Emotions

[sarahw244]

Hello all.  I come from over at the limboland forum and have dropped over here a time or two.  I received my official dx of PPMS this week.  I have been searching for answers for at least 3 years, if not 4.  I am now at a place where I am having a mixed bag of emotions.

I thought that I would be happy to have an answer, and I am I guess, but I find myself today questioning my dx.  After all these years (not as long as many here, I know) of searching, do I now continue to seek out yet another opinion to either confirm or disregard my dx?  When do you get to a point that you are accepting of this dx?

It's not that I'm scared or sad or anything.  I think that it's just hard to believe, if that makes sense to anyone.  Being in limbo for a few years, and just like that, here is your answer.  It's very odd, what I am feeling.  It's hard to explain.
Does anyone have any input?
Sarah

[heartfelt77]

  Thanks for taking the time to answer my questions.  They were very helpful.

  Take care
    Misty

[twopack]

Misty, PPMS describes a progressive form of MS that shows itself throughout the entire course of the disease.  It starts as that and will always remain so even though it may take some time for the specific characteristics to show themselves clearly.

RRMS (relapsing-remitting) may "progress" to SPMS (secondary progressive) and is felt to do so eventually for all or nearly all those who have that form of MS.  That progression is believed to take 10-20 years or longer.

A doctor may want to observe symptom presentation and progression before making a firm determination about what form of MS a person has.  I would think most don't want to limit treatment options unnecessarily.  

I have a MS diagnostic code on my chart at the MSologist's office.  I don't even know if codes exist for the specific types of MS.  So far I haven't asked what type I have.  

I would hope you have seen by now that there are no taboo questions here.  Well, unless you mean you aren't prepared to hear the answer you're thinking you'll get.  So, ASK AWAY.  However, it might be best to ask under a new topic heading.  Many people will miss your questions otherwise.

Mary

[twopack]

Those mixed emotions are very understandable Sarah.  It isn't unusual for PwMS who waited years for a diagnosis to feel that sense of relief initially.  It just doesn't last very long.  

I think it's a hard concept to grasp until you find yourself where you are now.  For me, the relief disappeared as soon as I realized I no longer could pretend there was hope I might magically return to my pre-1990 normal.  I didn't realize then that it was possible to discover an improved present day normal.

It wasn't too long before the doubts about the accuracy of my diagnosis began to surface.  I don't know why.  Renewed hope?  Return to the familiar?  Denial?  I questioned my doc and he ran the exclusion test I requested and it was negative.  I let it rest.

NOW..... for you I have a question.  Have you seen this diagnosing doc for a while?  Is it a neuro who has followed your progression for a while?  Or one who questioned you extensively about the history of your test results and symptom history?

I ask because it's a bit unusual to be diagnosed with PPMS right out of the box even if you have been waiting in the starting block for years.  I seems the docs like to observe the nature of an individual's disease process for at least a year before trying to make any determination about the 'type' of MS they have.

I guess that's the part I'd be seeking a second opinion about if I had a doubt about the diagnosis.  Otherwise, this is still very new for you and you might need to "sit with it" for little while before you make any decisions about what direction you want to take.  

Maybe you need time to shift your focus.  Time to go from searching-out-a-diagnosis mode to living-life-with-MS mode.  OR, you might decide what you need is another appointment with THIS doc so he can explain how he came to his diagnosis.

Whatever you decide you can be sure your path will be as distinct to you as it is familiar to other PwMS because that's what having MS means - similarities abound but none are exactly alike.

Let us know how you are and how it's going (or staying).  Sorry.  My bad humor is showing.
Mary

[heartfelt77]

I have a couple of questions maybe you can help me.  Are doctor more reluctant to diagonse ppms because they know they can't do anything for it?  Were with rrms theirs treatment for it.  I'm I making sense?  

My other question is can you develop ppms within 2 yrs.  Or is it more over 10 or maybe even longer?  

I'm only asking because I'm sort of in the same situation were doctor are not saying.    Are you able to answers any of these questions?   I have more but, kinda scared to post them here.  

Thanks you for taking the time to reply to me.   You seem like a very strong woman and fighting with ppms it must be hard.

