Please Help me Not be Bitter

[angel22_99]

I'm not sure what I'm looking for here...advice, empathy, a swift kick in the backside?

First some background.

I am currently 43 years old. I was diagnosed with RRMS in October of 2012. My symptoms started exactly on January 3, 2012 when I woke up that morning and my left pinky and ring finger down to my elbow was numb.

It's been numb ever since.

I was officially diagnosed in October 2012 when my MRI showed new lesions (at this stage, I only had lesions on my c-spine).

Christmas week of that year, I got my first bout of optic neuritis in my left eye and I was hospitalized for three days with IV Steroids. The vision in my left eye never fully recuperated.

My disease has been pretty quiet since then. I have many day-to-day symptoms such as numbness in tingling in my legs when I walk long distances, but nothing too limiting.

In the meantime, my husband's health has been declining and he is only 47 now. He does not have MS, but was diagnosed with non-typical Trigeminal Neuralgia (TN) during the summer of 2015.

Getting him on the appropriate medication so he can live a "normal" life was a very long road because he was allergic to the main drug that they give for this condition.

Once we got his TN under control, he got an infection in his mouth (Ludwig's Angina!) that caused him to spend a week in intensive care and have emergency surgery. This past summer, he had to have his hip replaced, then surgical site got infected, so he was back in the hospital again.

On February 5th, he lost his job, but later that month he found a new job...HOWEVER, two weeks ago he gets a tiny cut on his knee and it gets infected with MRSA...so it's back in the hospital again for emergency surgery...and now he's home with a wound vac and a picc line...not able to work.

I also have two kids so I have been basically holding up my family by myself for years now.

During this time I am noticing a subtle uptick in my MS symptoms. One thing is that I notice I can no longer walk more than 5 minutes without my thighs going completely numb. In about July 2017, I also notice a decline in my vision of my left eye. I visited my opthamologist (who I had been a patient of since diagnosed with MS) and he didn't see any changes.

I had been taking Gilenya for many years but I stopped taking it about a year ago because I hated dealing with the specialty pharmacy. I ended up getting on a MS drug study in November, just for the free meds and the close monitoring.

So about three weeks ago, just after the time of my husband getting a new job, I realized that the vision in my right eye was diminished. I had just had a whole vision work-up (with a new eye glasses prescription) in December and I had my yearly visit with my Neuro in February and nothing was going on.

I should note though, when I got my MRI to be on the MS drug study (November 2017), I had two new lesions on my brain (which I never had any before) and one was active.

My vision had been getting worse and worse, but I had chalked it up to stress from my husband's issues and I just ignored it--I figured it couldn't be optic neuritis because I did not have any pain. On Easter Sunday, the flashes started, which motivated me to email my neurologist.

I get an appointment with the Neurologist on that Tuesday, who sends me back to the eye doctor, which I couldn't see until Friday. The eye doctor sees "a bit of paleness" in my right eye, but says it's too late to treat.

I visit my neuro (and the people from my MS study) after that on Friday, who all agree that it's too late to treat (IV Steroids), but they would try anyways...since this is my vision after all. They tried to also get me in for an MRI on Friday, but it didn't work out and now I have to wait until Monday.

The doctors also couldn't get their act together to figure out how to give me IV steroids without hospitalizing me, so I guess if I wait until Monday it's REALLY REALLY going to be too late.

Here's where I go off the rails: So now I have to go about my life like nothing's wrong while I have diminished vision for probably the next 3-6 months??? (I have severe blind spots in my right eye that are big enough for me not to see traffic lights if my eyes are at the right angle)This just SUCKS!

I am extremely grateful because I'm not blind though...I am typing this afterall, it is just very exhausting to see. But people look at me and because I am very well dressed/put together and relatively fit that they think I'm being overly dramatic about my vision or making it up.

Even the doctors!

I am getting one of two reactions from them--Oh, it's not that bad! or Why did you wait so long??? GRRR

I am not only the financial provider for my family, but I am the one who has the health insurance. I am a CPA, so the ability to read words on a computer screen is 99% of my job. And I plan on keeping my job until they drag me away kicking and screaming from my laptop.

