My latest neuro appt.

[cjacks]

Hi Forum Family

I've screwed up the courage to tell you about my neuro appt. Wed.

It was a cancellation spot so it happened very fast. When I got there the doc had a hospital emergency so I saw his P.A.   A young woman who spoke fast and made me feel rushed , and I forgot things ( like my timeline up-date , i brought it but did not give it to her..   I'm always reminding others about theirs :)  , can't believe I did that )..

She did a good job with reviewing my history and went through everything new that I brought in for them. She was quite thorough. Did an exam , I could not feel the cold metal on my lower legs and no reflexes in knees. Says I have sx. that might involve my lumbar???  I thought that MS is not seen in the lumbar.  And something else that stood out for her , saying she thinks there may be a new lesion at the base of my scull??

I told her my concerns about my hyperparathyroidism and the demyelination that it can cause(rarely) .. she said she couldn't comment on it or the new scans ..The doc arrived , they had a brief conference out of the room..?? she came back in and was ready to talk about these things..

said absolutely does not look like demyelination from anything but MS . Period ...  I have  classic appearance and placement of lesions. The second MRI showed changes and lesions enhanced( lots of them and big)..  WHAT??  That was news to me .   I was sooo stunned.   And she was so matter of fact..

I was so hoping that the high calcium and PTH were a big factor and that maybe my PCP was right and I might not have MS after all .. I have been telling myself not to get my hopes up , I did not want to still be on the Limbo Land Express and experience all that goes along with getting an MS dx., again  .. but I did .  

It was one of the worst days of my life. I was soo angry and had all these emotions that I had no idea what to with.

PCP got a letter from the surgeon who did the parathyroidectomy , saying  if my calcium and PTH were still high it was from something else. That would make three docs on board with this new theory, that I have another  dx. on top of the for sure ms.      (I did some research  and none of it is good , I actually got so scared I had to stop). PCP has referred me to Dr. Lupo, endo, with a suggestion of doing a full body ??scan to look for some wayward tumor.   Neuro ordered brain, cervical, thoracic and lumbar MRI ..next Friday.

Sorry , this sounds so disjointed.. and bleakish
I'm pretty scattered. P*ssed Off.   yes I wanted a dx. but now I hate what it is .  I'm having a great deal of difficulty with it this time around.,  and not knowing what the other thing is ..    I'm overwhelmed  

I just might have to have some ice cream. and watch a funny movie.
Love and hugs to all
Jo

[cjacks]

Famlly

Thank you so much for helping me through a very difficult place last night .  I woke up with new determination .

You all have no idea what you're rallying did for me .  And when Quix said ' You are nestled in our arms' the defenses and tension melted in that moment and I could literally feel something . Like I was physically being comforted.. it was soo amazing and so healing.

I am going to (try) gently take the MS dx. and just live with that for awhile. (Even though I got my MS dx  three months ago I've really been living on the fence , not knowing if the other disease was the true culprit).

Now I  have something to  identity with,( MS ),    I didn't know where I fit in before , thus the lack of posting or responding.

Oh and thanks for coming to my party .. The ice cream was just what the doctor ordered..:)

Love , light and a little bit of luck

Jo

PS. Quix , I got the first MS dx. three months ago  'by phone from a receptionist'.   :)  You just have to laugh at this sh*t.   Sorry for the language

[sllowe]

Hey Jo,

Sorry I missed this yesterday.  How are you today? Still down? Well, I say sometimes ornery and aggrevated is better than down because at least then you still have some fight in you.

Keep yourself distracted best you can while you absorb all of this, take the time you need to get your feelings in place.  Round 2 and 3 will be easier to get through once you get to a good place in your head w/the dx.

Keep talking to us Jo,
(((hugs))
Shell

[doni54]

I'm sorry that your appt was so tough, and they confirmed what you didn't want to hear.  Please go have that ice cream and movie and relax.

I'll keep you in my prayers

Hugs
doni

[GrannyJo6]

Wow!  That is a lot to deal with in one fell swoop! Get some rest, enjoy the ice cream and movie and let it sink in slowly if you can!  You must feel you are under a water fall! I am pretty new to the site, but wanted to add my well wishes to the others. How could I not? I'm another Jo!

[Quixotic1]

In medicine it is always better to explain something with a common answer.  In the case of the high calcium you already had a known and proven problem.  You had a surgical problem with the parathyroid glands.  When you still have high calcium levels after surgery it makes much more sense to presume the surgery did not take care of all the problem than to suddenly say, "Wow, maybe she now has another reason for a high calcium."  That is just silly.  Not completely impossible, but it would be extraordinarily rare!  Yes, it is FAR, FAR more likely that something was missed in the surgery - despite the surgeon's ego.

Overhead being said by my office nurse to the local "God's Gift to Women and the World Surgeon,"  "Wow, Dr. Murray.  I didn't know this elevator could hold you AND your ego"

Gotta love it!

Quix

[Lulu54]

Jo,
It sounds like this visit was handled in a poor way to give you such news to absorb.  I'm so sorry you were treated this way and didn't get the talk through everything with your neuro before you came home.  When is your next appt scheduled?  Soon I hope.  

Take a day off and enjoy all the ice cream and movies you want and recharge.  You have lots of work ahead of you to get a clear picture of everything going on.  Let us know when you're ready to restart the journey and we'll be there with you.

