suzannj
Distinguished member
- Joined
- Jul 5, 2008
- Messages
- 121
- Reason
- Learn about ALS
- Country
- US
- State
- NY
- City
- Buffalo
Hi Everyone,
I haven't posted about anything going on with me in a while, but there's been a lot of progress since I've mentioned anything so I thought I'd give the latest, and as I said hopefully "final" update on my issues.
Super quick update for newbees: Started with a twitch (fasciculation) in my upper back in approx. May 2008. Within a short time they exploded EVERYWHERE. Cramps in my legs, perceived atrophy in my r.leg, limping due to the pain/cramping and non-stop fascis. Pain/cramping in the palms of my hands and soles of my feet. Moving months ahead - fatigue in my face, "tired" tongue, a choking feeling in my throat, extreme fatigue in my neck & feeling like I needed to rest my head to get relief.
GP and then Two separate Neuro's guesses along they way: "Could this be ALS in the very beginning of the disease? Yes - it could be, but I doubt it we'll have to see"; Lyme; Multi focal motor neuropathy; Nerves trapped in my lower back; and lastly - a mild case of Myasthenia Gravis . . . all ruled out one by one along the way. I must point out that my very first neuro, (who is an ALS expert of sorts) said after my exam and EMG/NCS that he was "100% sure (I) did not have ALS" . . . .but I did not believe him.
I have had: Multiple neuro exams; A TON of bloodwork; Two "regular" EMG's with Nerve Conduction Studies that only showed a mild neuropathy of my left leg (the one that wasn't even bothering me!); MRI of lower back; an SEPG test (I may have gotten that acronym wrong); MRI of my brain; and just yesterday I went to a university affiliated teaching hospital (i.e. not a "local" neuro) and had a single fiber EMG of my face and neck.
In the meantime per recommendation of my GP and my 2nd neuro, I started seeing a counselor and (to my great suprise because I never thought I would be on such a med) started on a low dose of Lexapro. I was/am open to anything that would make me feel better, and I'm very glad I accepted his advice.
Results of all this? NOTHING IS HORRIBLY WRONG WITH ME. Yes, I am shocked. The final opinion of my neuro is that this all could have started because of some random virus and/or a combination of that along with an extremely traumatic event that occurred about a month before all of this began, and this is essentially Benign Fasciculation Syndrome. It's been 10 loooooong months now since this all started and she said that alone is a major indication that whatever is going on is not ALS or anything else ominous.
Even last night when I was trying to sleep, my back and leg muscles were jumping so hard and so frequently I had trouble sleeping, not to mention the mild cramping in the sole of my left foot. So, like many others, I do feel guilty even posting this, and thinking so much: 'Why do I get a pass when so many others don't?' I wasn't even going to post this, but I did only because I hope it helps someone else.
In the end, I am definitely not leaving this site altogether. Because of all of this, I am going to continue volunteering with the ALS Guardian Angels, hopefully my winter 2010 fund raiser will be a success, and I swear on my life, if I ever win the lottery I will donate (almost!) all of it to ALS research
Thanks everybody,
Suzann
I haven't posted about anything going on with me in a while, but there's been a lot of progress since I've mentioned anything so I thought I'd give the latest, and as I said hopefully "final" update on my issues.
Super quick update for newbees: Started with a twitch (fasciculation) in my upper back in approx. May 2008. Within a short time they exploded EVERYWHERE. Cramps in my legs, perceived atrophy in my r.leg, limping due to the pain/cramping and non-stop fascis. Pain/cramping in the palms of my hands and soles of my feet. Moving months ahead - fatigue in my face, "tired" tongue, a choking feeling in my throat, extreme fatigue in my neck & feeling like I needed to rest my head to get relief.
GP and then Two separate Neuro's guesses along they way: "Could this be ALS in the very beginning of the disease? Yes - it could be, but I doubt it we'll have to see"; Lyme; Multi focal motor neuropathy; Nerves trapped in my lower back; and lastly - a mild case of Myasthenia Gravis . . . all ruled out one by one along the way. I must point out that my very first neuro, (who is an ALS expert of sorts) said after my exam and EMG/NCS that he was "100% sure (I) did not have ALS" . . . .but I did not believe him.
I have had: Multiple neuro exams; A TON of bloodwork; Two "regular" EMG's with Nerve Conduction Studies that only showed a mild neuropathy of my left leg (the one that wasn't even bothering me!); MRI of lower back; an SEPG test (I may have gotten that acronym wrong); MRI of my brain; and just yesterday I went to a university affiliated teaching hospital (i.e. not a "local" neuro) and had a single fiber EMG of my face and neck.
In the meantime per recommendation of my GP and my 2nd neuro, I started seeing a counselor and (to my great suprise because I never thought I would be on such a med) started on a low dose of Lexapro. I was/am open to anything that would make me feel better, and I'm very glad I accepted his advice.
Results of all this? NOTHING IS HORRIBLY WRONG WITH ME. Yes, I am shocked. The final opinion of my neuro is that this all could have started because of some random virus and/or a combination of that along with an extremely traumatic event that occurred about a month before all of this began, and this is essentially Benign Fasciculation Syndrome. It's been 10 loooooong months now since this all started and she said that alone is a major indication that whatever is going on is not ALS or anything else ominous.
And for the FIRST TIME . . . I actually believe her.
Even last night when I was trying to sleep, my back and leg muscles were jumping so hard and so frequently I had trouble sleeping, not to mention the mild cramping in the sole of my left foot. So, like many others, I do feel guilty even posting this, and thinking so much: 'Why do I get a pass when so many others don't?' I wasn't even going to post this, but I did only because I hope it helps someone else.
In the end, I am definitely not leaving this site altogether. Because of all of this, I am going to continue volunteering with the ALS Guardian Angels, hopefully my winter 2010 fund raiser will be a success, and I swear on my life, if I ever win the lottery I will donate (almost!) all of it to ALS research
Thanks everybody,
Suzann