So what should I do? Should I insist on being treated, even if it does nothing? Should I just suck it up and try not to be bitter about it?

I also found something on Google about plasma replacement therapy for "extreme cases" of ON. I seriously doubt that anyone would think this is a serious case, but should I still ask about it? Has anyone had this done?

Any insight you all could give me is very appreciated.

[Jules A]

Well crap. I'm definitely a suck it up kind of gal but this is just too much! I am bitter for you and admire your determination.

You are far to young to be dealing with significant health issues in both partners. I have no advice other than to live as simply as you can and try to get your finances in order.

Hang in there and please keep us posted. I'll send good vibes your way.

[tejokid]

You don't have a full plate--you've got a full platter, one of those enormous, turkey-sized ones. You seem to be doing an excellent job of keeping track of the timeline of when things happen. I've never been on a drug study, but you might consider tracking your new or worsening symptoms and compare them to when you start or stop medications. (I was on Rebif for 18 months and my MS got worse and worse--since it wasn't "working" my doc put me back on Copxone, and within a few days all the worse and worse completely disappeared. It wasn't MS--the problem was Rebif.) MS is one of those things where sometimes, when you hear hoof beats, you have to look for zebras, not horses because the usual logic doesn't always apply.

When someone is carrying the full load as you are, the most difficult thing-and the most essential thing--is to take care of yourself. Ten minutes alone with a cup of coffee out on the patio is not an indulgence--it's a sanity break. Build care for yourself into your schedule--it falls in the same category as the airline warning to put your own air mask on before helping someone else. You are important to so many people in so many ways--take care that you can breathe too.

MS can throw a lot of ugly things at you, so anything you can do to be prepared for them will be to your advantage. Hope for the best but prepare for the worst--familiarize yourself with help agencies even though you don't need them now. Look for resources now when you don't need them so you're familiar with them when you do--it saves heartache and frustration and gives you more control. Benefits.gov is a good place to start, but there are many more.

As for bitterness... If things happen for a reason (I think they do), we may not understand the reason for the storm when we're getting pelted with hail, but time and perspective give us a much broader view. All this time you have been showing how much you love your family--not the hearts and posies superficial kind, but the down in the mud, giving it your all, walking (numbly) through fire kind. You have been teaching your kids what it means to be courageous and strong and what it means to be committed to family and to care for each other. You are creating kids who will carry those lessons into the world, and the world will be better for it. On the days where it's all you can do to put one foot in front of the other, remember that it's just one day with one day's problems--you don't have to slay all the dragons at once. Pace yourself--and breathe.

[angel22_99]

Thank you both for your kind words.

I have pretty much decided to take a leave of absence from work for about two weeks...maybe a little R&R will make an improvement, regardless of what my MRI says (I just had it done yesterday afternoon and haven't seen the results - I was waiting on that to make a decision).

I'm sure my doctor will sign off on it. I feel like that if I keep on going like this, my MS symptoms are just going to get worse.

[malaholic]

angel22_99, I don't know much about optic neuritis - and specifically I don't know whether timing of treatment is more critical for ON than for other types of inflammation - but several years ago I was treated with IV steroids anyway even though it was "too late to treat" and I still saw a dramatic (although not complete) improvement. If you generally tolerate the steroids well (not everyone does - for some people the side effects outweigh the symptom relief) then I'd advise that you still push to be treated.

In my case, this happened back when I was initially being diagnosed. The actual symptoms started in July, but for various crappy reasons I didn't get an MRI until the very end of August, by which time the lesions no longer showed as "enhancing". I was told that steroids are most effective if started within a couple days after the symptoms have peaked (at which time presumably the lesions would have been enhancing on the MRI) and I was long past that point.

I still asked to be treated, and I got the steroids over 3 days at the start of September. This was at least 6 weeks past what would've been the optimal treatment timeframe. Still, by the end of the 2nd of 3 treatments my double vision and balance problems were *much* improved. I never recovered completely - and I wonder sometimes if I'd have recovered to a greater extent had I been dx'ed and given the steroid treatment earlier - but it was still a dramatic improvement from where I was before the steroids even though I started "too late".