My best,
Lulu

[cjacks]

Family

Thanks for all the reassuring words. You're all so generous with you're thoughts and feelings and time. It means the world to me.

I am not going to jump to any conclusions . I've do that in the past and its not that much fun. One day at a time, as they say. And one dx. at a time.

I am sorry my post was so scattered and hard to follow. I'm living it and its hard for me to understand .  I did try to condense it or else it would have been a book.

Q. I think that my PCP was talking about that 'syndrome' without putting a name to it. I'm going to stick with :   ' parathyroid surgery was screwed up and the surgeon , who is notorious for his HUGE ego , can't admit that he may have missed something.'

Thanks everyone for the offers of Ben & Jerry's .. I'll turn the lights on , all are welcome anytime.   A side note ;  I use to visit Ben & Jerry's when they were a fledgling establishment in a converted gas station in Burlington , Vermont.. A very long , long time ago. In a far and distant galaxy ...  

And welcome Udkas. Thanks for the well wishes.

'Lars and the real girl' ??  I don't know. I picked up 'Sex in the City'   Oops 'Sex and the City'  That should get my mind of things for awhile.

ttyl    Love and light to all

Jo

[mokibear]

I know you have been having a rough go of it lately sweetie and now this on top. No wonder you have been so down. I'm sorry you are having to go through all this Jo. You know that I am here for you whenever you need me.

Hang in there and don't fret, we will all be by your side as you go through this. Listen to Quix, she is one smart cookie.

Hugs and love
Moki

[Sarahsmom46]

I can offer your own pint of Ben & Jerry's Cherry Garcia and tonight's movie is "Lars and the Real Girl" (not my pick, but my daughter thinks its funny).  Take this all one day at a time until you have a full picture of what is happening.  You are getting some answers.  Now you need to time to process them.  Hang in there and let us help you with this journey.  

Many hugs,

Julie

[Udkas]

Hi there,
I am new to this forum but your post moved me to tears.  What a selfish, uncaring neurologist, Drs sometimes forget the emotion and caring side of things.  I hope you do enjoy your icecream and do get to have a good laugh with your movie.  All the best, for whatever outcomes.

Cheers,
Udkas

[syndismilez]

Awe, my hugs are with you too. You have a great support system here. Let it all out!!  I have even taken my pillows and down comforter and beat them and kicked my legs and arms!!!  I felt better :)
We are all here for you!
Cyn

[Quixotic1]

Oh, honey, I'm sorry this has risen up to slap you in the face.  I was trying to follow all that you said and it sounds like everything looks like MS, except there is the additional complication of persistent elevation in Calcium, despite the surgery.  So your PTH (ParaThyroid Hormone) is also still elevated.  So something is "driving" the remaining parathyroids into producing.  Are they positive it is not another parathyroid adenoma?

So you are being sent to an endocrinologist for further work up on that, because that isn't a part of MS.  And they are suggesting that the elevated calcium might be part of a "paraneoplastic syndrome"  which is when a tumor in another part of the body causes metabolic, hormonal, or neurological side effects.

We all want to leave Limbo, but there often develops a kind of comforting denial there.  We can be completely okay as long as we are there.  Someone is pulling you out of that with what sound like harsh realities.  And the visit was rushed, impersonal and sort of Slam Bam, Thank You, Ma'am.  The worst way to find out other than a phone call from an office assistant.  I see why you are wrung out, scared, angry, and in need of ice cream.  

Remember, Dear Heart, we are all with you in this.  We are all praying for the simplest and best answers possible.  The MS thing, well, that doesn't surprise us, does it?  You are right there with matching our symptoms and experiences.  Wanna come over?  I have Mint Chocolate Chip, Cherry Garcia, and Peach Cobbler (Ben and Jerry's).  Enjoy a great movie with a few dozen of our closest friends.

You are nestled in our arms - all of us new and old alike.  This will clarify and settle down soon.  I am certain.

Momma Bear

[Rena705]

Geez Jo...I will be right over with that ice cream and we can watch that movie together!  Here you are concerned about me and still having all this in the back of your mind?  I don't blame you for being scared and p*ssed off and all the rest...you have gotten a huge load of "junk" heaped onto your plate all at once!  

In all honesty, I am not in a very "clear" frame of mind today for some reason...but I will read this post again tomorrow and hopefully I can offer something more ok?  I am sorry but I really feel as though I am in a mental fog and I am not sure where to step next so I will get back to you but in the meantime, don't give up on the other members...you are brave to get this down where you have to really look at it...keep up being the strong one for a while longer ok...we will see you through this!

Lots of Hugs,

Rena

[essdipity]

Wow, Jo, you have a lot to handle. Of course you're upset. The only thing is, you don't have to deal with it all today. A little denial won't hurt, as you gradually work to identify whatever else might be wrong. Don't jump to any conclusions. That will make things worse, and may all be for nothing.

But dang! Maybe a bit of kicking and screaming is in order. Sounds mighty tempting, no? Why not, if it gets some feelings out? You've really been through the wringer this year, Jo. I'm just hoping it all simmers down quickly for you. Meanwhile I send lots of hugs, and all 31 flavors of Baskin-Robbins.

ess

[Janette2836]

You deserve to have the best ice cream right now & the funniest movie around!  I am sorry you are going thru this right now.  I can not imagine hearing all that information.  Be strong & know that we care about you!  Take care & know I am thinking of you & sending prayers & hugs your way!

Janette