before Spring in Feb seems to be the strongest allergy.

Thanks, Nikki

[greaterexp]

I’m sorry for this new relapse and for how you must be feeling. Are you still taking Tecfidera? Does your doctor think that another change may be in order?

You strike me as someone who has great resilience, and great attitude, and much strength. Those are attributes that will surely help you as you face the changes of MS. I hope this relapse is the last one for a long, long time. We’re here for you.

[bxrmom in reply to greaterexp]

greaterexp I was wondering the same thing... nicoly3467 has your neuro said anything about possibly switching to something else because of your frequent relapses?

Jessie

[nicoly3467 in reply to greaterexp]

Awe thanks so much for your kind words.

Yes, I’m still taking TECFIDERA-started this past Dec. I like the Tx so far and seems to be working well. I believe it helped cut down on worse effects of relapse; But I’ll find out how things are really going on when I see my Neuro next week. She’ll test my arm and leg strength, in addition to other stuff. It helped this time to pay more attention to my old symptoms worsening and/or new symptoms happening. In this case, I had both going on-symptoms lingered for a few weeks off and on until they became stronger and stayed longer, so then I knew to call my doc ASAP.

[RoyceNewton]

G'day' I would like to inquire as to what Disease Modifying Therapy are you are taking?

[nicoly3467 in reply to RoyceNewton]

Hi! I’m taking TECFIDERA-oral medicine since Dec.

However, I’ve been on 2 different infusion treatments before (Tysabri and Ocrevus). Tysabri worked well for the two years but still got relapses then had to go off of it due to a + JC virus score w/ higher risk of PML. OcRevus gave me the most problems out of all my treatments; But this has worked well for others. Also, I was on

2 different injectable meds- (Copaxone-in 2013 when first diagnosed, then Rebif in 2014).

[RoyceNewton in reply to nicoly3467]

I have never heard of PML with Tecfidera which I have been on for probably a decade. I might have the dates wrong, as soon as it became available, then. PML relates to some other Drug only from what I understand. Anyway, Tec will not stop it only slows Relapsinnbg Remitting ms down. So keep it up and relax it is a long journey.

[CalfeeChick CommunityAmbassador]

nicoly3467 I'm so sorry for all you are going through, as greaterexp said, it seems you are very strong and knowledgeable about your MS. Every one one us is different in our MS Journey. It sounds to me like a new DMT might be in order. I'm also JCV+ and surprised your doc kept you on Tysabri then the Tecfidera. I'd have been pretty anxious, you are one strong lady! I sure hope you are feeling a little better tonight.

[nicoly3467 in reply to CalfeeChick]

Thanks so much for your reply.

I’m feeling better tonight than when I posted this so that’s good! My JcTiter score is on low end of positive and Tysabri has a higher risk of PML so when my Titer digits crept up a few notches at the 2 year mark when taking it-my Neuro switched me to Ocrevus. I was on that for over a year and now TECFIDERA since last Dec, which has a lower risk of PML. But thinking about it-I suppose there’s a risk of any kind with a DMT.

Thanks, Nikki

[Ali_B62]

Sorry to hear the MonSter is on the move in your case and hoping that you reach a more stable state soon.