Thanks again
Take care,
Misty

[HVAC]

I too have PPMS. I think it is harder to accept PPMS for two reasons. One it does not act like classic RRMS. The word most often used is subtle. Subtle in changes sort of like wading into deep water. The second is because there is less that can be done about it we are more reluctant to accept it. Most people have had PPMS for years before it becomes apparent to Doctors. I thought the Neurologists were wrong. I got several opinions. At one point I was going to walk away when they would not say either way that I had MS. The neurologist said you can't walk away you will be diagnosed with MS in the future. I thought what does that mean?

I still sometimes think I will have a Doctor say just kidding you do not have MS. So far the Neurologists all agree I have PPMS. It is normal to doubt. One day you do not have MS (so you think) the next day you do. Not just MS but the !5% kind PPMS. You are the same person you were before the word MS came into your life. The MS was there you just did not know it.

It is okay to feel anyway you feel. It is a freaky disease. I remember the first time a Doctor told me I had MS. I was on the phone in my driveway with him. He was looking for something else. I was floored. I did not even know what MS was.

You have us to lean on and ask any question you want.

Alex

[Lulu54]

Sarah, in my comments that would be STINKS and not THINKS!  I don't understand how my brain puts correctly spelled but totally wrong words into my posts (often!).

I'm with you - I am still waiting for the doctors to say "oops, my mistake. "  But my neuro laughs when I tell him that and assures me I do indeed have MS.

If I were you I would question the PPMS dx and ask to be treated as RRMS or SPMS for a while and see if those relapses occur if you continue with a gradual decline.

Be sure to go over to limbo forum and keep them up dated.  Your success in finding a name for what ails you can be an inspiration/motivation for others.

hugs,
L

[sarahw244]

I believe that I have MS but at the same time, I don't believe it.  Maybe because now that I actually have a name after so many years.....I think I was just stuck thinking I would never know, even though I already knew in my heart that's what it was.  This probably isn't making any sense to anyone.

I had given up receiving a dx of any kind and found a doctor  who was willing to treat my symptoms.  That's really all I wanted from the beginning.  I don't want to feel like crap all the time, with the fatigue, and painful muscle spasms, feelings of weakness, did I mention the fatigue?  ;)

I am sure this will pass.  I go back to the doctor tomorrow to find out what the course of action is going to be.  I will tell him too that I am feeling this way.  I thought I have read on this forum from time to time that others have had this too, this doubt that sneeks up out of nowhere.

Anyways, thanks for all the words of encouragement!  It is much appreciated!
Sarah

[jujuminx]

I am so sorry.  Yep, it's a club no one wants to belong to. While you now have a name to go with your sx, if you are not comfortable with the dx and want a second (or more) opinion, then do it.

My sx had been on and off for close to 20 years (mostly off) that by the time I had my last relapse in 2010, I finally got smart and did some research. By the time I got the dx, I already knew I had MS. Even though I prayed that that wasn't the dx and I was wrong, when the neuro said the words, I knew he was right.

Sometimes I did doubt the dx but for me anyway, it was wishful thinking. I was hoping that maybe it was something that maybe they had a cure for?!

It took me awhile to finally get use to it and let it soak in. Had I had serious doubts though I would have sought a second opinion.

Hugs and good thoughts to you....

Julie

[Lulu54]

Sarah, welcome to the club no one wants to belong to .. Having a dx of ms thinks but it is better than not knowing what's wrong.  I understand your hesitancy to call this ppms and sice you have doubts, a second or third opinion might be a good idea for you.

I'm glad you are out of limbo and hope we will see you around..
Gentle hugs,
Lulu

[maxthecat43]

Evidently, while I was typing my last comment, the cursor moved into another sentence.   So there is a really strange partial word in a sentence is doesn't belong in...  I really wish there was a way to edit comments!

Tammy

[maxthecat43]

Hi, and welcome!  I went through period of disbelief and anger for several  months.  It's strange, no matter how much you believe it probably is MS, when the dx finally comes, it isn't a happy occassion.  

That said, your diagnosis was based on science, your history, and your doctor's experience.  I don't think they make a dx of ms lightly, and your form (PPMS), is one that I believe have to watch for a while before they reach that conclusion.  

Bottom line, it never hurts to get absora second opinion- but take some time to absorb the information, and grieve.  

Take care of yourself, and remember that any emotions you are having are normal.  You just need to work through them.  Someone here told me that the first year after dx you get a mixed bag of emotions.  

Tammy

[Sidesteps]

Awww, my friend. I don't have answers to this but wanted to give you a virtual (((hug)))