Atypical MS? Tumefactive Lesion?
 

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

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.

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

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

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".

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

Re:
 

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

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. :hug:

And, please keep us up to date.

I found this resource for you:

http://www.drgarysmultiplesclerosisc...egory/ms-types

It is pretty long and complex. However, this entry seemed to match your acute onset:

Doctors typically do not acknowledge vaccine injuries. We see this on our Peripheral Neuropathy board. Your travel history suggests you may have picked up some infection, etc that is now assaulting your immune system.
Autoimmune disease in general is a response some people have to vaccines or infections, and can be genetically inherited.
For example, the Lyme vaccine cause severe autoimmune arthritis in patients with certain genetic markers on their white cells.
Others were unaffected.

So please keep an open mind and think back what triggered you.
You have a sudden onset... and if you find the trigger, you may find more effective treatment.
Here is an example of toxoplasmosis lesions in the brain.
http://emedicine.medscape.com/article/344706-overview
This may be contracted from cat feces or on farms.

Sometimes finding a cause does not happen. But it may help to think about it, just in case there may be a clue somewhere.
One can get so drowned in symptoms, that things are not discovered.

Re:
 

MrsD, thanks for taking the time to share this info. Lots to think about. I have tried hard to think of possible triggers that could have led up to my sudden onset. Two of the weeks I spent in the hospital were with an infectious disease doc who was looking for anything and everything infectious that could have caused my brain lesion or other symptoms. She ran so many tests that on one of those days she drew 29 vials of blood. And that was just one day!

I haven't been out of the country in over a year, but I think you are right that it is possible i picked up something that has been dormant for awhile. Hmmm. I was in some pretty remote countries.

Thinking about things that preceded the onset: i took a trip to california, but only saw the beach and Disneyland. Other than that trip, I had been so busy at work that I hadn't been far outside of my office building or my apartment complex for months. I live in phx and i have no farms or strange animals around. I don't even have pets.

I just don't know. Thanks for chiming in on the mystery. I really appreciate having people to brainstorm with.

Mandy

Teaching hospital
 

Mandy,

I have no idea what you have, but my advice is to find out who the best neuro is at the most prestigeous(sp?) university with a medical school that you can find nearish to you, then get in to see them.
I don't know where you are, so I can't be more specific, but San Fran, LA, perhaps Seattle, would be good places to try if you could manage it.

Doctors who do research, which is what you should find if you do this, are more curious and patient than a standard neuro, even an MS specialist. You may not even need an MS specialist, perhaps a different sub-specialty would be better, like a neuro-immunologist for example. Those are the kind of docs that you can only find at universities usually.

Since you mentioned foreign travel, you should also consult with a really good infectious disease specialist.


Best of luck, I hope they figure it out for you.

Goldie

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: