It's been a while....

[janereed]

Hello everyone, it's been quite a while since I posted here, but just wanted to stop by and say hello and give an update!  Since I came back from the May Clinic (Feb 2010) I have not seen a specialist.  We were stationed in SC, but had some major problems with my son which caused us to have to move to a different station that could provide us with a hospital that could deal with him, thus putting my specialist visit on hold.  We got stationed in AR and got here in April 2010.  I have been waiting to see a specialist since then and will finally get to see one this Thursday!  I cannot believe it has almost been a year!!!  I am excited, but scared at the same time.  I am happy I have a female doctor, but am scared of what I am going to have to deal with when it comes to diagnosis and treatment. Right now I have a diagnosis of Possible MS.  What gets me is that I had a lesion show up on an MRI that was not done with MS protocol, I have dissemination in time and place, yet the Neuro at Mayo wouldn't give a definitive diagnosis.  My PCM here fully thinks I have MS, but is not a neuro so he cannot give a diagnosis.  He has been great at helping with exacerbations, giving me steroids when needed, treating my many UTI's. He is a great doc, but I am afraid of getting into the circle of diagnosis and treatment.  What if she starts all over again?  That would be really hard to handle!! I guess I just needed a sounding board tonight.  I cannot sleep because I am so nervous!  Anyway, thanks for listening and I will definitely update everyone on Thursday.

[janereed]

Thanks everyone for the warm welcome back!! ANonnyMouse..good luck on Thursday!  I will be thinking of you!! Definitely let me know how it goes!

[janereed]

I wonder the same thing!  My PCP told me that MS can be diagnosed without an MRI, and in my case he would have diagnosed a long time ago and already started treatment.  He said with the amount of exacerbations I have had and the different parts of my body that are affected, he would have run tests to rule out other things..which by the way has been done numerous times on me... and when he found that it was not Lupus or anything like that he would have started me on DMT.  Oh well, what can ya do??  My PCP is really good about helping treat symptoms though, so I cannot complain about him!  We will see how this Neuro is, she is the only MS specialist in my state, so I am stuck with her. I will definitely let you all know how it goes!!

[addicted2harleys]

Welcome back, Jane.  You must have followed me in the door.  Lol.  I just came back to the forum, too.  :)

I hope all goes well for you Thursday and that everything is ok with your son.  

Addi

Oh yeah....I have wondered that same exact thing, Lulu!!

[Lulu54]

Welcome back, Jane.  It is good to see you return even though it is  because of  this cra ppy disease.  It is good to hear you are going to be evaluated again - I hope they build on the data they already have instead of starting all over.

Your comment makes me wonder something that I have thought of before, but never get around to asking........

why does it take a neurologist to DX MS and why can't our PCP's do that and get that treatment started?  If we lived in a remote area that didn't have neurologists, would we ever  get a diagnosis and treatment.  Just wondering..........

Good luck on Thursday and keep us posted, ok?

Lulu

[anon07072023]

I hope that you have been having less flares now.
And I really hope that they can figure all of this out for you.  And if it's MS, then maybe they'll start a disease modifying treatment for you.  

Good luck!
Kelly

[ANonnyMouse]

Hi Jane, I'm only a newbie here so didn't see your earlier posts, but I just wanted to let you know that I have the first appt with my MS specialist  neurologist on Thursday as well (my present diagnosis is "probable MS but atypical") so we can be nervous together.

I look forward to seeing your update after your visit. :)

Cheers,

Nonny

[Sparkysarah]

Welcome back and thanks for letting us know how you are getting on. I am sure that Thursday feels a long way away, but it is not very long now to wait. I expect that you are feeling a huge range of emotions and not sure what to expect. I hope that you get some answers and try and keep an open mind.  I won't say don't worry as I can really understand your anxiety about this consultation. However do try and rest and get your sleep if you can. Have you tried having a relaxing bath before you sleep and sometimes you can get a lavender spray to put on your pillow which helps to relax you and hence sleep better.

Let us know how you get on and I hope that you get some clarification and answers.

Love Sarah x