[MClive]

Hi,

I'm new to the forum and thought I'd introduce myself and my current dilemma. I am 28 years old, and until recently, I have been quite healthy. Within the past four months, I have been diagnosed with MS, undiagnosed with MS, diagnosed with "clinically isolated syndrome" and again, diagnosed with MS. It has been a complete circus. I am about ready to give up, but the lesion in my head and the fact that I still can't walk sort of gives me some energy to keep searching for answers.

I just finished up six weeks in the hospital (brutal!)--two in an acute setting where I underwent every test my docs could think of to help them settle on a diagnosis, and then i spent four weeks in acute rehab, trying to regain the ability to walk.

In a nutshell, I have

* a "tumefactive" lesion in the left motor strip of my brain (3cm)
* oligoclonal bands in my CSF
* severe weakness in both legs (improved somewhat with IV solumedrol steroids at 1000mg/day for five days. I still require a walker/crutches to get around)
* a clean spinal MRI
* ACHR modulating antibodies (56%) (acetylcholine receptor issue, often associated with Myasthenia Gravis)
* striational muscle antibodies (1:120) (also associated with myasthenia gravis and thymoma or thymic carcinoma)
* extreme fatigue and head fogginess
* muscle and joint pain
* loss of function in my left arm/hand. (Improved with time and steroids.)
* a host of other unexplained symptoms and labs

The primary objective of those first two weeks in the hospital was to determine if the lesion in my head was a demyelination or if it was a lymphoma or other sort of tumor. Obviously a single lesion is atypical for MS, and the size is also atypical, at 3cm. The other issue was finding the source of my paraparesis (leg weakness). The left sided lesion with no spinal involvement doesn't really explain bilateral loss of function. I left that first hospital with three docs signing off on a diagnosis of MS, but as mentioned, that didn't really stick.

As of right now I have no diagnosis and I haven't found a neurologist who is willing to engage in my complicated case long term. I do realize that it can take a great deal of time to confirm a diagnosis of MS. I am hoping something about my case will sound familiar to someone who can give me some insight. Does anyone know anything about Tumefactive MS? Does anyone know of anything else that could cause a brain lesion, O-bands, and extreme paraparesis? Also, I have no clue how those Myasthenia Gravis labs play into things....myasthenia gravis shouldn't cause brain lesions or O-bands, and I don't have any facial or ocular weakness at all.

It's all so confusing, and I'm emotionally exhausted from this whole thing. If anyone has any thoughts or suggestions, I'd love to hear them.

Thanks!

Mandy

[mrsD]

Welcome to NeuroTalk.

I cannot comment on your MS testing, but I am sure someone will be along to help you with that.

But looking at your profile and sudden onset, I have to wonder
if you have received alot of vaccines prior to the onset of this sudden medical crisis? Vaccine injuries also respond to steroids.
Vaccine injuries are more common than most doctors think IMO.

[SallyC]

Hi again Mandy. I had never heard of Tumefactive MS, so of course I asked Google... From what I understand, they found a large lesion that looks like a tumer. It is a very hard MS variation to DX and so you are usually put in limbo for awhile.. - meaning, Neuros don't know much about it, so they protect their rears by not quite diagnosing you yet..

Glad you're here. Stick around and bring us up to date, as to your medical treatments and such.

[Erin524]

Tumefaction:

1.
a. The act or process of puffing or swelling.
b. A swollen condition.
2. A puffy or swollen part.

http://www.thefreedictionary.com/tumefactive

Apparently doesnt necessarily mean "tumor". It's another word for "swelling".

[ANNagain]

Hi Mandy and welcome

As one who was first hospitalized at 21 and then dx and undx a few times, I certainly feel for you. It's crazy-making!

I think the most important thing is to keep seeing the same specialist so s/he can see how the disease behaves over time. This is what helped me.

I'm sure you know that MS is a dx of exclusion and you seem to have had a really good work-up on that front.

The other thing is that if you have one auto-immune disease there is an increase possibility of having a second. So MG and MS are an unfortunate possibility.

Best to you and please hang around and let us know what is happening,
ANN

[MClive]

Thanks so much for the thoughts, everyone!

MrsD--I haven't even had anyone suggest the vaccinations thing. Very interesting. But unfortunately (or fortunately!) I don't remember the last time I had vaccinations. I think it was five years ago, and they were just regular boosters.

SallyC--you are exactly right on all counts!

Erin--you are right too. Tumefactive doesn't mean tumor. It's just a word they use to describe a single large lesion, especially in an MS context, because it is unusual to present that way.

Ann--thanks for the input, I'm sorry to hear you've been through a similar nightmare. I think you are right about having the same doc to follow me. I just need to find a good one. My six weeks of hospitalization brought me four different neurologists (I was transferred to a different hospital for rehab). And I have seen two MS specialists since. The first specialist was a total jerk and said there was no way this was MS and when I asked what he thought it was, he said i am a very complicated case and there is no way to tell right now. Rather than taking it on as a challenge or offering to help, he completely checked out. The next neuro I saw was equally rude, short, declared that this could absolutely be MS and said come back in a month. He rudely dismissed all my questions, told me to stop stressing out, and he'd see me again in a month. He spent about five minutes with me in total. I was actually quite shocked with his approach. Even if he doesn't know what is going on, he could have taken a little more time or at least been a little kinder. So I need to find a good doc. I am supposed to be getting a referral to Barrow's Neurological through a friend, so hopefully that works out better. I wish I could just drop the whole thing and avoid the neuros forever, but I guess that isn't realistic.

Thanks everyone for your thoughts and support. It really helps.

Mandy

[SallyC]

Your Neuro experience sounds usual, there are a lot of jerks out there. Good luck and good wishes with your search for a bright and yet compassionate Neuro.

And, please keep us up to date.

[MClive]

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

[mrsD]

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.

[SallyC]

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.