1 year follow-up MRI and neuro wants me to come in

[bubbles_04]

So its been almost a year since I was Dx with MS. Been on Copaxone for about 8 months now. Just had a check up at the neuro and clinically and I am doing great. Then got MRI done. Neuro wants to see me tomorrow to talk about the results. I'm so scared and I hate that I got a call at 6:30pm this evening to say "hey neuro wants to see you about your results tomorrow". It upsets me because now I have to wait a whole day to find out anything. It's going to be bad news as Drs don't call you in for good news.

I hate my MS!!! I hate that I have to wait to even know what the situation is!! I know this is not a question just looking for support and hugs to get to through till 4pm tomorrow.

[bubbles_04]

I'm way too sensitive!! Reading your posts made me cry... Thanks so much for all of your supportive words and for making me not feel so alone. MS is very isolating. Noone really understands it apart from my fellow MSers so thank you all so much. Alex I totally agree with everything you said and everytime something bad happens I panic about what else might be in the future, but I totally agree with you I should work on not worrying about the unknown :). I hope you are doing ok Laura???

I agree with you all! lets keep moving no matter how embarrasing it is :)

I read a great quote today "Worrying is like a rocking chair, its a good thing to pass the time but it won't get you anywhere." :)

Hugs to you all!!

[Lulu54]

I took the major fall three weeks ago in the gym with my student trainer, in front an entire audience.  I had to be escorted out by the student rescue squad and needed stitches and gave myself a concussion.  I haven't been back to the gym, yet.  That is going to happen next week - I finally feel like it won't be painful.Iknow I was quite the spectacle with all the blood and extra attention.

Karate, yoga, exercise - it's all good  and essential we keep trying, right?
hugs, laura

[jen673]

Im so glad you are doing well.  Sounds like you have a great neuro too.  My MS lesions are very similar to yours. I also have been on copaxone and still had active lesions one yr later.  It's been better the past 6 months. If the pill BG-12 gets approved, my euro and I agreed would e a good choice for me.  Hopefully that's soon.....I tired of doing shots. Lol.  

Take care and don't be embarrassed, everybody loses their balance!  At least we aren't letting MS stop us from doing the things we enjoy in life!

Jeny :)

[HVAC]

The trick is to learn to deal with uncertainty. I get myself upset so easily over the unknown. I finally learning with MS and Cancer not to think its the worst out come. Sounds like your Neurologist is a keeper.

As far as karate. I fall in yoga all the time. I do not get embarrassed anymore. I also fell trying to get on the horse. That was embarrassing. I was swinging in the saddle and landed on my rear. My instructor is so scared of me getting hurt she freaked out. I use to fall all the time when I rode as a kid. No one really notices. Everyone loses their balance in yoga, karate, horse back riding sometime or you are not trying to hard.

I am taking a free from falls class through the NMSS. They talk about how some folks get so scared or embarrassed they stop doing things they like to do. To me that is what is sad.
Alex

[bubbles_04]

Hi All!

Just wanted to update this thread and let you all know the Rebif is going well. I'm currently on 22mg as thats what my neuro wanted me to start with. So far no real problems, I do have more headaches but i also have alot of things going on in my life right now. We just moved house and are in the middle of packing, unpacking, doing up the new house, cleaning the new house and the old house and trying to get settled in. It's like a part time job :) It's fun though!!

I have noticed some muscle spasms here and there and i fell over at karate the other day, was rather embarrasing and upsetting. My left leg the one with the spasm issue caved while we were training. Like most things it set me back emotionally and i felt sad over MS again. I did fight back the tears though, stretched it out and got back out there.  

Fingers crossed for rebif :)

[debgen]

You ARE lucky to have a proactive doc who actually wants to meet with you right away in person. He sounds like he could be a role model for the many neuro's who don't take the time to be as patient centered. I know you are feeling anything but luucky right now but it sounds like you are lucky to have found such a good doc! I am sure everything is fine so please get back to all of us :) Hang in there!!!

(((hugs)))
Deb

[bubbles_04]

Thanks so much for all of your replies! I think I do have a great Neuro. At first, especially when he stuck a needle in my back!, I wasn't sure but now I know he's good. I think most neuros would of either called to give the news and talk treatment or had a longer waiting time to go in. He's really sweet. He also said he wants to see me in three months to make sure im getting along ok.

