I'm Concerned it's MS

Hi, forum family~
I am writing to update from my last post following my brief hospital stay for SoluMedrol to treat severe leg weakness.

I went to see the new internist today (who is quite handsome! Not sure if I'm allowed to say that after having just celebrated my 24th wedding anniversary with hubby -- 19 best years of my life!!!)

Anyway... I met with Dr K to meet for the first time and go over my history, see how I was doing after my treatment in the hospital. It went very well! I was SO prepared to tell him very firmly that I am not interested in going backward now to discuss conversion disorder or all things psychogenic. I'm past that. I've been there and I will not return. I need a doctor who will steer my boat and move forward toward Diagnosis Land without any detours questioning my sanity or fragile state of mind.Just because I have woman parts doesn't mean I get hysterical illnesses.....

He promptly handed me a tissue and I blubbered like a baby.

After a mucousy recovery, I told him I realized I was not helping my case any......

He put me at ease immediately. He said his philosophy was to treat the whole patient. I'd be crazy if I wasn't feeling depressed or had mood symptoms after having siffered a real chronic illness after all these years, and particularly with NO diagnosis. (He looked even McDreamier than he did before)

FIRST he wants to start me on an anti depressant. He wants me to have a better quality of life and that's an easy way to get started. He also gave me an anti anxiety medication. I don't even have to take it. Just knowing it's in my cupboard may be all I need to feel calm. (Or I might take it. It's very mild.)

He would also like me to see a new neuro he thinks I'm going to like very much. I looked down in my lap. He took my hand and said, "I promise this doctor is going to take you seriously because I am going to make SURE he takes you seriously." He is on a team I am putting together for you. They are answering to ME. Tears again......

He said, I know you've been to a lot of doctors who have let you down. You have to trust me. I am going to find some answers for you and we are going to get you feeling better. I may not cure you. There may not be a cure. But we will do everything we can to giving you a better quality of life. I won't pull any punches with you. If you need to know something, ask me and I'll tell you. And you can reach me any time of any day. I felt obliged to nod, hoping there was nothing dripping from my nostril.

So, I asked....How did I get the diagnosis of Demyelinating Disease on my hospital visit? Was that you? He said, It was the strangest thing. I talked to Dr. E (my former neuro). He prescribed the 3 days of Solumedrol and since I was your attending, I had to write all the orders. I asked the reason for the (huge) dose of Solumedrol and he said Demyelinating Disease. I asked, Is it MS? And he said, No, demyelinating disease..

'It's so, so strange, because I have a few patients with other demyelinating diseases and we never treat them with high dose Solumedrol like that. We ONLY treat MS in that way. It was very odd.'

So, I said, What is YOUR impression of what this is, with my symptoms, but all these normal test results? He leaned toward me (was he going to kiss me? no.....) and looked at me directly and said, I'm concerned it's MS.

A wash of emotions flooded over me, but mostly I felt ...... relief.

He ordered a bone scan to see if the steroids have softened my skeleton at all. I've asked my neuro to do that....not necessary I was told. He ordered some other sort of check-uppy things. I feel like I'm in good hands and BEING HEARD.  I can't help but feel calm tonight and grateful to God for being so faithful. He's been carrying me all this time. And with all the steroid weight I've put on, that's no easy task! LOL

Take care and feel well,

Peace,

Zilla*

[rendean]

Hi, Ren here, not sure we've been properly introduced but I bow down to your strength and fortitude for all these years of suffering and enough roasted weenies to feed the whole forum.

I am so happy for you that you have a TEAM of doctors working in collaboration with Dr. McDreamy to help you have a better quality of life AND a diagnosis after all this time!!

So, since we celebrate with ice cream , do I get an extra scoop because you have hit pay dirt in the medical field? How much if I can still do a Snoopy dance??

I am glad someone took you seriously and is getting you the treatment all patients deserve.

Ren

[Starryeyes2]

Hi-So sorry to hear that you're in our "club" but I thoroughly enjoyed reading your entry. I normally don't laugh at what I read on here, so it was nice to have a giggle at what you're saying.

I hope you get all the answers you're looking for and start to feel better.

Hugs,
Kristi

[sadie405]

Hooray! This is the second time today I read about a compassionate, competent and mature doctor treating his patient with dignity and respect. Not to mention kindness. I have also been there with the unanticipated, unwanted blubbering. So glad he allowed it to be what it was-- a release.

Sadie

[Karen99]

Being "HEARD" is a wonderful thing.  I'd give him a kiss myself if I were there.  lol

And he's putting a team together for you.  Wow.  Good for him and really GREAT for you.

Thanks for updating us.  I'll have ice cream in celebration with chocolate syrup.

[Sumanadevii]

I am sad for your dx but know the relief that comes from knowing what it is you are battling.  Finally a name to put on it.  A word that shuts up the stupid friends that insist if you would only exercise, eat differently, meditate, pray, etc....you some how would function like you used to.....That is, of course, if they can even remember the "old" you.

Well, celebrate girl...at least you know.  It will hush some.  Might warn you will have others tell you that they know someone with MS that works, cares for eleven children, volunteers, runs in marathons and is nothing short of a saint...That is when you put your foot down....lol.....

And the compassion of your doctor?  Words cannot be expressed of what I think of him.  I almost wish you would show him copies of our compliments toward him.  What a gentle man.  I am so happy for you.

[essdipity]

Z, I'm SO glad you're finally getting somewhere. Please hold McDreamy to his promise of really coordinating your case and making things happen. It's true you may never get a dx or a cure, but this is your best chance, and I'm so happy for you.

