Neuro check up - emotional rollercoster

[bubbles_04]

Hi all,

It's me again, so I had my follow-up MRI of brain, cervical, thoratic, lumbar spinal cord. Then a few days later I picked up my MRI CD. I knew I was seeing the Neuro the week after and wanted to be prepared. I had not looked at one of my MRIs since I was Dx back in April 2012. I had two MRIs after that before my fourth one recently. So, I decided it was time to jump off the denial train and pick it all up. I looked at the radiologists comments and then looked at the scan. I then made a powerpoint, with my brain on copaxone vs before and then my brain on rebif vs copaxone (Know such a geeky scientist). Seems Rebif is working and when I visited the neuro he agreed but wanted me to have another MRI in 3 months to double check, he wants to be sure (I love my neuro for that :)). From most recent MRI no active lesions, two new in the brain and two in my thoratic cord. One of those cord ones, I know came when I was off copaxone before I was on rebif. I had a big attack in feb/march of this year.

This all sounds like good news, However I am very depressed.... I hate having my neuroloigal exam. I spend most of my life acting like MS is not a big deal and I'm fine. I am fine, for the most part. I do karate still (badly though), I work, I work on my house. No one would even know I have this beast. I can't hide it from the neuro though, he see's right through to the damage. My reflexs are all weird, off, hyperactive etc etc.... just not normal..... of course they are not normal... I have MS. Since my last big attack in Feb my left leg has been alittle weak, but i still go to karate and do so much stuff that I feel I'm normal.... Neuro " you are throwing your left leg abit".... damn he caught me again..... I even practice for the strength tests with my husband because I want to beat the neuro. I want to win, I don't want to lose to MS. Whenever the neuro asks me how I'm doing I say fine, but am i fine?? Is this part of my elabrate cover up?

It's been almost two years, why am i still in denial? How can I know so much about MS, be constantly telling my husband it's progressive and I'm only getting worse, and STILL be in denial??? Maybe denials good, its a coping mechanism, like posting and talking to all you lovely people. Maybe I should be less hard on myself. I just hate getting set back after visiting the neuro.....

Sorry I'm not done yet..... :( A little more emotional junk and then maybe I'll refocus myself again... I also, as some of you may know, want to have a baby. I was planning to start now but neuro wants me to wait 3 months and make sure the rebif is working. He's right, I know and I was thinking that I wanted to do the same thing after seeing the MRIs. It looks good but I'm not 100% sure. He said he doesn't want me in a wheelchair. Me either. So I will wait and see if the rebif is working. I was stupid to get my hopes up over baby making. I'm not even sure if baby making would even be fair to the baby made? Neuro on this told me to go for it and not worry (I really do love him). I know 3 months doesn't sound long but I waited a whole year already.... plus now my SIL called me to say she trying (why am i gutted about that!?!?).... I know I'm being a whiny little baby today, so I'm sorry, I'll snap out of it soon and go back into denial...

Ok more sensible stuff now. I think my Neuro is looking to see no new lesions... is this normal to want to have the lesion load stop increasing on a treatment? Am I getting my hopes up to high to hope that maybe we can stop/slow my MS? He said my eye is still slow to react and my left leg is weak... do I have any hope of these things getting better??
Can anyone tell me there story of progression with MS? Like over a 5-10 year course? I still feel like I know nothing.

Sorry for the long, whiny message, I guess I just needed to talk to people that understand my feelings.

Bubbles XX

[Millsinc]

Glad that you've bounced back! We all have our down days and nothing is wrong with it. Vent whenever you need too, don't keep it inside. We're all here for each other.

~Hugs~ and glad you've bounced back.

[bubbles_04]

Thanks everyone for replying. I agree Sarahl2491, Alex's note made me cry.
Alex you are so strong and your advice really helped me.

"True contentment comes from playing the hand you are dealt". Do what you want to with your life. This will be my new life moto. I shouldn't look at other people and compare myself.

