Is this normal post-ms diagnosis behaviour?

[aspen2]

You'd think after three years in limbo, this would not be my go-to after diagnosis.  Initially relieved.  Now ...

"Maybe he missed something" and checking back into other possibilities (ummm, the ones that have all been ruled out).

Denial maybe?

Perhaps it has something to do with reading up on DMTs ... and officially having an EDSS score ....  I could see doing this with a fast, unexpected diagnosis, but not after an extended time of unknowns.

I would appreciate your thoughts, all you lovely people who have traveled this road before me :).  Thank you!

[HVAC]

Denial is very normal. After my two year diagnosis I went to another MS Specialist. I thought he would say no MS. He did not. I needed the second opinion. MS is a way out there diagnosis. Most of us do not know many people with MS. It is not like cancer. I always expected a doctor to tell me I had cancer but not MS.

Even now with all my chemo I question if I have cancer. I think why am I so tired. I am on chemo. It just does not make sense to me. I have been on it almost 4 years and I still can't accept. I was thinking yesterday as they were pumping me full of poison this is not happening. This is someone else. I guess I would go crazy otherwise.

Alex

[aspen2]

Yes, I'm leaning towards denial.  Fueled by the reality of reading through the DMT info ... I would like an out now, please.

My cancer is minor; it has not caused nearly the psychological issues that living in limbo has (and apparently then being dxed!) -- probably because I regularly see it.  Hard to argue the fact.

Hold on, Alex -- it's a tough road you are on, and once again, I'm grateful for all you contribute to this board <3.

[immisceo]

I think most of us, regardless of our diagnostic path, have episodes of denial. I certainly did in my first year. It's an odd feeling to really register that you have a chronic illness when (in my case), I felt fine for the majority of that first year. It is confusing! We're used to "feel bad, something's wrong - feel good, nothing's wrong" Learning that that's not the case is part of the relationship we all have to develop with MS.

[aspen2]

In my case, it hasn't been an easy three years.  Lots of relapses.  Obviously something was wrong; all roads did eventually lead to ms.  Then all of a sudden I'm wanting out?  This is a psychologically "interesting" process.

[ConfirmedRachel]

I thought it was just me, still thinking maybe a mistake - this was my mum's illness not me! I know if there was any doubt I wouldn't be dx or on the expensive meds, is still flipping weird though. Can't believe end of next month is a year!

Unfortunately both my friends, family and I am getting used to my rubbish memory - gd in some ways as they don't get so frustrated even though I still do!

It must be the human condition that gives our minds a little protection from serious conditions. People deal with all sorts of things that others looking on can't believe - others with the smallest minor stuff 'losing it'!
In my mind, you always have choices, be strong or rely on others to be strong - a combination seems to work well. Be strong when you can and your friends and family will physically and metaphorically, support you when you stumble.

I've found I'm on here less since the changes debacle, but check in every few days and 'top up' on the strength and stoicism I see from so many friends on here.

Do you find there are certain situations that trigger your 'dx query' feelings?
Nx

[aspen2]

Definitely.  Every time I read about the side effects of the treatments.  It's pretty straightforward.  They are not benign, and I tend to have adverse effects even to pretty benign meds.  I have a preexisting condition that means I shouldn't take them.  My immune system is already shot due to chemical exposure.  BUT I want to slow down relapses.  Therefore, it better not be ms since I can't figure out what to do.  LOL.

What about you?  Which part of this makes you wonder, even after a year?

[cjtmn]

I know nothing of what is considered "normal", but I can tell you that you are not alone. While I haven't been at this as long as you have, I only agreed to the additional testing to prove that I did NOT have MS. So much for that thought....

I do think part of what makes this illness so difficult for some of us is that the symptoms could easily be attributed to other, more common issues: pinched nerve, poor sleep, aging, depression and/or anxiety, migraines, etc. Since I cannot SEE the disease progressing - and the meds that I have chosen to take will not necessarily make me feel better - it is a bit of a leap of faith to believe that anything is happening at all. Even with on-going symptoms.

I've been waiting (and whining) about starting on the DMTs as you know. Mostly because I fear if it drags on any longer, I will chose to not take anything until another, more severe flare up occurs. If we believe that I have had 3 flares since 2008, I can say that each one has gotten worse, which stinks. Since I live on the edge of denial, it would be easy to just skip it and pretend like none of this ever happened.

So you are definitely not alone. It's a tough one to wrap the mind around for sure!

