Update on my Tumefactive MS
 

Hey everyone, just wanted to say thanks again for all the input before, and give a quick update on my MS mystery.

The quick update: I have found an AMAZING neurologist (I'm sooo grateful!), I just finished a week of plasmapheresis, and I have officially been diagnosed with Tumefactive MS.

The detailed update (from my Blog) Blog: mandyhealth.blogspot.com

Blog Update. Feb 9th, 2012

First off, my new neurologist (Dr. Darin Okuda from the Barrow's Neurological Institute in Phoenix) is amazing! He is everything I have been hoping and praying for. He is smart, compassionate, charismatic, took time to explain my case and his thoughts, and also explained exactly what he was looking for and noticing while he did my neuro exam!! (please note my comments about this in the last post. Lol...This was too perfect!) After the exam, he took my mom and me into his office where he taught me several things about reading my MRI, which I loved. The biggest news of all? This doctor is so smart and experienced, that he isn't baffled by my case at all! He explained exactly what he was looking at, how he thought the many puzzle pieces fit together, and why he was thinking what he was thinking!....and best of all, he was confident in his assessment. Up to this point, doctors haven't been able to do much more than exclaim about my unusual case and how they wish they had answers for me. I am so grateful to have found this neurologist! For anyone wondering, he is Dr. Darin T. Okuda. Thanks to everyone who was praying for me to find an amazing, and helpful doctor. That prayer has been answered!

This doctor's conclusions:

This isn't typical MS. The lesion is a demyelinating lesion, and the disease is in the MS family. The disease is called Tumefactive MS, and it is fairly unusual. Like regular MS, it can have a one time episode and never come back, or it can reappear in 15-20 years, or it can convert to more traditional relapsing-remitting MS. His goal is to make sure I stay in the first category!

When it comes to considering a biopsy of the lesion, the doc pointed out how the lesion is respecting the folds in my brain, not crashing through them, even though it is growing. He says that makes him confident that it is not a tumor. He does acknowledge the possibility that he could be wrong, so we will repeat the MRIs monthly and then bimonthly to keep a close watch on things. He thinks that the spinal MRI's we have done were not sensitive enough, so we will be repeating that tomorrow.

Take Aways

The biggest take-away was not only a working diagnosis of Tumefactive MS, but also an assessment of where the lesion is at. He showed me the different views of the MRI scan, and how it is still lighting up under contrast. A demyelination shouldn't do that unless it's still active and growing. It is unusual that this lesion is still growing, since we already blasted it with 1000mg of solumedrol steroids every day for a week, and prednisone for four weeks! But it's still active, and he said our primary focus right now needs to be getting that lesion under control. So he proposed admitting me to the hospital for another round of steroids, and plasmapheresis. Has anyone ever seen or heard of plasmapheresis? It makes me sick just thinking of it. Tomorrow morning they are going to take me down to the immuno-hemo-something-or-other center and put a tube through my neck and INTO MY JUGULAR VEIN! Any guesses why I'm not sleeping right now?? Plasmapheresis is pulling your blood outside of your body, separating the plasma from the red blood cells, removing and discarding the plasma, and then putting the red blood cells and a plasma replacement back into the body. It has been shown in many studies to reduce the severity of MS and MS lesions, and also clears the body of unwanted antibodies. Crazy stuff. I hate regular needles and IVs...this one scares me to death!

The Game Plan

1. Admission to hospital for plasmapheresis and IV solumedrol steroids. I'll have five days of plasmapheresis, starting tomorrow.

2. Repeat the spinal MRI tomorrow, to get a clearer image

3. Monthly and then bi-monthly MRIs to monitor the lesion

4. Any other follow up that comes as a result of things learned here in the hospital

I will try to write more about todays events when I am not so tired. And you can be sure I will be writing an update about my first day of blood letting tomorrow!

Till tomorrow,

Mandy

Thank you for the update. So glad you found a doctor who you can trust and understand.

Our myasthenia gravis forum has patients who have had plasmapharesis.

Also it is done in GBS neuropathy.(Guillain-Barré Syndrome).. a friend of mine had it.
It can be very very effective. It removes troublesome antibodies that are attacking nerve tissue.

It sounds worse than it really is, from what I have seen so far.

Good luck, and hoping it works well for you.

Thank you Mandy for the update. It sounds like you are in good hands. I'm happy for you.

Let's hope and pray that this round of treatment stops that active lesion and you feel better soon.:hug:

I was diagnosed back in 1997 with only one lesion. So of course they had to call it clinically probable MS. Through all these years I still have that one lesion. My neuro was considering after many years of wondering if it was something else but then I had optic neuritis. So i have had 3 exacerbations with this one lesion and so I now have a definite diagnosis.

So glad you have a good neuro. Mine is the kind that as she examines me or looks at MRI's she thinks out loud. It can be comical to be in the room with her. Now their office has this computer system that as she examines me she stops and dictates a bit. Examines me some more and dictates into her little machine some more. I can really know not only what she is thinking out loud to me but what she actually puts down in the record. As an ex RN I know that what a doctor says to a patient isn't always what they put in the chart.

Good advice, Goldie. I may have to follow that advice. My first neuro out of Northwestern(Chicago) was good and teaching hosp. but was too far and in congested downtown Chi.

So glad you found a good doc...good luck on the treatment schedule. I pray it works for you...
please keep us updated on what's going on...:hug: