What Can be Worse than MS?

[Sarahsmom46]

I probably should have made a journal entry on this post, but instead felt a need to share this with you all.  We are family afterall.

I was diagnosed with MS almost a year ago.  While I'm not the classic MS patient, there was enough evidence cliinical and from the lab findings to meet the McDonald Criteria.  So, I have MS and I came to accept that awhile ago.

Then came a ton of genetic testing over the past 7 months by an internationally known research entity that has turned my world upside down.  An unexpecte result showed up in a chromosone test. After further testing and confirmed resuts from an outside certified lab, they think they found another disorder/disease that would help explain the neurological issues that I have that can't be directly attributed to MS.  

I just don't know what to think about it all especially now that I am in a semi-limbo with these new findings.  A team of doctor's are being put together to try to sort this out and come to a correct diagnosis, but from what I have been told, painstakinlgy told, that this could be more of a challenge than the MS.  My lung functions are declining.  My neurological problems, the ones that my neuro says are not MS related, are not showing improvement. I had to ask the doctor's point blank if they were re-thinking the MS diagnosis.  The response is that they don't think so, that I quite possibly have another neurological problem going on and to stay on the DMDs.

So, what can be worse than MS?  Being in limbo again. Looks like the rollercoaster has started up again.  

I know we all have our challenges and somehow we manage to get through them.  And I will get through this period because I've already been there and done that before.  

Thanks for listening.

Julie

[Quixotic1]

I am totally dismayed to hear all of this, but I have never understood the progressive loss of pulmonary function.  I am glad they are being thorough.  Do you have "any" idea of what it is they are looking at??  I haven't an inkling.  It isn't mitochondrial disease is it?

Concerned, and rooting for you.

Quix

[Sarahsmom46]

Thank you all so much for your kind encouragement and words of wisdom.  Sometimes it is hard to truly see your circumstances when you are in the middle of something very difficult and especially now when my mains support, myhusband, is so far away.  

I had a good talk with Ren the other night and she helped me put this into a much better perspective.  I am the same person as I was before and things in my life may change in ways I had not anticipated, but it is not going to bring me down.  

I have good support from my doctors and just as important from all of you at this time.  My family will come along once they understand what this all means.  I certainly can't explain it to them and am leaving it to the doctor's to do the explaining.  

The next step is some more testing, a little more invasive, but not too invasive.  I do have a positive outlook and am doing everything I have been told to do to help myself not get any worse. And, I am still taking my copaxone religiously.  

Thanks again for your amazing support.  I know that there isn't anything we can't bring to our forum that is too silly or too terrible that we are not helped through.  

Love to you all.

Julie

[summerluvr]

hmmm this sounds like a rock and a hard place.

I don't have MS but I could say I have something worse then MS, but I live with many of the same symptoms of MS (hence why I am here) and then some more.

I think you need to just focus on trying and keeping a positive outlook that you can face whatever it is and keep living your life!

[essdipity]

Gosh, Julie, what a mess. Don't you sometimes feel like screaming Stop the World I Want to Get Off?

You've had way more than enough. I wish I could do something, but at least I can say I'm here for you.

Hugs,
ess

[Ginosmommy]

Just wanted to let you know that I am thinking of you and praying for your strength through this time of uncertainty.

MeLissa

[Guitar_grrrl]

Julie,
I'm so sorry you're going through this.  I hope you find answers soon, and your MDs are very proactive.

Hugs,
Guitar_grrrl

[Udkas]

Oh my God, I feel for you!!  You were in limbo, get a diagnosis of MS, come to terms with it, move on and now this whammy, life is a roller coaster journey, none of us diagnosed or not diagnosed know what the future holds.

I don't like the sound of something that has the potential to be worse than MS.  I think not knowing what you are dealing with would be the worst thing, now you have all the uncertainties again.

I hope you get some answers, (good ones) and that the outcome is something that they can treat to give you quality of life etc. and nothing too nasty..

I guess in answer to you question there is always a lot worse than MS and of cause it would depend on the course your MS decides to take too.  

Thinking of you, sorry this is happening to you.

Take care, do keep us updated if you can
Cheers,
Udkas.

[deborah0904]

I am so sorry for what you are going through.  I know this must be so difficult.  I'll be praying for you.  Please keep us posted!

[DawnYM]

I'm sorry you are going thru this!!! Hang in there sweety!!!

[lovemy6monkeys]

Julie,

I'm so sorry and I offer you all the gentle ((hugs)) I have.

~Jess

[Lulu54]

Julie,
What a struggle for you to be continuing in limbo.  There is way too much going on in your life to deal with this uncertainty, too.  

All I can say is at least you are in good hands there at NIH and thankfully they don't want to yank the DMDs.  It can be so miserable to live with all these questions.  Please don't forget we are all here for you if you need to vent.

lots of hugs to you my friend,
Lu

[PastorDan]

Like the rest of the family, I'm here with you too, and praying without ceasing.

[HVAC]

Julie,
  I am sorry.
Alex

[twopack]

Hi Julie,

Unfortunately, getting the MS diagnosis doesn't grant us immunity from other serious health problems.  We know that of course.  Still, it would only seems fair to be able to take at least a brief break to stabalize ourselves before diving into diagnostic struggles again.

I can relate to the feelings you share because just four months into my official MS diagnosis, I'm struggling through limbo again to diagnosis some wacky heart rhythms.  You expressed yourself beautifully and I thank you for sharing here.

I hope you find an easier solution this time around.  My thoughts are with you.  I'm going to make you my pocket person the next few days. (I explained this in another topic.  It's a good thing.)

Mary

[rendean]

Dear Julie,

I am so sorry to hear of this new development. It would answer a lot of questions about the symptoms that do not fit the MS scenario.


Being in limbo again or rather , still since so many things didn't fit, is something I wouldn't wish on my worst enemy. You know everyone here has got your back and we will be here for all the support you need. Limbo is limbo, regardless of the disease and we all get the limbo nightmare.

Please let us know when you need a group hug or just to vent. We're here.

Love,
Ren