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tinmanjack

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Joined
Jan 14, 2016
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Reason
Learn about ALS
Country
US
State
PA
City
Pittsburgh
Hello, first, let me just thank you for being willing to have a place where you answer questions from people who are often suffering from health anxiety.

Second, I am suffering from health anxiety. I freely admit that up front, even to my doctors. I have a doctor that understands that anxious people can get sick too, and doesn't just dismiss me. She doesn't just pacify me either. I am thankful for that.

Third, I have read the stickies, multiple times. These are wonderful and have helped me to maintain my sanity, and I thank you all for that. What I am posting here today is maybe more for others like me who come here, than it is for me. I would appreciate any thoughts you have, but please, I do not mean to impose.

My symptoms:
Nov '15 - Started with aching pain in both calves.

Dec '15 - After stress test (was also having chest pain, left arm pain, cardio ruled out as cause), started having more pain, upper right leg, both arms. Legs started feeling rubbery, heavy, clumsy. Started having twitching, first in upper right leg (backside), then spreading to calves, arms, and right hand (between thumb and pointer). Typing feels strange at times, as does walking. Experiencing weakness, but thanks to the stickies, I think that this is likely perceived weakness.

Jan '15 - Twitching has continued, pain has continued, heaviness (perceived weakness?) has continued, but settling into right leg and right arm/hand. Also, I'm obsessed with my tongue at this point. It twitches when I stick it out, but that's not at rest, so I think I am to ignore that. I could swear that it is showing some atrophy, but again, my higher reasoning tells me this is my mind playing tricks on me.

Other - I'm getting numbness in my ring and pinky fingers, primarily at night, but goes along with pain in arms. Again, the stickies say, the sensory stuff isn't ALS. Oh, and just because, I seem to have an upset stomach every monring. I have a history of reflux, for which I take meds, but this has been pretty consistent lately, which is unusual for me.

What I've done to get answers:
There's a whole side trip to the cardiologist and stress testing, but not really relevant, other than symptoms definitely got worse around the time of the stress test.

Saw my PCP in November and again last week. She obviously doesn't think it is ALS, but wanted to do the NCS/EMG. Not wanting to just have anyone do it, I did some checking around (again, thanks to the info on here, I was aware that you should be sure to go to the right place). Which led me to...

I saw a neurologist at UPMC Neurology (basically, the best we have in the Pittsburgh area) and he was very patient, understood my anxiety issues, but still took me seriously. He conducted his exam (primarily strength and sensory, didn't test reflexes). He said, my exam, my history, and my age, none of them say ALS. He then said, we have seen strange things before though, and getting piece of mind, ruling our the serious stuff, is a valid strategy. He agreed that the NCS/EMG would still be appropriate. That is scheduled for two weeks from today. (Side note: Another neuro did test my reflexes in early November. He was a headache specialist that I was seeing about migraines).

So, my NCS/EMG is scheduled for January 26th, and the EMG portion will be conducted by a doctor, in this case, the head of the UPMC neuromuscular diseases group. I am told that the doctor will give me results right there and I will not need to wait to hear from the ordering doctor. I will also have a follow-up with a general neuro in March (the neuro I saw this week had a cancellation, but he is a seizure specialist). In other words, I am seeing the right people to get definitive answers.

As for my state of mind, I'm anxious and scared, admittedly without a truly rational reason. Anxiety is a strange animal. For those of you who are like me, suffering from anxiety but visiting this site, experiencing the kindness of the individuals here, please understand, the statistics are with you (the ones that say you probably don't have something really bad). You probably already know that, and you are probably still scared. It is very possible that you DO have something going on, it just is NOT likely to be ALS. It IS likely that your anxiety is making whatever is happening worse though. Again, you probably know all of this, but I personally found it helpful to hear/see those words myself. Hopefully this will help you too.

Again, to the keepers and regular members of this forum, thank you for your kindness in hosting visitors here.
 
Thanks for posting, Jack. Those details are very helpful. You're very bright, and I think you already know you don't have anything approaching ALS. You've got good doctors, so I'll just wish you the best.
 
Jack, Almost everything you mentioned is sensory and not movement related. Good luck exploring your health issues. It sounds like you have a great team to work with you.
 
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Thank you all (and thanks Nikki for fixing my computer blunder!)

The information that you provide here is very helpful for people such as myself. Your kindness and time is very much appreciated.
 
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