I had my appointment with the MS Specialist this morning.
Well, I wish I could say I have a definite diagnosis or answer, but as usual, no such luck.
It just isn't in the cards for things to be solved simply for me.
And, it isn't that I wanted to be diagnosed with any one thing more than another... I just want answers.
Overall, the MS Center was great. I knew it would be...
The RN was great, the doc was great. The doc doesn't think it is MS, because the MRI is negative. However, since it was the open mri (remember I freaked), she wants to do another MRI, closed, with me knocked out (at my dad's hospital/which is hers), in the end of November the beginning of December. It is possible that MS lesion evidence was missed because open mri's are not good for showing that. I will see the Doc again on December, 17th.
If anything 'new' or 'interesting' happens before then, I am supposed to call.
Doc also said that she wouldn't change much anyway. Methotrexate would be where she would start me. However, if I did have the MS, the center is so awesome, they have everything all together, support groups, therapist, pt, ot, RN/PA's etc. And, there are other treatment drug options, too.
She thinks that it is PNS or CNS Lupus. Not that any of those things are any better. So, that sucks basically.
So, I am frustrated. I just wanted answers.
I do have an appointment with a neurosurgeon, May 14th. Yay. Brain thingy... next on the agenda!
I am going to change to a new rheumy, one that used to be at HSS in NYC, and is now in NJ, it will be easier on me, Hubby and all.
I have decided that changes are in order. :-)
So, that is that... or not that... lol or who know what that is!!! LOL Thank you... I felt your positive thoughts with me as always!
That is enough of that medical crap for a while... I am tired of it, and I know all of you must be also!
be well,
Dawn
Dawn
21 comments:
No we aint tired of it, we just all want answers like you!
Keep well Dawn, see you in a week.........Hugs, Gaz xxx
I wish it was easier to find out what was wrong with people. Hang in there, keeping you in my thoughts...Sandi
I know the frustration. Hope they can figure things out soon for you.
TAlk about what you need to talk about and we will read it... because we care... at least I do... and know how frustrating not knowing can be....
I'm frazzled and loopy today... just wanted to say hey...
*Hugs*
heather
Cute Dragon Tag! It's Friday! I hope the weekend is relaxing for you--no worries! Take care! Julie ;)
The doc wants you to let her know if anything "interesting" happens. Hey, just have her read your journal! Have a fun weekend. --Hugs, Cin
Lol as to what Cin said. I know how fusterating it can be not to have answers I went through my own little hell a while agon without coming out with answers either. Glad to hear otherwise everything went ok today. (Hugs) Indigo
Well rats.......... I am sure sorry the answers were not there for you dearheart. I am praying the neurosurgeon will be enabled to do what is needed and that the docs are wrong about the mass not accounting for your symptoms -- that the symptoms will disappear with the mass. They don't know everything, for sure.
loving you
karyl
well darn i was hoping you would find out something:( have a good weekend
Deb
I know you would rather have a definitive answer. Such is life. Never cut and dry. Glad that they are doing their best to take care of you.
Traci
please if you have the time , tell me what CNS and PNS Lupus is...central and peripheral nervous system?
I don't understand.
Marti
It's a good thing we aren't sissy's huh???? lol lol lol We will get through it because we have so much still on earth here to do...So far I haven't experienced anything trully unbearable except for the heartbreak I see on soooo many faces of people who love me...You and I will continue to warrior through the next couple of months...it's who we are Dawn.
Love,
K.
Well, frustrating as the "no answers" are, at least you can rest assured that for now the MS doc doesn't think that is what is going on. Again, your lupus can mimic MS, and is often misdiagnosed as MS. I think changes can be good, and you are very pro-active and involved in your healthcare. You set a shining example. Hope you have a good weekend! De ;)
Oh boy, Dawn, that has to be frustrating; not that you want MS but the wondering. I just found out not too long ago about the subcategories of lupus. Do they have any way now to definitlely diagnose it? Is the treatment the same? Bless you because you are providing us with such a wealth of information on a subject that isn't that well understood.
At least your surgery will be done soon. One less worry. And you do have access to the best doctors in the country. God speed, Dear Dawn. You are still such a bright spot in JLand. Big HUGS Chris
Oh Dawn, I know its hard when they cant pinpoint. It will work out, the answers will be there soon. I know.
God Bless
Ellen
(((Dawn))) I'm sorry that they didn't have the answers yet. It sounds like a wonderful place. So many prayers going out to you!
Hugs,
Gretchen
....i dont go in mri's unless they sedate me or put me to sleep. i wont get no where near that man made contraption...
I wish there could of been more answers for you! Linda
Nope, we're not tired of it at all, so don't even go there.
I know what it's like to have alot on the table and just wonder how the hell I got to THAT table to begin with???
You've got a plan, and it's a good one.
We love you, and that's good too.
xoxoxo,
andi
Always feel free to vent about medicine! Sometimes I think they are all in a room somewhere "googling" our symptoms! Sending good thoughts your way!
Sorry you haven't found out anything yet. It is fraustrating. It'll be okay you'll see. Take care, Chrissie
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