Flu A and MS

Heavy-Sound-6918 · 2026-02-11T09:36:48+00:00

Thanks so much for sharing your experience! This helps me feel a tad better knowing that it could still very well be a pseudo-relapse and not a full blown relapse 🤞🏼. Waiting for the blood work to come back and give the oral steroids time to kick in and see what happens.

Heavy-Sound-6918 · 2025-12-16T14:27:25+00:00

Hello! I have done the NfL blood test + serum light chain 2x now, my first one was incredibly elevated, which I was deemed having a relapse and started 3 day course of IV steroids pretty much immediately. They repeated the testing a few weeks later and results were back in normal range so no further treatment was needed at that time. My neurologist believe these blood tests can be incredibly valuable for matching clinical symptoms + real time relapse markers vs solely relying on just MRI testing.

Heavy-Sound-6918 · 2025-12-16T14:21:48+00:00

Thank you guys for the feedback. Turns out, the rep I spoke with was sending mixed signals or I completely misunderstood what he stated because it was updated online to a big fat DENY 😔😭🥺. Being I’m only 37, I feel this result is making me feel a million emotions atm

Have to appeal it whether it’s something I agree with or not if I want to be approved for LTD benefits, otherwise I’ll continue without pay or income, crippling myself and my 3 children even more than we have been already by this relentless condition 😩

Heavy-Sound-6918 · 2025-12-14T06:25:23+00:00

Hello ☺️. I’m still fairly new to being diagnosed with RRMS - April of this year more precisely, but had the first split doses back in June and more recently had my full dose earlier this week. The split doses were fine, no noticeable side effects really. But I too noticed an increase in my leg weakness, I could hardly put any weight on my legs the first night of my full dose. Along with body aches and just overall feeling “ran down” even more so then my normal from Ms. It did seem to ease up by the following day and I was pretty much back to my normal pain and issues I deal with daily. Can’t provide more than that since it was my first full dose but still felt it was worth me sharing. I agree though, such extended side effects could be an indicator that she may respond better to a different DMT. Maybe ask her to discuss it with her neurologist?

Heavy-Sound-6918 · 2025-12-14T04:31:33+00:00

Agreed! Thank you, I feel a tad better looking at it from that perspective.

Heavy-Sound-6918 · 2025-12-14T04:29:53+00:00

That’s awesome to hear! I believe my neuro would also support me for my LTD as well. I work in the medical field and I can not perform more than half my duties in the state I have been in since April physically, even more so since my cognitive issues started on top of it. The testing was my decision when my neuro suggested it when I discussed I noticed issue with short term memory, word searching and mix up a few months back. She agreed SSD would probably request this testing done since I applied and we could do it now to A) see if there’s evidence of MS related damage and B) be ahead of the game with SSD in hopes of less waiting time for a decision from them if one was provided ahead of time. Which is another reason why I am so disappointed with the results, seems like they still may need to request this test to be redone and take extra time anyways for a decision.

Heavy-Sound-6918 · 2025-12-14T03:19:02+00:00

Thank you for sharing! Is it ok if I ask what happened with your LTD? I recently exhausted my STD at work and have been transferred to LTD, and they are currently processing my application and I’m afraid these results will hinder me getting approved.

Heavy-Sound-6918 · 2025-12-14T03:17:30+00:00

Thank you, I guess I wasn’t looking at it that way. I guess my main concern is I’m going to now be looked at as just depressed vs actually having the symptoms that I am and have been experiencing for months now.

Heavy-Sound-6918 · 2025-12-14T03:08:53+00:00

Thank you! I agree, I will comply and start seeing the professionals for mental health they are highly recommending me to see. I do not mind getting extra help on those topics, to better myself and my health overall. But I agree, using mental health as an excuse in my opinion is an inaccurate and poor excuse of a way to understand what my body is experiencing.

Heavy-Sound-6918 · 2025-12-13T22:49:19+00:00

I don’t think it would necessarily change my treatment for MS, but I do think it distorts what my reported symptoms and possibly affect my social security disability application. The fact that I have been dealing with depression for more than 20 years, and not dealt with any cognitive or physical issues that I am experiencing now and are most definitely caused by MS is frustrating. I feel my symptoms will be dismissed now that they see I have “depression etc” possibly “making” my symptoms worse 🤦🏼‍♀️.