Poppy7402 - Thanks for your words of support, you are right, whats three months? If my SIL has a baby first think of all the wisdom she'll be able to give me, maybe she'll give me her old baby stuff and ofcourse I get baby experience before my own :).

supermum_ms - Thanks for your supportive post. I really thought about what you said. Am I really hoping MS dx is wrong? I don't think thats true because I know I have MS. I have ticked every box for MS, I am gold standard RRMS. My Dx was very fast and easy, I never had a limboland period. I look at the MRIs to have a better understanding of it and to see my own progression. I'm a researcher (in myopathy though) so the researcher in me must examine the MRIs..... hahaha..... but there is some truth in your words..... I am hoping for a mild course of MS, I hope I'm a lucky one that lives their life with little MS upset. I think a lot about the stats and my potential prognosis... I read being young, having only O/N and sensory in the beginning are signs of a mild course. I want a mild course, so badly, so that's were my denial and lack of acceptance sits. I fight because I want to believe I will have a mild course. I think when the Neuro does his examination and he's noting the neurologial changes in me, i feel scared.... I want to be clinical in my thinking of my MS, but it's hard not to be emotional.

As for the DMD... I just don't know what my neuro is expecting, he told me he wants the MS to no longer be active.. IE no new lesions.... but I am worried thats too much to ask for.... Who knows.... guess I'll have to wait till jan :)

Millsinc - thanks so much for posting words of support. I really feel better today. I think I needed to go to my dark place for two days but I'm back to normal today. Back to coping, fighting and living my life to the full. I am so thankful I am still very mobile and able to still even do karate (even if i am terrible at it ;)). I'm so grateful for that and I will focus on the positive things in my life.

Again thank you all again, I always emotionally relapse after seeing the Neuro. Even though I know I have MS, but I am in denial most of the time. Mainly about the seriousness and progression of MS. Normally I am only down for a day or half a day. This time it was two days. I'm pretty sure its because I didn't look at my MRIs and had three to "investigate" at the same time. Seeing the leisons, reminds me its all very real. Then I also really want to start a family, 30 is lurking on the hill next year... I'm ready for it... but after looking at my MRIs my first thought was "looks like Rebif is working but I need more time and follow up MRI to be sure". Neuro said the same thing and so thats why I completely agreed with him. I could of said "NO neuro I'm having a baby now!!" but I really agree with him, we need to know if rebif is working for me. Whats 3 months after all??

Again thank you, I've bounced back today :) .

[SarahL2491]

I think we all float in and out of denial, I know I do.  I also love my neuro and I know he sees things I am ignoring!  But that's what I pay him for and I give him the "control" on that because he knows more than I do. He certainly saw thru my last visit when I said I was fine, just tired, and he grinned and said no, you are not and we need to fix this.  Amazingly, a month later on new meds, I do feel much better.

MS will always be there as your BFF that you do not want.  I have days when I forget I have it and days when I can't forget I have it.  Alex has certainly given you good advice, we all admire her for her wonderful outlook, I, myself, gain such strength from her.

Hang in there, each day brings a new chance at a good day!

[Millsinc]

Hun, feelings of confusion,  denial, sadness yes comes with the territory initially but then we have to get to the point where we accept this thing and make a resolve, are we going to beat this thing or let it beat us?!? Where I'm at I have only one drug option available to me, a very impersonal neuro(haven't been to him in month's and don't know if he is aware and he's not going to call and I can't call him) MRI scans that cost thousands (don't know when last I had one), insurance not covering my MS treatment and anything related,  I feel the changes in my body everyday...the weakness, off balance,  increase pain etc, but everyday I wake I thank God for life that day, that I'm still mobile and ask him to get me through the day in as minimal pain as possible.  I keep smiling, surround myself with positive folk's like this group and all I can to stay positive and as normal.  

Don't let MS dictate your pace and control your life. Slap it each day and remember you have control of it. MS is an unwelcomed tenant in our living space...our body. We may not be able to evict it but we can control it and get it to conform to how would like it to treat us.

Be kind, honest and fair to yourself, to your body and mind and show MS that you're in control. You'd be ok and we are here for you.