Many others on our forum may not know Momzilla because she's an old-timer (forum-wise, that is), who has posted very little during the past few years. She actually does run a big household of five boys, goes to lots of their sporting events, works, and does a million other things to keep things running smoothly. All despite periodic attacks that put her in the hospital, with no answers till now.

You also should know that she's hysterically funny, and I miss that part as well. Our forum gets zany when Zilla's around, and we can use as much zaniness here as we can get. She gave us a hint of this regarding the dreamy doctor, so let's hope she stays with us this time for lots more, as well as lots more good reports about her medical condition.

I miss you, Zil, and am sending a gazillion good hopes and good wishes that things will be clarified and treatment begun.

Love,
~

[LisaJF]

The only reason why you may exhibit emotional lability or it is brought to a "head" is most likely the years of lack of empathy, disregard, dismissive behaviors from medical professionals due to the incompetence and ignorance.

Oh by the way, MS patients can display "hysteria" -- man or woman.  The responsible lesions that affect the mind are usually in the subcortical and pericallosal regions.  The personality may change in a subtle way. The lesions that separate and disrupt the integration of neural systems can reproduce almost any psychiatric disorder such as depression, anxiety, paranoia, obsessions, loss of inhibition and variations of neurosis.

I am very glad that you finally found someone who is "hearing" you.   To be heard, to have our symptoms be validated by a medical professional is beyond imagination.  Too often, and unfortunately,  many of us "sufferers" of neurosensory and neuromotor deficits are dismissed and laughed at behind our backs -- sending us to one specialist after another, or making us change our primary physicians because we feel abandoned one too many times.  These people are "our" Captain of our Ships so to speak.  They run the ship in the direction that is good for "us" not the easy quick way of ridding their patient.

Again, I am finally relieved to hear a good ending that you have found a capable MD, a compassionate MD and a MD who is willing to take the hard road through your journey with you by his side.  That's the way it should be.  At least I think so. I went into the medical profession because of that very reason.  I am unrealistic to think that everyone had the same initiative.

God bless you and know we are here for you at any time.

Lisa

[Sumanadevii]

So there!!!!!  The girl is an MS legend.  WOW!!!  

[Lulu54]

Z- I don't know whether to laugh or cry at your post.  Maybe both, and I don't have the emotional lability issues normally.  I have been rooting for you and the few others who were here when I first found this wonderful place, who remain in limbo.  

I want to cry with you and your doctor.  I also want him to plant a good kiss, just once, on you or me!  You make him sound like every woman's dream man, doctor or not.    As they say, just because we're on a diet doesn't mean we can't read the menu.  

This neuro better be all McDreamy says plus some.  I am exhausted for you and your journey.



hugs and more hugs, L

[Lulu54]

oh yeah - takes those antidrepressants and don't stop.  You have to be on them at least six months otherwise the depression rebound can be horrific and put you in an even worse place, according to my dream MSologist, who is not tall, dark or handsome but still perfect in every way that counts.

[supermum_ms]

ALL hail McDreamy!

WOW no wonder you bawled your eyes out, finally you've found 'the one' who's see's YOU! Hears YOU! Believes in YOU!

ALL hail McDreamy! LOL i'm so so pleased for you!

HUGS.........JJ

[sllowe]

Mama Z!!!!!!!!

He put together the Team! He asked you trust him! He's looking out for your quality of life! He's going to find answers whether there is a cure or not! And, he's Dreamy to boot.

Jackpot! You hit the biggin! I believe he was heaven sent, Zil, truly I do.

It's your time, and I'm so happy for you, and for him. You've both been blessed.
(((hugs)))

[Sidesteps]

I love internists. I saw an internist as well. He was very thorough and caring. He specialized in oncology though...I'm hoping to not see him again so I need to find me a general internist like Mr. McDreamy. :) ;)

I'm in limboland. This started only a year ago. I feel like the doctor's that are more skeptical and dismissive lends to my overall anxiety in dealing with them on my symptoms. It's odd. I know I'm not losing my mind but they certainly have a way of making you feel that way if they are cold an unreceptive. I can't even imagine encountering that for years. I'm sorry.

I'm also a Mamma of four and lead a crazy life myself --- work full-time, activities and family popping out the seams. lol ~ I am trying to focus on that and less on my the rollercoaster ride I'm on right now.

Take care of you. I'm glad someone is finally listening. Did I mention I love internists?  

[Wobbly]

wow... finally someone can give you answers... I'm glad you found some and have a direction.  take care and hang in there
wobbly

[drsdonthelp]

Ok, I want your doctor!!LOL I felt like I was reading a beautiful novel with a very happy ending. He sounds wonderful!!  I am sorry about the time you spent in limbo and now for "the concern its MS" but finally an answer!!

Goog luck to you sweetie, I wish you the best of luck!
Pam

[Deb61]

What a nightmare it's been for you for the last few years!  It's such good news to hear that someone is finally listening to you.  I'm pulling for you, honey!
Deb

[Guitar_grrrl]

Wow!!  I don't know whether to laugh or cry.  I'm sad you had to go through such crap, but I laughed out loud at your descriptions around Dr. McDreamy!

To Understanding Docs!
Cheers!

[Starryeyes2]

Hi- In re-reading my entry I realize I may have sounded insensitive. I just wanted to clarify that I didn't mean to say that I laugh at your situation or the things you have gone thru. I just appreciated your sense of humor in the way you wrote about it.

I hope I didn't offend anyone.

Kristi

[Momzilla]

Kristi, I loved your first response. I didn't take offense at all. I spent WAY too much time yesterday reading and re-reading all the responses. Thanks for yours!!

Zil^