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coinlieutenant

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Good afternoon. My name is John Marburger. I am 42, a retired Naval Officer and cancer survivor with some oddities at that go along with it. Apologies in advance for the length of this post and MANY thanks in advance for those of you reading or responding to it, especially those fighting this disease. I watched my grandfather suffer from ALS when I was a boy, and it left a lasting impression. God bless each and every one of you.

To make a long story as short as possible, I was diagnosed with a rare form of leukemia in January 2015. Depending on which doctor you talked to, it was some combination of Chronic Eosinophilic Leukemia and Systemic Mastocytosis. I underwent an allogeneic (from a donor) stem cell transplant in November 2015 at Stanford.

Along the way of my leukemia diagnosis and transplant work up, I was having an array of symptoms that didn't match the leukemia. They were:

**Fatigue
**Some weakness/balance issues
**Brain Fog
**Fasciculations (Had clean EMG in July 2014. Doc performed due to family history of ALS and military service combined with fasciculations)
**Migraine with aura
**Pain and stiffness
**Moderate hyper reflexivity

A transplant preparatory MRI revealed lesions on my brain in the areas that would suggest MS. A lumbar puncture revealed oligoclonal bands in my spinal fluid and further MRIs revealed a progression of lesions that expanded into my spinal cord and brain. I was officially diagnosed with MS in the summer of 2015.

Because of the risk of an allogeneic transplant, MS is nearly never treated with that type of transplant. But since the leukemia was the most pressing disease of the two, they went ahead with the transplant.

You get a new immune system when you receive an allogeneic transplant, and since MS is an autoimmune disease, both my hematologist/oncologist and my neurologist said that if I survived the transplant, I would be cured of both diseases. Amazing where life takes us.

I was blessed enough to make it through the transplant with relatively few side effects.

The good:
**Blood went back to normal
**Migraines and fatigue stopped
**Heart condition (caused by eosinophils) resolved.

The not horrible but not great:
**Twitches remained and came and went (diagnosed with BFS)
**My donor's cells continue to not recognize some of my body and I deal with some mild Graft versus Host Diseases (GVHD). Primarily affects my eyes.
**Peripheral neuropathy in left foot and other parts of my left body that seem to be residuals of the lesions that remain on my brain and spine.

All in all, I am not as good as I once was, but I'm as good once as I ever was. :) Until this past November around Thanksgiving...

The twitches returned for the first time in over a year, with a vengeance. All over my body. Since I had to deal with this in the past, I largely ignored it. I did a pretty good job of it too, until I went skiing with my family over the New Years holiday. I found myself having a hard time turning to the right on my skis. My instructor even mentioned how dominant I was on my right side. The twitches got even worse and I started to wonder about the connection.

I then started realizing that I was fatiguing much faster than normal. Hiking, lifting, typing etc. Mostly on my right side.
Along the way, started developing some of the old spasticity like I used to have, but more in the legs than the back where it was before.

In the last two weeks, I've added another symptom, which is a tightness that doesn't reach the level of cramping, but is close. It is painful in its tightness, but doesn't put me out of commission like a normal cramp.

In order to conclude sooner rather than later, the symptoms that are concerning for ALS are:

**twitching/cramping
**perceived (not clinical) weakness
**Spasticity and fatigue that is more after workout
**Hyper reflexivity that may or may not be an artifact of the prior MS.

Phew! I know this is complicated. I have already scheduled a visit with my Stanford neurologist for March 13th because I feel I can't ignore all of these things anymore.

Finally, for completeness, prior to my cancer and MS, I was generally never hypochondriacal. Post transplant, given that the chances of having CEL and MS at the same time were 1 in 4.4 Billion, I am always looking for a snake in the grass, within reason. I know ALS is rare, but I'm sure you understand where I am coming from.

Any thoughts on this situation would be greatly appreciated.

With the utmost love, respect and empathy to you all.

John Marburger
Commander, USN (ret)
 

affected

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Honestly mate, with all that epic story you think strangers on the internet can tell you what is going on?

Best of luck with your doctors who are the only ones that can unravel this with you. Short answer tho - you didn't describe ALS onset.
 

lgelb

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Between BFS, GVHD and residual brain lesions/peripheral neuropathy, the new sx you describe don't seem to necessarily relate to any new basic issue. But of course after seeing the neurologist who has your baseline strength, etc. documented, that will be clearer.

Agree with Tillie you are not describing ALS and hope the leukemia/MS remissions continue.

Best,
Laurie
 

ThroughThatValley

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Hi. Nobody's going to dare a diagnosis here. You have to confer with your doctors to clear things out. I wish you the best of luck. Hang in there.
 

coinlieutenant

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@affected, @lgelb and @throughthatvalley,

Thank you for your thoughtful responses. When I was sick before, I always said that my case was very interesting, but would be more interesting if it wasn't happening to me. ;) I am a scientist and a data guy so it is always interesting and perplexing at the same time.

I will keep you all updated and all those affected by ALS in my prayers. Hopefully will get some answers soon or have this stuff resolve on its own.

All the best,
John
 
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