Finally....A Diagnosis

[monotreme]

For all of the forum members that have followed Craig's story since August, 2007, I wanted to let you know that he finally got a diagnosis today at NYU  MS  center.   Things have been declining for Craig since November 2004, with lesions and brain atrophy since 2006.   He had gone to Mayo Clinic, Mellen Center at Cleveland Clinic, National Institute of Health, and four other MS neurologists.  Doctor shopping some would say, but I am a nurse and I wasn't going to let my husband  go downhill without a fight.

All of them saw the positive Romberg, the leg weakness, the loss of balance, fatigue, heat intolerance, etc.  But he was told it was depression, "in his head",  referred to Parkinson neuros who turned around and said go to a MS neuro, and was even accused of causing his own leg spasticity.  So we have been demoralized and thrown out of more than our share of  neuro offices.    

But thanks to Quix and some others on this forum, we felt support and knew enough to keep on.  So, after a four month break from neuros, I made him an appt at NYU.  I have seen Craig deteriorate neurologically  and especially in the last year.  He can't run, jump, or swim.  He can only walk a few blocks without pain.  He can't be out in the heat at all this summer.  And I saw Joe Anthony's post about Dr. Herbert at NYU and that he was the one who diagnosed Montel Williams.

So with nervous stomachs, we went to the appt.  The neuro (Herbert's associate), listened patiently to our story.  He read every report, even noted the IGM monoclonal proteins in his CSF...the other neuros ignored this.  He gave Craig a thorough neuro exam and was the first one to actually acknowledge the "0" score for reflexes below the knee.   He was so alarmed to see that Craig could not walk one foot in front of the other...NYU uses tandem walking as a measure of neurological deficit and Craig could only take two steps.

So in the end, he thought, and thought.  He looked at the brain MRI films..  He noted that Craig has small lesions...but said that  YOU CAN HAVE MS WITH ATYPICAL BRAIN LESIONS.  YOU DON'T NEED NINE OF A CERTAIN LENGTH ETC.   He noted the normal LP.  Then said YOU CAN HAVE MS WITH A NORMAL LP. AND  IN EUROPE, THEY DON'T EVEN COUNT LP RESULTS IN MAKING A MS DIAGNOSIS.

HE SAID THAT YOU HAVE TO LISTEN TO THE PATIENT'S HISTORY AND LOOK AT THE PATIENT'S EXAM.  

Wow, did I hear that right??  Does he know Quix????      

He told Craig that the only possibel disease he could have is MS.  And most likely Primary Progressive MS.   He said that NYU has done their own trials showing that Copaxone helps stop the progression of PPMS in men.  Not for everyone.  But it is worth a try.  He said PPMS acts like a recalcitrant child to treatment.  He will also consider steroid infusions if the spine osteoporosis is improving.  He ordered evoked potentials too.

We did not go to NYU with all of the other neuro reports.  We went with two.  He had no problem with the fact that we had gone to other places.   He felt bad for Craig that he has had so much decline and had no treatment for it.  That is one reason I think, that he went ahead and ordered the Copaxone right away.  Craig will be on it for three months, and then will go back to NYU. to see if he has stopped getting worse.

I want to thank Quix for all of her knowledge.over the past year.  She is right on with this MS information she gives us on this forum.   Without her, I don't know what would have happened to Craig and I as each neuro told Craig that he has a mental problem.  That can destroy a marriage as well as the person who is being told this.  In fact, NIH had a psychiatrist  come into the room when Craig was there and would have put him in a straight jacket and retained him if they could legally do so.  I had doctors coming in to the room with me alone and they actually surrounded me and told me that my husband was not mentally competent.  All of this because he did not meet their criteria for a study they brought him in for.   One doctor at NIH wrote a report that Craig most likely had PPMS, but the others ignored it and chose to attack and frighten us.  And that entire time, Quix and this forum was there for us.  A beacon of hope and a refuge for all in limbo.

Thanks also to Zilla, and Heather, Rena, T-Lynn, Penn, Maggie, and so many others who have listened to us mope and whine and plead for understanding and support.   There is no way we could have made this journey alone.

And for all of you limbo landers...keep on going to doctors.  Don't take more than one or two reports from other neuros.  Trust yourself and your instincts.  And have faith that God will lead you to an answer.

And thanks JoeAnthony for mentioning NYU on the forum.

Elaine

[Heather3418]

Happy Anniversary to you both.  Thank the dear Lord that Elaine pushed and pushed until there were answers.  Craig will soon see, that he literally owes his life to his precious wife.  I really believe that.  Elaine, you are nothing short of an angel in disguise...

Heather

[cjacks]

Elaine and Craig

What GREAT news .  You have been put through the wringer and now have some answers..  BRAVO to the doc at NYU .

  Now you can devote your precious energies to fighting MS instead of searching for someone to listen and validate .  I'm so happy for the both of you.  

Craig is very lucky to have such a strong wife .  What a wonderful and courageous woman you are.

The Copaxone gives hope (  HOPE  ) , which is just about all we could dream of asking for .  Now I need a tissue ..  :)  I started mine a month ago .   I don't feel better yet , but I'm doing something , I'm able to fight the disease .  This all takes time to sink in .  I had been going though some of the stages of grief before the dx. ..  now I'm numb .  I imagine Craig will be going though some emotional stuff .  He just need time to process.

Let us know if you need any help , advise with the Copaxone

Congratulations an the anniversary !  

Big hugs to you and Craig

Jo

[Heather3418]

Amen and amen...I'm afraid that all I can muster to write right now, is that I am filled with tears.  Sad and happy tears.  Rena, I too, feel that lump in my throat.

All my thoughts and prayers,
Heather

[spastic]

  Oh Sweetie, I don't know what to say.  I am happy and so sad at the same time.  I am happy you you guys to finally have an answer that makes sense but I am oh so sorry that its MS.  But now, he can finally start getting some treatment.  My heart goes out to you two.

I am so glad you two have each other and with that HAPPY ANNIVERSARY!!!!  You two are special, meant to be, like two pieces of the puzzle, locked together, in loving marriage for all of eternity!!!!

Love Ya Both,

Ada

[speechgeek]

Elaine and Craig

I am so happy that someone finally listened and help is coming. You both have just kept on pushing thru all the brick walls and disappointments. I know this is a double edge sword....hang in there.  Your story has and will continue to inspire others not to give up! Your family is  in my thoughts and prayers.

Rebeccah

[LLWB]

Thank the Lord for this wonderful man. Isn't it awsome what God does in our lives? I too had to reach for the hanky halfway thru reading this wonderful news.  At least now drugs can be given, treatment started, and the endless search for answers is over. Now Craig, and you can concentrate on doing the very best that you can do to maximize what healing can be gained from the medications, and a major reduction of stress. Just your tireless search for answers has to have worn you both out. Take time together to just talk and love each other. It's so important.

God Bless you both and your family. Love,

Maggie