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

[Amyloo]

I've never posted to you before, but am familiar with your story.  Praise God for your answer, I am sorry you had to wait so long, and I am glad you will get a DMD.

Love to you both,
Amy

[Quixotic1]

Wow!  What a relief for both of you to get the searching over and be able to move onto the the next steps.  I suspect, knowing Craig, that he is not taking this well.  I understand.  No matter how much you want to stop the doubting and how much you hate the dismissiveness, once you hear the words you can't help but, be angry and grieved.  I also bet that this places into sharp contrast the neuros that blamed Craig for his own problems.

I will be looking for some of the studies on Copaxone, men, and PPMS.  I wasn't aware of this.  I feel for the first time there is some hope.  Not only that, apparently the docs in Delaware will now be more willing to treat him symptomatically.  That is great progress, too.

Tell us, how are you feeling now that someone (other than me and a couple other docs) have said the words and you can move forward?  You two have a lot of decompressing to do.  The next while may be simultaneously sweet and very hard.  I hope you let us help!

And thanks for your nice words about the information we give out and some of our strong opinions here.  I'm sure that it helps the new people accept our advice.  You are sweet.

Tell Craig he is in my constant thoughts.

Quix :))

[Deb61]

It feels good, doesn't it, when you finally feel listened to--validated, reassured, and most importantly hopeful again.  I am so happy for you guys!!!!!  

The Copaxone will be a snap---especially with you and your nursing background.  The pain is a little worse early on in treatment, but it gets way better as time goes on . For me, the after shot discomfort has turned out to not be any problem at all and doesn't cause any side effects, either.  Plus, who knows, the oral medication may be out really soon . . .

Congratulations on having your hope restored.

Deb

[Lulu54]

Elaine,
From your writing tonight I can tell Craig is sure lucky to have you in his life and you are so fortunate to have him in yours as well.  I am really new to this site but have already found the support and wisdom that I will need to wander through limboland and come out on the other side intact, just as you have spelled out here. Your story tells me a lot, teaches me a lot, and touches me even more.

Thank you for sharing it here.

My heartfelt best to you and Craig,
Laura

[mokibear]

Oh thank goodness, someone finally listened!!!! What a relief for Craig and yourself. I'm so happy that Craig finally got the diagnosis and that he will be starting treatment. This has been such a long haul for you both. I'm just so glad you never gave up. It does give a limbo lander such as myself hope that answers may still come.

My thoughts and prayers are still with you both and I hope that Craig gets some relief after he starts his treatment.

Hugs
Moki

[shoshin]

Your story has been heartbreaking to read and it's wonderful that you finally found a doctor willing to pay attention and think things through with an open mind. I'm so glad you have a dx and some possible treatment and I hope that the Copaxone proves to be helpful.

sho