Thanks and a little update on this relapse

[Sarahsmom46]

I'm back online and am so happy I can check in on you all and also let you know what has been up with my relapse.  Ren was kind enough to let you know earlier this week, and thanks to you all for thinking and calling to cheer me up.

I started noticing relapse symptoms after my recent illness. I thought I'd wait a few days to see what would happen and then when each day was getting worse - not better - I called the doctor.  I couldn't feel anythning starting from mid-thigh and had several falls.  My doctor did a direct admit to the hospital ande thankfully blood work and MRIs showed that IV-SM was needed.  

I am glad that I got this treated quickly no delay at all, but disheartened that the MRIs showed 2 new lesions and 2 suspicious lesions in my spine.  The head neuro here says that 2 relapses in less than a year means I'll need to look for another DMD. I am currently on Copaxone and had hoped it would be do great on it, but I guess this is not an uncommon thing to happen.  

I have so many feelings at this point and am trying to process it all. I had been stable up to this point and that helped me stay in denial that things could get worse.  But at the same time I am relieved that I had worked hard during my last relapse to lay the foundation for what I need to do to take care of myself if and when a new relapse occured. This is the very reason that I'll be in rehab only a week versus several weeks as in the past.  MS is so unpredictable but I guess knowing what to expect and what I can do for myself is somewhat empowering.

My doctor thinks I'll make a good recovery from this relapse since we got the inflammation down pretty quickly.  I am grateful for that news.  

I just wanted to share this with you guys. Thanks again for all your support.

Hugs to you all.

Julie

[Sarahsmom46]

Thanks so mtuch Katie. I am being a good girl in rehab and told the therapists today to make me work hard. I have to be back at work by next Monday as I'm in a non-pa status right now.  

By the way, the doctors came to see on rounds this morning and my attending neuro piped up with saying that he thought I should give consideration for gilenya.  He said I would be a good candidate for it.  I'll be following up with his colleague, my MS neuro in a few weeks to make the adjustment to a  new med, gilenya or something else. So many things to decide right now and it is a little overwhelming, but Ithink I have it under control.  

Thanks again so much for your encouragement.  

Julie

[katie4242]

Sorry to hear that you had to go through this.  Hopefully they will change your meds and you will be relapse free for a long time to come.  If they want you to take Gilenya, I say go for it.  It is supposed to be better, and I bet they will find out that it is safe.  Take care and be sure to do everything your physical therapist says (ha ha - I am a PT and I know how annoying we can be :)

Katie

[rendean]

Dear Julie,

I'm glad you opted for short -term rehab! I think it will make a smooth transition to home and work easier.

You are still in my thoughts and prayers.
Many hugs,
Ren

[Sarahsmom46]

You are all so wonderful, truly compassionate. Thanks for the kindness believe me it realy helped make my heart sile.  

I am now in the rehab unit. The most important reason in the decision not to go home is the complication that I don't drive and I live alone and trying to see if my legs are going to hold up in an environment that may or may not be that safe is worth staying a few days in rehab. So, I am here for now but should be discharged by Friday or Saturday. I'm optimistic about this.

Lu, Lisa, Paula, Val, Kelly and Sarah I appreciate your well-wishes.  Our relapses, whether they are mild or severe are still relapses kinda set backs and I recall you all going through various ones of your own and how you got through them.  Just having other people we can share these experiences is so amazingly helpful.  

Dearest DJ - You won't believe this, but I have thought about you several times during this hospital stay.  I remember what Lu was telling us about your last MRI and how bad your spasms were. It made me think to take my zanaflex before they took me in and thankfully it helped. We learn so much from what others experience here so the information helps.  Oh, and I am following your orders - relaxing - atleast until PT starts tomorrow.  :)

Opie - The neurologist's here are very keen on patients trying gilenya.  My MS neuro had been talking to me about it for several months prior to its approval and this may be the drug they want to run by me. I'll be interested in hearing your experiences as I am not sure yet how I feel about it.  I know that there was some discussion between the doctors doing my rounds that day where the attending said that they find that interferons at this stage are not that much more effective than the copaone and that they like to be more aggressive with some patients in the next tier of drugs.  I don't know if they were talking about my case, for sure, but why would they have brought it up in front of me. Then again, this is a teaching hospital.  I hope you are doing well on the drug and can't wait to hear more about your reaction to it.  

Thanks again you guys. We are such a supportive group and honestly, i tell you all more than I feel I can even tell my own family.  What we share with each other is our reality and that is sometimes very hard for our families and friends to handle.  

Love you all so much.

Julie

[opie74]

Good to hear form you!  Hang in there.  I am still on the taper-down with prednazone.  Wen I get to the "los"doses (30mg) or so is when I start to get moody and cry-baby!  If you need a tear shead, just let me know... :-)

I had 3 relapses that required solumedorl in the year before I ws preg.  That is why I am trying gilenya.  Praying that you find the best medacine for you.  Speady recovery prayers too!

Opie Ann

[ShadowsSister]

I am so sorry to read you had a relapse, but relieved to hear you acted quickly.. You are a very smart lady...
You are in my Prayers and I know you'll keep us up-dated as to how you are doing when you feel up to it... Hang in there, try not to stress too much, and rest, rest relax, rest some more..
Sending you special hugs on the winds {{{{{~!~}}}}} DJ

[Guitar_grrrl]

Julie,

I'm so glad you're feeling better.  Sending good thoughts, and wishing a good rehab experience.  
Big Hugs!
Lisa

[anon07072023]

I'm glad that there was no delay in your treatment. Too bad the Copaxone isn't working for you.  I hope they can find something else that works for you.

Thanks for keeping us updated.  I hope you feeling better soon.

Good luck,
Kelly

[figuerpa]

Julie,

I am sorry that you are in a relapse but I am so glad they treated it quickly and that you are on the road to recovery.

Hang in there, you know we are all here rooting for you

Paula

[Sparkysarah]

Good to hear from you and that you have been treated quickly and you sound fairly positive. Just take time and give your body what it will need to heal and recover.

Keep us posted

Love Sarah x

[Valerie64]

Best wishes Julie - stay strong

Val x

[Lulu54]

Julie are you in rehab now?  I was guessing home since you have internet access but have to change my mind about that now.  

Wherever you are, I am so glad you got the treatment quickly this time and are out of the hospital.  That private room and all the attention really isn't what it's promoted by all those glossy brochures and fancy newpaper ads.  

Know that you have a lot of folks here rooting for you - making these next choices stink but I know you will do your research and get on with treatment of some sort.  

hugs Lulu  

[HVAC]

I am so sorry you are going through this. I wish it were not so. You will have to process this. I hope you do recover quickly. I kinda thought more was going on with you back in November now you have proof. Hang in there.

Clara Bell the Horse says hello.

Alex