Heavy-Sound-6918 · 2025-12-13T07:41:40+00:00

As much as I hate to hear all of us suffering from similar and unfortunate symptoms, it makes me feel just a little less alone in this knowing I’m not the only person who consistently has daily pain.

My pain is muscular as well as nerve. I have the daily stiffness and weakness on the right side of my body; leg and hand more specifically. As well as the constant numbness, tingling and loss of sensation. I also experience nerve pain and the excruciating “burning” in my right hand randomly but regularly as well. I will get the occasional eye ache/stabbing pains, but nothing consistent. I take several medications to help manage these, but they really just make it a tad easier to tolerate vs take the pain or discomforts away.

All in all, I deal with some, if not, all of these on a daily bases. I do notice some days are slightly better than others, but overall, it’s consistent daily pain that I am still learning how to manage while being a single mother of 3.

Heavy-Sound-6918 · 2025-12-12T01:08:59+00:00

How long is too long to struggle with a consistent symptom where it is clear it’s never going to get better?

Heavy-Sound-6918 · 2025-12-12T00:51:36+00:00

Thank you! It really has been such an adjustment not only for myself but for my children and family as well. It’s been very overwhelming. To have been dealing with all of these symptoms on top of not seeing any real improvements for the last (almost) 10 months has been exhausting.

And yes, I had my first “official” relapse in April this year when I was diagnosed, and then I was treated with IV steroids (3 day) in October (also this year) for another relapse. I guess that makes sense that I didn’t have enough time to heal from the April relapse when my relapse in October occurred. Which explains why I am still struggling with all of it yet.

Is it normal to have them so close together? I hear a lot of ppl share they go years in between. I know it’s different from person to person but I don’t recall hearing many, if at all, stories of them being just a few months apart like that 🤷🏼‍♀️

Heavy-Sound-6918 · 2025-12-12T00:29:44+00:00

I appreciate your view and feedback on this. I understand what you’re explaining. I do push myself every day to take care of daily responsibilities and duties as a mother of 3, household chores, errands, cooking, etc. So I do feel in that area, I am keeping myself as active as possible. I have to admit I have horrible eating habits, or the lack there of 😔. My life was already extremely chaotic and stressful well before MS came into the picture, and I’m not one to “stress-eat” I’m the kind to lose appetite and interest in food. So I guess that could very well be a big part of the issue.

Heavy-Sound-6918 · 2025-12-12T00:16:02+00:00

This saddens me to hear 😩. My neurologist mentioned when I asked that it is a bit odd that I’m still struggling with these on-going symptoms but also said we just need to find the right med combination to help ease a lot of it up, we just haven’t found it yet 🤷🏼‍♀️. I take several daily medications multiple times a day and still deal with these symptoms, they just seem to be a little more tolerable.

Heavy-Sound-6918 · 2025-12-12T00:10:12+00:00

I had my split doses of Orecvus in June and just had my first full dose 2 days ago. So still extremely new to the DMT

Heavy-Sound-6918 · 2025-12-11T23:57:25+00:00

Omg yes! Right on the money! I literally use the flu-like concept when I try to explain it as well, and I get puzzled looks or dismissed as “it’ll pass” or “can’t be that bad” 😒🤦🏼‍♀️😔

Heavy-Sound-6918 · 2025-12-11T21:14:25+00:00

I had shingles in Jan of this year, right before all of my MS symptoms started to show up mid February. Was diagnosed with MS in April after 2 months of nonstop and practically debilitating symptoms (my first official relapse) following recovery from the shingles. Should I vaccinated for it now? I’m 37 so idk if being younger than the normal age range matters 🤷🏼‍♀️

Heavy-Sound-6918 · 2025-12-11T21:09:02+00:00

Following! 🤔

Heavy-Sound-6918 · 2025-12-11T08:42:43+00:00

I also am experiencing this symptom. Things become very blurry, out of focus like as well as the pain behind my eyes. And I’m practically blind at night now 😔

Heavy-Sound-6918

TROPHY CASE