This was of course just how it went for me one time, and the flare wasn't optic neuritis specifically, and I generally tolerate the courses of steroids pretty well. Your mileage may vary. But I wanted to chime in since my experience was is a counterargument to the idea that it's necessarily too late for treatment to help.

I do agree wholeheartedly with your plan to take at least a short leave of absence. With everything on your plate right now, the last thing you need is to add any additional stress or responsibilities from work. Stress is a huge trigger for me, and during the timeframe I described above I deeply regret not having taken some time off to just rest up and take care of myself. That is probably another reason that I did not fully recover. You are wise to prioritize your own needs at this time. I wish you the best possible outcome - please keep us posted on your MRI results, whether you go for treatment, and how things go!

[angel22_99]

angel22_99, I don't know much about optic neuritis - and specifically I don't know whether timing of treatment is more critical for ON than for other types of inflammation - but several years ago I was treated with IV steroids anyway even though it was "too late to treat" and I still saw a dramatic (although not complete) improvement. If you generally tolerate the steroids well (not everyone does - for some people the side effects outweigh the symptom relief) then I'd advise that you still push to be treated.

In my case, this happened back when I was initially being diagnosed. The actual symptoms started in July, but for various crappy reasons I didn't get an MRI until the very end of August, by which time the lesions no longer showed as "enhancing". I was told that steroids are most effective if started within a couple days after the symptoms have peaked (at which time presumably the lesions would have been enhancing on the MRI) and I was long past that point.

I still asked to be treated, and I got the steroids over 3 days at the start of September. This was at least 6 weeks past what would've been the optimal treatment timeframe. Still, by the end of the 2nd of 3 treatments my double vision and balance problems were *much* improved. I never recovered completely - and I wonder sometimes if I'd have recovered to a greater extent had I been dx'ed and given the steroid treatment earlier - but it was still a dramatic improvement from where I was before the steroids even though I started "too late".

This was of course just how it went for me one time, and the flare wasn't optic neuritis specifically, and I generally tolerate the courses of steroids pretty well. Your mileage may vary. But I wanted to chime in since my experience was is a counterargument to the idea that it's necessarily too late for treatment to help.

I do agree wholeheartedly with your plan to take at least a short leave of absence. With everything on your plate right now, the last thing you need is to add any additional stress or responsibilities from work. Stress is a huge trigger for me, and during the timeframe I described above I deeply regret not having taken some time off to just rest up and take care of myself. That is probably another reason that I did not fully recover. You are wise to prioritize your own needs at this time. I wish you the best possible outcome - please keep us posted on your MRI results, whether you go for treatment, and how things go!

Did you take oral or IV steroids? I seriously keep going back and forth on whether I should do this or not...

So MRI results are in and there is a new lesion on the right side of my brain that did not enhance. My doctor does not believe I actually have optic neuritis, however this lesion is most likely responsible for my vision issues--but no one can be sure. He thinks I may have had this lesion for months and as it scared over, it caused a gradual decline in my vision.

Because the new lesion didn't enhance my neuro doesn't think steroids would help, but malaholic, you spiked my memories because for my very first exacerbation, it took months for me to be prescribed steroids and none of my lesions were enhancing...my left arm and leg went numb that time and I got the leg back which is better than nothing.

I did tell my boss and HR today that I was taking two weeks off as of tomorrow. It was very hard and I can't believe I actually did it. The trick is going to be to really stick with it and not check email.

I also asked my doctor if I could get physical therapy and he wants me to wait a week. I still feel like I need to do something proactive to help my self get better soon. I am going to try very hard to relax during the day.

By the way, good news about the husband. They took the wound vac off today because his wound was completely dried out. Saturday the picc line will come out and Monday he goes back to work, YIPEEEE. Today he was able to drive me around to places so I didn't have to stress about not being able to see so well.

