Log in
My MSAA Community
3,805 members7,479 posts

So frustrated over DMT & symptoms

I have tried to stay positive when possible. My latest frustration..since January I've had numb legs, back pain & slightly burning feeling, brain fog & numbing. I was in the weening off Tysibri stage, only using Copaxone -3x's a week & getting 3 Solumedrol infusions every 4 wks. This for me was a disaster because I work full time & had to call off more than I was able to work. Then started Rituxan last month, had 1 reaction after 75 minutes and then was able to complete the infusion after more Solumedrol & Bendryl. I felt my symptoms resided. Thought I could go back to work as I was taken out of work since end February after I saw my neurologist & my symptoms were visually seen by them. Not my hot air leaving a message about my symptoms for the nurse on call that will either get back to me that day or the next business day. (That's a issue, as I onlycall when I waited too long. My fault, but I have the mentality that maybe the next day I will feel better). Now I tried going back to work, this past week. I lasted 2 days. The anxiety I had in those 2 days set off ALL my MS symptoms. I messaged my neurologist thru patient portal. Got a response. Now I'm back out of work for a few weeks tentatively. I got infusion of Solumedrol, yesterday. It was suggested to me..anxiety medication. I've had lots of anxiety at work over the last 25yrs at same company. NOW, this anxiety leaves me with jitters when it happens frequently. I have an appointment with my neuro which I have lots of questions to be answered on May 16th. I researched difference between Rituxan & Ocrevus. .I wont go there, as this post is long enough. I would appreciate hearing about experiences anyone has had regarding increased anxiety over time compared to when 1st diagnosed

20 Replies
oldestnewest

Oh, I'm Jcv positive. & continued copaxone while Rituxan.

6 likes
Reply

I've been on Rituxan now for a few years and just was declared stable for the first time since my dx in 2007. I hope you are able to stay on it since it will take between 1-2 years to realize the full effects of the Rituxan. I would be curious to hear what is your take on the difference between Rituxan & Ocrevus.

1 like
Reply

Thank you for the feedback. I will probably stay on Rituxan. I'm the type of person who gets impatient with results. So now with what you said, I have to be patient. At least I know now. What I read with the difference between Rituxan & Ocrevus. Don't quote me but...Rituxan has been around alot longer but never officially approved for MS. But what it has been approved of, for autoimmune diseases that it can be a MS therapy. Ocrevus as we know has been approved. Rituxan is made with rat & human counter parts. Where Ocrevus is made with just human. Also, with Rituxan, your immune system could build up blockers that the drug would not be effective anymore. ( that's a possibility ). Where this would not happen with Ocrevus. It's all a big debate, as some say these 2 drugs are the same & the patent for Rituxan is or was coming up & then they created Ocrevus to be able to charge more to the patient to get it. I'm not a scientist or doctor but this is what I read about these 2 drugs. You know I remember the good old days, when you were sick, you'd go to the doctor, they'd give you a script, you'd get it filled & get better. Now, you go to the doctor, they yell you about this medicine or that medicine..now you make the choice after figuring out what's best for yourself. Craziness.

1 like
Reply

thank you for your reply. You're right on for what I know of the differences between the two. My neuro has not suggested anything other than the Rituxan {on the market for 20+ years} I guess if it stopped working I would start on Ocrevus. But now I am okay with it. I started to notice some changes after my second full treatment. Better results came after my 3rd treatment. Now that I'm stable I expect to stay even with where I'm at. I hope the best to you for your experience ~terry

1 like
Reply

So going back to work set off all your ms symptoms again? Have the symptoms gotten better now that you are off work again? Obviously your job is stressful to you, which is bad for ms. It is only natural that your anxiety has increased if you are worried about keeping your job. Have you looked into disability?

Anxiety is very common with ms, regardless of work. Perhaps you should try an anxiety med to see if it helps. Getting solumedrol so often must be rough, depending on how it affects you. Just curious, were you getting solumedrol every 4 wks because you were weening off tysabri?

6 likes
Reply

Thank you for your insight & questions. Yes, my job has always been highly stressful. Either I went back to soon or my system isn't handling the stress like it used to. Yes, my head felt like it was on a vice grip, blurred vision my eye sockets hurt. Legs numb, back pain. Well, for 2 weeks after Rituxan, those symptoms resided. I was a nervous wreck when I worked those 2 days, shaking & everything else went crazy. I'm for the most part calm when not working. I have recently wondered about disability. At what point does one determine that it's time to stop. I am thinking, yay, I could take meds for anxiety broght on by work to continue workin ( which sounds rediculous to me), or highly consider disability & nor have to take meds for anxiety. Hmm, did I answer my own question.

I can handle Solumedrol cause it helps relieve me of the the symptoms I described earlier. I got the 3 day infusions in Dec, Jan & Feb, every 4 weeks & yes, this was because I was being weened off Tysibri.

5 likes
Reply

I had several years of anxiety/panic attacks before ms diagnosis that actually sent me to the ER as I thought it was my heart. Still get palpitations frequently but not as bad.

It may help you to try an anxiety med while you are going through the process of deciding about work vs disability. Is short or long term disability available to you through your work?

I was talking to my neuro PA yesterday about disability. If I were to file for SSDI, I would lose my current health insurance until the SSDI is approved, so I could be without a DMT unless I could get help through the pharmaceutical company or grant. Not something I want to risk right now so am holding off on filing,

1 like
Reply

I'm going to discuss the meds with my doctor, including the ones for anxiety.