Cheryl

[aspen2]

Thank you Cheryl, and yes it is.  Easy to live in denial when things are going relatively well.

[TLC1104]

Hi,
I'm still very new to ms, when I had lots of tests done, I kept thinking the doctor was going to come back to me with,  there's nothing wrong,  now get back to work! No such luck..........Denial is my happy place at the moment,  the same as you, reading up on the dmd's that I've got to choose is so daunting,  I'd rather go back to not realising there is anything wrong.  
I'm getting used to having a conversation with anybody now & just saying,  "I'm fine thankyou" I'm basically hiding how I'm feeling.  Haha.  
I do hope you get to a time when you feel different.  
Take care.  
T

[aspen2]

Hopefully we both will :).

[ConfirmedRachel]

All familiar feelings! I don't really doubt the diagnosis as my relapse was pretty full on and scary ... standing up and losing your sight sort of has that affect! The other tingles and weird stuff I could have put down to all sorts of things, or ignored it all together.

With the spine disc issues meaning my peripheral nerves get beaten up every now and again, I assumed it was all connected to the back op.

DMDs are scary. My mum had no drugs available - that was scary! Having nothing to help is pretty rubbish. Feeling back to normal-ish makes you think what am I putting in my body? I've always been so fit and active, what went wrong!
Then again, I've always reacted to things - Asthma, bit of hay fever, Poor circulation/mild Raynauds, few food intolerances (ok a lot!) etc.
Makes you think, how will I be on these drugs ...

I can tell you, I expected to have all the side effects going, I stocked up on all sorts of gastro-intestinal stuff from the pharmacist, mini aspirin and so on. Tecfidera for me has been pretty good. I know for some it's been hard whatever they tried.
For me, porridge or muesli at breakfast with first tab, smallish lunch (fruit/yogurt) then evening meal 12 hrs approx from breakfast for second tab. I mainly get flushing which is irritating rather than painful, bit itchy and uncomfortable but mini aspirin sorts it. I've had the very occasional nausea/cramps/diarrhoea - but all pretty mild really.

Well this turned into a bit of a ramble didn't it!

I suppose what I'm saying is the alternative is taking nothing - for me, that is worse mentally than dealing with the physical side effects I've had.
I've seen MS patients in the old days and their decline. I watched my mum as a little girl eating nuts, seeds, different oil capsules - that's all they had.
Day one of Tecfidera I cried. I'm a strong and usually positive person, but it made it more real.
My memory lets me down every day, I'd like to give my body every chance to reduce any other serious deterioration and that means taking the DMD.

I also take a multi vitamins & oil supplement (can't hurt), and magnesium - along with the high dose Vit D from the Doc. My last scan (before Tec started showed no new lesions and shrinkage of others, I only had D and Vits at that point).

[ConfirmedRachel]

i think it had enough of me as my keyboard stopped working!
Nxx

[rendean]

Yes, you are completely normal in your feelings of denial. And, yes, selecting a DMT makes things exquistely real!  I went through years of symptoms, wrong diagnoses and finally an MS diagnosis which I knew was coming and I still was in denial.

It's human nature and a protective mechanism for your own survival. A rollercoaster of emotions including denial more than year after diagnosis is considered "normal". Don't be too hard on yourself when dealing with your emotions. Eventually, they will calm down. But, each person is different about their acceptance of the diagnosis just as each cae of MS is different.

As a side note, I have multiple allergies and sensitivites, though no previous chemo, and did well on Copaxone for a while until MS progressed.

Best,
Rendean

[aspen2]

It's good to hear this, Rachel -- I have all sorts of side effects to medications (occasionally common; usually the obscure ones that make the pharmacist scratch their heads in disbelief ;) ...).  

That is in part what is driving my nervousness about them. Thank you for sharing.   Agreed though -- I have three relapses a year and between that, then recovery -- well, it's been a challenging three years and needs to stop so I can be more consistently useful again :P.

[aspen2]

Thank you, rendean.  Glad I'm not the only one.  You guys have all helped immensely .. I've come down from my irrational burst of searching for different answers.  :P.

Copaxone appeals to me ... given all my other issues and messed up immune system.  I've taken the steps to see about going back to a neurologist I saw in early January -- he seems more amenable to working with patients then just telling them what to do -- I'm hoping he will be willing to take me on.  (and is able to since he's not an ms specialist).

thanks again!!