Long story short

[Vickie]

Hello,
I am a 32 y/o woman, and I run marathons recreationally. I started noticing some very occasional trouble getting my left leg to work right during runs in 11-12/2011. It was what I would decribe as extremely mild. It only happened several miles into a run and was really just a feeling that my left leg wasn't acting quite right or like I was having to try way to hard to move it. In the beginning, this feeling was very short lived, and I was able to continue running. Usually by the end of a run, I would have gotten passed this feeling. I started noticing occasional clonus in that leg when seated if my foot was in a certain position. Otherwise, things were good and I was increasing my mileage. I ran 8 miles on 12/10, 16 miles on 12/11 definitely with that feeling occasionally, and did not run for 3 days thereafter because I felt as if I had come down with a mild viral syndrome. When I tried to run again, I had marked difficulty with the need to stop after 2 miles and marked shaking of the left leg even in a standing position when my heel was lifted off the ground. I have not been able to run more than 2 miles without stopping since. It feels like my left leg becomes clumsy/hard to control/stiff. This resolves quickly with brief walking but continues to recur more rapidly if I continue to run. I have seen 2 neurologists. I have sustained clonus at the left ankle, a few beats on the right, diffuse hyperreflexia which I want to say I have always had, and a Hoffman reflex in my upper extremities bilaterally. I have a clean MRI of the brain and spine as well as a normal looking NCS/EMG. I started having random muscle twitching in 01/2012 that seems to have worsened recently and has been in many places but a lot in my left foot over the past 4 days. I should also say I had a lot of trouble swallowing solid foods in 09-10/2011 but this seemed to improve on nexium twice daily and was attributed to gerd. I am wondering is there a chance that I have motor neuron disease and it is just too early to tell. For instance, maybe right now I have only upper motor neuron issues that can be seen. One of the neurologists I saw said it could be PLS but he reffered me to the second one who actually specializes in neuroimmunology/myelitis I think with the thought that the "viral syndrome" could have been associated with a myelitis. The myelitis doctor did not think I had a myelitis. My impression is that they don't know what to make of me. They want to observe me over time.
Thank you for reading this and thanks so much for any information/advice

 

[kmendsley]

Sometimes waiting is the only thing one can do. Because all your symptoms and tests...my goodness you got all those tests done quite efficiently...were in a small period of time it is hard to know for your doctors if this is just a result of the virus that will get better with time.

As for your EMG...it was clean! That is wonderful and should be pointing you away from ALS...not to it. And no, it is not too early to tell because problems will show up on your EMG even before symptoms begin ..and you had symptoms before you got the EMG...so that is not it.

Give your body some time to recuperate from whatever attacked you in the first place. It sometimes takes months for a full virus to get out of your symptom. In the mean time, if you are really bugged with the lack of running, ask your GP for a visit to a P.T. for evaluation and therapy.

Try and relax, and wait for the next appointment when it comes. If you are better..great! Problem solved...if not, your specialists will start to order the appropriate tests and you can ask more ?s then

 

[trfogey]

Sorry to hear that you're in diagnostic limbo. Sometimes, time is the only thing that can make things clear enough for a definite diagnosis to be made. It's only been a couple of months.

 

[Vickie]

Ok, thank you both so much for responding. I will just wait and see. I was actually surprised how fast I got over not being able to run. If you had asked me a year ago, I would have thought that would have devastated me. But as it turns out, running is not the most important thing, and the strength of a marathoner is all in the mind. I think that the thing I really liked about running marathons was overcoming adversity-every runner (elite and first-timers alike) gets to that point in the race where they feel as if they cannot go on. We all run marathons in life as we face adversity. And you 2 are certainly running your own marathons right now and hopefully finding you are stronger than you ever imagined. Cheers to that.

 

[Toto's Dorothy]

Vickie,

I just noted that you are from Baltimore, MD. I would ask for a referral to Johns Hopkins. They have been voted #1 hospital in the US (21 years straight through US News and World Report) and definitely # 1 in neurology. Going there would calm all your fears. But expect about a 6 month wait. Good Luck to you.

 

[notgivnup]

Vickie, hang in there, it may take awhile to get a diagnosis. They will leave no stone unturned to get to an A L S diagnosed. I hope and pray it is something curable or tretable. Keep us posted. One day at a time, in Liimboland. Take care and try and not to worry.