As for treatments he offered rebif or the other interferon, can't remember the name, but its weekly in the muscle. Figured I have the SQ injection down and so rebif is not such a jump. I am alittle worried about the flu like symptoms and liver damage. Hopefully with plenty of liquids and ibuprofin I'll be ok. I think the Doc will also order blood work to check on my liver. If he forgets, I'll remind him at the next check-up.
Also I remembered you were on rebif shell and I remembered you saying it was working and you had no issues with it! So I thought, hey maybe this can be me too!! :)

Thanks again everyone, glad I have this forum to come to.

[sllowe]

Good doc with a plan! Great questions to have asked the doctors! Though you were worried - You are one smart cookie :) And, are on the ball with your thoughts.

Rebif has done me super well!  I hope it does the same for you. It is strong and does have the potential to  stop this activity in it's tracks. My lesion load has not progressed, nor have my attacks. I deal with chronic problems from existing damage mostly.

If you type in "DMD users" using the search this communtiy feature you will see who is on Rebif. I'm sure you will appreciate the thin small needle and 3x's a week injection vs the daily.
-Shell

[Lulu54]

Those proactive docs need to be applauded - he's not letting you sit and wait for the next problemsa to occur.  It's great to hear about the healing lesions in your spine.  Lesions can come and go, being healed by our miraculous bodies.

There are several Rebif users here - but if you haven't already done so, search this community for REbif and you can read a lot in the archives on this as well.

hugs, L

[johnniebear]

Your Dr is proactive  and didn't waste any time having return to his office.  

Sounds like you have a comfort level with new treatment plan,  best wishes for you on new treatment..


take care
JB

[bubbles_04]

argh, " I AM thankful to have you all here though!!" can I blame MS for this?

[bubbles_04]

Hey everyone!, Thank you all for all of your lovely messages of support! They really helped me.

So the Neuro, he told me I have four new 2mm-6mm enhancing lesions in my brain. He also said my other lesions are getting better along with my neck one. Figured my neck one was getting better as I have no lhermitte's sign anymore. He suggested I change treatments to rebif and I agreed. I asked him what he wanted to achieve and what would be considered exceptable on the MRI. He said four new lesions is too much. One he would think maybe lets stay with copaxone. I'm ok to switch treatments and I feel great right now. I feel silly for worrying so much... sorry about that

Thank you all so much for your kind words and support. It means alot to me. I know I'm not always here and I think thats because I like to not too think too much about my MS on a day to day basis. I'm not thankful to have you all here though!! really it means so much to me. It's so helpful to have people that understand what I'm going through to talk to.

Hey maybe if your on rebif you can give me some pointers? I'm looking forward to less shots per week :)

[Lulu54]

Bubbles, where are you??

[Lulu54]

I take this as a sign that you have a really good doctor who is engaged with the patients - perhaps there is little or no change and maybe not.  Knowing either way is what we all need - adjustments can always be made to your treatment plan.  

From the timing of your post I would assume tomorrow is now  - I hope you'll check back in and let us know your status.
hugs, L

[sllowe]

A whole day Bubbles girl?

Come on now - you can do this :) Chin up girl.

-Shell

[kwarendorf]

As ALex said, some docs like face to face discussions, regardless of what is being discussed. You say you feel great. That's what is important. If you had new lesions, or a progression of the disease, you would have felt it. MRI's only confirm what your bidy is telling you. Your body is telling you "I feel Great" :-)

Kyle

[HVAC]

Some Neurologists just like discussing MRIs in person. Mine does and my MRIs have all been the same as the one before. Try not to worry. A friend told me everything she worried about hardly came to pass. Other things she never thought of happened but not what she worried about.

Alex

[doublevision1]

Your anxiety is understandable.  Best thing for you right now is to try to do something to take out mind off of tomorrow.  I know, easier said than done.  Maybe have a glass of wine and watch some TV or play some Scrabble.  If you take the occasional sleep aid, maybe tonight is a good time to take one so that you're not tossing and turning and letting your imagination get the best of you.  Also, although I agree it is curious why your neuro wants you to come in on such short notice, remember that the most important thing is how you are doing, and you are doing great.  MRI is only one part of the picture.  Some people have many many lesions and almost no symptoms.  Some have just a couple strategically located ones that render them disabled.  That's one of the many confounding aspects of this disease, the frequent lack of correlation between lesions and symptoms.   My neuro has said to me several times, "I treat people, not MRIs".  

Try to take some comfort that you have a neuro who is watching you carefully and diligent enough to follow up so promptly.  What will be will be.  Our worst worries are rarely realized.

Sleep tight and come back tomorrow to keep us posted.