I feel like I'm falling apart

[kittysmith]

Hello, my MS friends. As my title states, I really feel like I'm falling apart. I have been suffering from radiculopathy since December 1st. It's the fifth time I've had it. It's a pinched nerve in my neck and a herniated disc. Not MS related, but has been exremely painful. I am having spine surgery on Feb 15th. They will be removing 2 discs and placing a titanium plate. Terrified of someone messing with my spine, but the pain is unbearable.

I've been dealing with getting ready for surgery. Now, to add one more ingredient to this mess; I have been on Copaxone for almost a year. Other than injection site reaction, everything has been fine. But now, I've begun having horrible side effects. Dizziness, sweating, chest pain, nausea, and reflux. It's a horrible feeling for someone who already suffers from panic attacks. In the midst of all this, I now have to change to a new DMD.

I'm struggling through the pain at work (3 12 hr shifts per week) so I can save my sick hours for post surgery. I may be out of work for a month or longer. The pain is awful, but I have no choice but to keep going as long as I can.

So, in pain, surgery coming up, and now, a new DMD. I feel like I'm under a pile of bricks and I can't get out. Everything is just falling apart all around me. Ugh.

Thanks for reading my rant. Just need some prayers and good vibes headed in my direction. I gotta be strong and soldier on despite the pain.

[Myoak]

Hello kittysmith,

I am so sorry that you are facing multiple issues at this time. It appears Copaxone may not be as effective as you require in order to continue working. What you described relative to Copaxone is not uncommon, as you are likely aware.

Again, I refer to the "Great results so far on Tysabri" thread under Tysabri in the Medications & Treatments forum. A surgeon taking Tysabri started that thread and credits that med for resuming his career.

Honestly, I see nothing comparable in any other presently approved DMT for MS. Some of the highly effective meds like Ocrevus may slow progression, however, you may still be too fatigued to work the shifts you work. Studies prove the less effective DMTs clearly lead to conversion from RRMS to SPMS years earlier than the highly effective DMTs. Plus, the crappy side effects which are common, as you are experiencing.


If you don't mind, I will mention something quite minor which has at least a remote chance of being helpful... one person I know very, very well has gotten relief from neck pain by using a 'my pillow' which are advertised all the time. I'm reluctant to mention it because I don't want to appear as though I endorse them, I do not. All I'm saying is the pain she experienced was due to neck vertebra issues and using the new pillow that pain has resolved. Of course, it may be coincidental and it may be temporary, who knows? But if something as simple as a pillow may help lessen pain for you, I want to mention it.

[Jules A]

Sending prayers and good vibes your way.

[kittysmith]

Thank you, Myoak

Thanks so much for your suggestions. I did not realize that the symptoms I had were common after you had been on the medication for a while (until my husband Googled it, lol). The chest pain scared me to death. I never want to feel that way again. Triggers my anxiety/panic attacks. I do need a new pillow. I will definiely look it up. At this point, surgery is my only option, but it wouldn't hurt to have a new pillow to come home to. I spoke with a nurse at the MS clinic. They are going to send me some options for an oral or another injectible. I have been really unsastified with Copaxone. I never had a problem with Avonex, but I had a new lesion show up, so my Doc wanted me to switch DMDs. MS complicates everything.

[Mamabug]

I'm sorry, too, Kitty, that you are dealing with multiple challenges.

Regarding My Pillow, my husband tried it once and promptly returned it because it made his neck worse, not better. Thankfully, it can be returned for a full refund within 30 days if not satisfied, so it doesn't hurt to try it.

I hope you get some relief, soon, from everything that is going on.

[Seasha]

I'm sorry too that you are in so much pain. No Fun! I'll be thinking of you, kitty and sending good thoughts and prayers for your upcoming surgery! What will your recovery time good like afterwards? Do they suggest some form of PT?

My mom had back surgery at the age of 88 and recovery was complete. (She also tried a My Pillow and hated it.)

Hope you can figure out which med to switch to. This link may be helpful in making a decision - https://www.msworld.org/forum/showth...comparing-DMT-

Take good care

[KoKo]

Hi kittysmith

Wishing you strength and courage!

Good luck with your surgery and relief from the pain.

Prayers and good vibes are coming your way.

Take Care

[Angel76]

You are Not alone

I joined MS world because I think it’s so important that we encourage one another and pray for one another!
Kitty, you are not alone! I know, if most of us who suffer on a daily basis, would admit that this disease can bring you to the lowest of the pits.
We are warriors and not just anyone could go through this battle
I just keep my eyes on Jesus and I know He’s with me! He comforts me, He brings me peace and restores my Soul. The book of Job has brought me sooo much comfort.

Please forgive me if I’m not to good at this yet but it’s my first post and I chose your story.

God bless you Kitty and much prayers for you!

[marti]

Hi Kittysmith. First of all your post really sounded a bell for me. When I was on Copaxone I started having weird reactions too. About 20 minutes after the shot I would start shivering uncontrollably and I wound end up curled up in the fetal position on the couch for about an hour. I finally stopped taking it with the doctor's permission. Haven't taken any DMD's since.

About the radiculopathy... I've read up on that because I believed I might have it going on for a long time. I never brought it up to the doctor so I'm not sure if that is my problem. But I appreciate hearing about your experience. I really hope the best for you with your surgery. You may have convinced me to talk to the neuro about it.

I'm sorry I don't have any advice, but I do care and will always listen to your posts.

[pennstater]

Kittysmith - sorry to hear. Sometimes the old addage "when it rains, it pours" holds true. Kudos for continuing to fight on. I am sure your surgery can't get here quick enough for you. Lots of luck.

[kittysmith]

Thank you all so much!

Sorry. I haven't had a chance to revisit my thread. You guys are amazing. I appreciate all the prayers and good vibes. I had to come back to work so I didn't burn through my sick time. I'm sitting at my desk with my arm propped up on a pillow and wearing my neck pillow. I am a sight to be seen. Lol.

I wish I could just stay home until my surgery in February. But, I gotta keep going. My husband said after all is said and done, the fact that I continued to work through the pain makes me a official "Bad A**". Not sure if there's a trophy at the end or even a tshirt.

I've decided I'm just going to do the best I can. I'm gonna smile when I don't feel like smiling. I'm gonna laugh as often as possible. I'm not going to live in fear of this procedure. I'm thankful they can fix it. I realized that dreading it wasn't going to make a difference.

It means so much to have people who can relate.

[IntoDust]

Not sure if there's a trophy at the end or even a tshirt.

Even if you don't get a souvenir at the end of this, you will get major respect.

I'm not going to live in fear of this procedure. I'm thankful they can fix it. I realized that dreading it wasn't going to make a difference.

I think that's what you have to focus on, the fact that it can be fixed. It's not an easy thing to prepare yourself for or to go through but in the end it'll be worth it.

Radiculopathy is horrible and there's no other way to say it. I have it in both legs and have been going through a really hard time with it as well, so I totally get where you're coming from.
I also have to change DMD's, so once again, I feel you!

I don't have any wise words of advice for you as I'm still trying to figure things out myself but I wanted to let you know that others are here and ready to listen. We hear you and sincerely hope things improve for you.

[Jules A]

My husband said after all is said and done, the fact that I continued to work through the pain makes me a official "Bad A**".

True story!

[MyGirlsMom]

Changing Meds

Kitty smith, can you wait to try a new med until after your surgery? You are much braver and stronger than I as I wouldn’t be able to handle that much in such a short time period. I am sure it would be ok to take a month or so to get through the procedure and then change meds.

Best wishes and prayers for a truly successful outcome on the procedure in a couple weeks. And do keep us posted!!