[malaholic]

Did you take oral or IV steroids? I seriously keep going back and forth on whether I should do this or not...,

I did IV steroids - IIRC it was basically 1 gram of Solumedrol via IV infusion once a day for 3 consecutive days. I've done this regimen twice and I tolerate it pretty well - some minor side effects like facial puffiness (gone by the next day), and some withdrawal aches & pains after the treatment stops - which I could potentially try to remedy with an oral taper if/when I have to go through the routine again. I have a friend though that simply feels awful doing steroids, so it doesn't work so well for everyone.

So MRI results are in and there is a new lesion on the right side of my brain that did not enhance. My doctor does not believe I actually have optic neuritis, however this lesion is most likely responsible for my vision issues--but no one can be sure. He thinks I may have had this lesion for months and as it scared over, it caused a gradual decline in my vision.

I'm sorry to hear you have new lesion activity. Has your dr. discussed trying a (new?different?) DMT? I didn't notice if you are currently on a DMT but if so it sounds like it hasn't been as effective as you'd hope.

I did tell my boss and HR today that I was taking two weeks off as of tomorrow. It was very hard and I can't believe I actually did it. The trick is going to be to really stick with it and not check email.

YES! It is so hard to let go of work-related stress in today's environment where you're expected to be always connected, always plugged in. There's a few days up front where you actually feel stressed just because you're unplugged. Stick with it! You can do it! And after a few days you'll get past that and actually hopefully be able to relax. (I actually left my previous job because of that whole "always connected" problem, but that's a whole 'nother story.)

By the way, good news about the husband. They took the wound vac off today because his wound was completely dried out. Saturday the picc line will come out and Monday he goes back to work, YIPEEEE. Today he was able to drive me around to places so I didn't have to stress about not being able to see so well.

That's great news - for him as well as for you!

Thanks for the update so far!

[angel22_99]

I have completely decided not to treat. Both my neurologist and my eye doctor think I am doing the right thing. I guess they are right.

I had an appointment with the opthamologist today and they did a several tests including a visual field test - which I feel like the vision in my right eye has gotten worse.

I'm not sure what really happened at this appointment...something about the opthamologist wanted to do a refractive exam, but I would have to pay for it (I have full vision coverage through VSP), but I couldn't use the VSP benefits on the same day as my health insurance? Clueless. I just left with no answers on my vision, just another appointment to come back next week.

I feel like all I'm getting lately are a bunch of doctors shrugging their shoulders. Is this what this disease is? Why am I feeling like I am in limbo-land again?

So update on work. I thought I had friends there. HA! I get that no one wants to "bother" me, so no one has texted, but this morning (yes, it's only been three days) I texted the group to ask a question about something and to give a quick update on my husband. I did mention that I was bored (my intention was that i missed everyone, because I DO!)...

And one of the girls texted me back personally saying that she wished she could be doing what I was doing (sitting at home), but she was too busy working on her exam. So I texted back that my work will still be there when I get back (no one is picking up any of my projects)...

Hey, I know it was insensitive to say that i was bored, but for all things good, I'm the one going blind here! A little "hey, how are you?" is all I really wanted.

I am honestly scared out of my mind right now. What if my vision never comes back?

I don't think some people have any concept of what this is like. Bitter.

[Jules A]

I feel like all I'm getting lately are a bunch of doctors shrugging their shoulders. Is this what this disease is?

Yes.

Hey, I know it was insensitive to say that i was bored, but for all things good, I'm the one going blind here! A little "hey, how are you?" is all I really wanted.
I am honestly scared out of my mind right now. What if my vision never comes back?
I don't think some people have any concept of what this is like. Bitter.

My opinion is we need to lower our expectations of others' empathy. I expect nothing from anyone, including family and then can be pleasantly surprised when someone goes out of their way to be thoughtful. This disease is impossible to fully understand, even for us!, and most people are so self absorbed with their whirlwind lifestyle that those who could use some assistance are overlooked.
If you need something specifically ask for it, insinuating is only going to annoy you further when others either ignore or don't pick up on your subtlety.

I'm not saying its fair or kind but it just is.