~Hugs hugs hugs~
Tricia

[supermum_ms]

Hey babe,

Is it possible that your dread of neuro appts, practising, trying to beat the neuro tests, out wit your neuro, saying your fine, acting like MS isn't a big deal, checking lesions etc etc is all because you are 'unconsciously hoping' for MS to be a mistake? So in this moment you are dealing with denial and not doing as good as you make out or as accepting as you'd like everyone to think or feel you are?

You have an understandable right to feel really upset and annoyed that this bloody disease is making your decision to have a baby, more distressing and harder than other women! It's possible that your need to be a mum asap, is making you face the reality of MS, before you're really ready to face it. Having to wait before getting pregnant, could be making MS more real to you and that's understandable but if that even remotely true, it might be a little soon after being dx to be making that decision.  

If there is an expectation of zero lesions being on a DMD, then its not reasonable, research supports a significant reduction of relapses and MRI lesion in comparison to those not on a DMD but to stop it completely would be beyond expectations. Keep in mind that improvements are very possible but again if the expectations is to recover completely, to have no evidence or no abnormal neuro tests of lesion activity, then i think you're aiming far too high. Neuro plasticity is well worth looking up but if your aiming for normal, i'm sorry but it will only pull you down into spirals of depression, each time you have to face your truth.

My story wouldn't be helpful because it would be one of what happen's when you don't do DMD's to slow MS down and you only need to read about MS before DMD's existed to basically know my story. But I want you to know my kids have special needs so not your typical children, and it would of been harder to give them everything they needed, if i was like i am now.............even if i'd had a crystal ball that told me everything before it happened, I would of still had them anyway!

Hugs..............JJ        

PS be kind to your self!!

[Poppy7402]

Three months to wait to try for a baby can seem like a lifetime, but you've already waited a year so it's not too long now.  

To turn it into something positive and fill it in, you maybe pick a project to undertake.  You might want to get fit, re-wallpaper a room, fill your freezer with ready-made meals in case you need them, clean up any bits in your diet you need to, go on a holiday, learn something new, whatever is appropriate to you.  Viewed the right way and you'll be saying "three months isn't long enough" in no time.

Best wishes

Poppy

[HVAC]

Bubbles,
  All your concerns are reasonable. A person could get pregnant and find out they have MS after the fact. There is nothing wrong with wanting a child. I have a friend who had two kids and was diagnosed right after the first one was born. They are both successful adults. Mom being in a wheel chair, which she was not until they were in college was normal to them.

   Right now amazing things are happening in medicine. You may never use a wheel chair. Not every symptom of MS happens to every person. I have had MS 48 years and I am still walking and riding horses. I use to think all symptoms MS were in my future but now I am not so sure.

  I was a pessimist before I found out I had MS in 2009 and Ovarian Cancer in 2011. Today I am an optimist. I have learned the only thing I have control of is my attitude about life. With illness we give up a lot of control so we try to control other things. Usually things we can't control.

   I could paint many scenarios for mt future. I could be dead with my rarer form of Ovarian Cancer in less 2-5 years that is what statistics say. I could survive that and because of my BRCA one mutation have 87% chance of developing breast cancer. I have Primary Progressive MS and the Neurologists say in my case the DMDs probably will not work and I can't take them with chemo. Because PPMS attacks the spine more often I could picture myself as a Quadropulegic.  Or I could picture being a breast less person in a wheel chair.

  My Cancer had spread to my liver and lymph system this summer making it stage 4. By a miracle I got in a Clinical Trial for a targeted therapy which is not only keeping my cancer at bay but shrinking it. This drug is going to cahnge Cancer treatment.

Long story short I choose to see my future with the MS Progressing slowly. New drugs for PPMS on the horizon. Possibly myelin repair in my life time. I choose to believe I am going to be in the group that does not get breast cancer. For now the chemo I am on is knocking it out. There are new targeted Breast Cancer Drugs in trial. I even refused a double mastectomy because I am that hopeful.

I am going to beat the ovarian that's final. I have had a good life since I was two years old with MS so I know it is okay.

Today I have a great life. A wonderful husband, great friends, I can still walk my dogs, hike, and ride horses.

"True contentment comes from playing the hand you are dealt". Do what you want to with your life. Pregnancy will come when the time is right. A few months will go by quickly.

Be kind to yourself

Alex