Being proactive, I looked up information about SSD/SSDI. After doing so, I cried. It's so rediculous what we have to go thru, full circle. Then there's the chances you can be declined. Try try again. I think pending on how my doctors visit goes, it's an option. PIA but option.

3 likes
Reply

MaryMargaret. My anxiety is pretty bad, affects my speech, of anxiety creates nerves roaring. The Prozac of the worlds are ok, but I started different Adivan, Zanex, and valium. Anxiety can be extreme and for no reason ... MS one of the wonders but important to get under in control bc that's when some people withdraw and get depressed, need SSDIs... Hope helps try relaxation, but what Drs and people don't understand its not just anxiety, its your nervous system.. This disease you go in with options or 'i discussed with groups' to your Dr. The wonders of the disease everyone reacts different but NO SETTLING!!! Sometimes I just accepted .. For years before my dx, now I speak up. With facts too keep tract of your anxiety, scale 1-10 everyday, if you have triggers, how bad it affects your life, Pininterst (sounds silly) but have free printables for everything!! Although its more, details .. Real dates, time, its amazing how the Drs hear you. You have to be in charge, even though I wish I could see him and say I'm great.. Track your days, I start with hours I slept, if I was up, any triggers during day. It will also help decide if you need certain meds, some work some don't. Use it as your personal daily journal, summarize it for them, they tend to take attention, helps them, without hearing anxiety is worse. I learned that having that also takes the emotional and physical exhaustion.. You can send message I can show you some helpful journals/trackers.. Anxiety is real and NO one should minimize any part of this disease !!! Everything we do for ourselves will help all of us!!!

2 likes
Reply

Very informative, thank you. I understand the journaling. When I went to my appointment in Feb. I sat down went back & journaled. I really think, now, that was the 1st time I had their full attention. Ironic you would mention that.

If I ever went into a doctors office cause I had something going on, it is real. If it was ever minimized.... then it's time to look for a new doctor. I don't mess around. If it's anyone in my personal circle that doesn't get it, then I just dont tell them how i feel and communication usually becomes lesser. It's my health, my life. My hubby-care giver, is so frustrated with this all, hates to see me go thru all this.

1 like
Reply

I agree that looking into it is a good idea. Don't let it scare you, though. Take good notes and give them as much information you can when applying. I put it off for a long time, too, until I was finally pushed to do so. However, when I did apply, it went through immediately. I was able to coincide short term disability, or whatever it is called, through my work with the waiting period to start getting SSD so I never had to go without any income. Yes, we have to jump through hoops but it's all worth it in the long run. Again, I suggest keeping notes of what people say etc. so you have references you can always go back to. Good luck. I think you and I are probably the same age...if your name has anything to do with your birthday (1966).

3 likes
Reply

Tink, you are reading my mind.lol I'm so glad I posted this cause the feedback has been very helpful. & comforting. Correct about age.. just a number. Right.

2 likes
Reply

You are absolutely right. It's just a number. I'm glad you are getting some helpful feedback. That is a nice thing about this community. There may not be somebody who can relate exactly to everything you are experiencing but there are people who can relate in different ways to each of the different things we are experiencing. I'm not sure that made sense. I know what I'm trying to say. Hopefully, you were able to decipher it.

2 likes
Reply

You made perfect sense! All hood. Lol thanks for being there!!

2 likes
Reply

Hi MaryMargaret1966 I don' know about anyone else, but my anxiety greatly increased with my MS. But I have never taken to change well. And Let's face it. MS? That' a change!

Welcome to My life Xanax. 🙃

Talk to your Health Care Team and see what they say. I'm sure the steroids arnt helping you either.🙁🤗

Steady breathing is the only thing I can do to try to help it.💕

J🌠

2 likes
Reply

Thank you for insight. MS definitely brings on alot of inconvenient health issues. I'm ok with most changes once I have a chance to wrap my head around the change. Ok, having said that, by NO means will or have I accepted MS, this "gift ", (that some have referred to as in previous posts, I would have no problem RE-GIFTING" it back to the one who gave ot to me). I have heard, God doesn't give you more then you can handle.WHAT, WHAT WAS HE THINKING!! I ask myself. No please I don't want any preaching too. Thanx anyway..sorry about that rant.

As much as I'm tired of talking to doctors, it's time to re-think the game plan for meds & work.

I'm breathing....

2 likes
Reply

Oh, I truly understand. Have done alot of yelling and screaming myself! And the, wtf did I do to deserve this! Oh yeah and the , seriously, havnt you kicked me enough already?? With a hole lot of swearing!!

So I get it!🤗💕

Your not alone.

J🌠

2 likes
Reply

THANK YOU SO MUCH!! You sounded like me! As I'm reading what you wrote, I read it more then once, wanted to "like your post" a billion times, but it won't let me. Lol Made me smile.

2 likes
Reply

It's alright to be frustrated. This is frustrating!! We can't be positive all the time and that's ok. Sometimes what we are dealing with stinks...and that is putting it nicely. I think I'm more anxious than I used to be in a lot of ways. To me, it's because I can't control ANYthing. I hope your neurologist is able to help you find some relief and get you on a path you can be happy with. Best wishes to you on this often miserable journey.

2 likes
Reply

Thank you! Totally agree with you.

2 likes
Reply

You may also like...