BlsdMama Posted December 19, 2016 Share Posted December 19, 2016 My left leg is sitting here twitching like crazy. I finally admit it. I'm *really* scared. I can't run - gait is off. My left leg drags. I have clonus, though mildly. My left leg started twitching a little over a week ago -100, 200, 300+ times a day off and on. Tonight is the first time my right leg has twitched. My reflexes in my right leg are totally crazy hyper-reflexive. I have zero pain. I have negative MRIs (four of them) and a clean EMG so far. I will admit it, I'm really freaking out that I'm about to be diagnosed with ALS a week before my 40th birthday with little, little kids. I'm waking up in the middle night and not sleeping great. :( The neuro has referred me to U of Iowa because well, I'm *really* young. Those hyperreflexes? I'm just SO young she says. Yeah, on just the right side? I get the feeling this isn't good. Quote Link to comment Share on other sites More sharing options...
SparklyUnicorn Posted December 19, 2016 Share Posted December 19, 2016 :grouphug: I'm so sorry. I hope you get some answers and I really hope it's not too serious. 6 Quote Link to comment Share on other sites More sharing options...
AnnE-girl Posted December 19, 2016 Share Posted December 19, 2016 I'm so sorry. Praying that it is something else. 1 Quote Link to comment Share on other sites More sharing options...
fraidycat Posted December 19, 2016 Share Posted December 19, 2016 :grouphug: :grouphug: :grouphug: I hope you discover this is something treatable, and *not* ALS. 4 Quote Link to comment Share on other sites More sharing options...
Pawz4me Posted December 19, 2016 Share Posted December 19, 2016 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
snowbeltmom Posted December 19, 2016 Share Posted December 19, 2016 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
JonesinIndiana Posted December 19, 2016 Share Posted December 19, 2016 I'm sorry you're dealing with this unknown at this time of the year. You'll be in my prayers. Quote Link to comment Share on other sites More sharing options...
mom2samlibby Posted December 19, 2016 Share Posted December 19, 2016 Did you ever have your B12, iron, folate, and D levels tested? 2 Quote Link to comment Share on other sites More sharing options...
historically accurate Posted December 19, 2016 Share Posted December 19, 2016 Big hugs to you. I hope they diagnose you quickly with something easily treatable. Quote Link to comment Share on other sites More sharing options...
umsami Posted December 19, 2016 Share Posted December 19, 2016 :grouphug: :grouphug: :grouphug: I would be scared too. Google and support boards would make things worse, but I wouldn't be able to stop myself. I'm really sorry that you are going through all of this right now, especially right before your birthday and Christmas. I am adding you to my prayer list. When is your appointment at U of Iowa? I don't know about neurology, but I seem to remember DH saying that they have a really well regarding neuro-ophthalmology program. 2 Quote Link to comment Share on other sites More sharing options...
JoJosMom Posted December 19, 2016 Share Posted December 19, 2016 I will pray for your health and for peace in your heart. :grouphug: “Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid.†John 14:27 10 Quote Link to comment Share on other sites More sharing options...
Lanny Posted December 19, 2016 Share Posted December 19, 2016 If you have an issue that is complicated, the best possible place for you is in a hospital associated with, or run by, a Medical School. Take it one day at a time 6 Quote Link to comment Share on other sites More sharing options...
chiguirre Posted December 19, 2016 Share Posted December 19, 2016 :grouphug: Quote Link to comment Share on other sites More sharing options...
ktgrok Posted December 19, 2016 Share Posted December 19, 2016 Did they do the lower back MRI yet? 1 Quote Link to comment Share on other sites More sharing options...
Isabella Posted December 19, 2016 Share Posted December 19, 2016 Hugs :grouphug: Anything out of the ordinary at this time of year is especially stressful because of often not being able to get tests done so quickly etc. Praying that it's not too bad, and for strength for you this holiday season. Quote Link to comment Share on other sites More sharing options...
The Girls' Mom Posted December 19, 2016 Share Posted December 19, 2016 :grouphug: :grouphug: I'm sorry you are going through this. It is frustrating and scary. My dh has something neurological going on, and the docs can't figure it out either. We are waiting on an appointment in February while symptoms build. Praying you get some answers soon, and some peace about whatever those answers are. :grouphug: Quote Link to comment Share on other sites More sharing options...
Storygirl Posted December 19, 2016 Share Posted December 19, 2016 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Um_2_4 Posted December 19, 2016 Share Posted December 19, 2016 :grouphug: :grouphug: Waiting is so hard. I am scared for one of my kids right now. We are awaiting test results that may lead to more tests and possibly major surgery if it is what I suspect it is. Part of me hopes I am right because it could solve some big issues and hopefully lead to a better quality of life, part of me hopes I am wrong. I am trying to be rational, but anytime the tumor word (even the benign type) gets thrown around, I kind of lose it. 1 Quote Link to comment Share on other sites More sharing options...
Cinder Posted December 19, 2016 Share Posted December 19, 2016 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
purplejackmama Posted December 19, 2016 Share Posted December 19, 2016 I'm sorry. Fear is a powerful emotion and I'm sure yours is through the roof. I hope you get clear answers soon and of course I hope it's good news! Quote Link to comment Share on other sites More sharing options...
Ellie Posted December 19, 2016 Share Posted December 19, 2016 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Kassia Posted December 19, 2016 Share Posted December 19, 2016 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Guest Posted December 19, 2016 Share Posted December 19, 2016 I would be scared too! Many hugs and hopes that you get some answers quickly and that it is treatable. Quote Link to comment Share on other sites More sharing options...
mommyoffive Posted December 19, 2016 Share Posted December 19, 2016 I would be scared too. I am sending all my good thoughts your way. I hope you get this figured out soon. Quote Link to comment Share on other sites More sharing options...
cintinative Posted December 19, 2016 Share Posted December 19, 2016 I'm so sorry. When is your referral appt or is that not scheduled yet? Waiting and not knowing is the worst. It is completely understandable that you are scared. Please keep us posted so we can be praying. Quote Link to comment Share on other sites More sharing options...
Caclcoca Posted December 19, 2016 Share Posted December 19, 2016 I am sorry! I would be scared too. I am praying that you get answers with an easy fix soon. Quote Link to comment Share on other sites More sharing options...
MercyA Posted December 19, 2016 Share Posted December 19, 2016 Did they do the lower back MRI yet? I was wondering this, too. Have they checked to see if you might have a tethered spine? Sometimes it is not discovered until adulthood. :grouphug: :grouphug: :grouphug: and prayers. Please keep us updated. Quote Link to comment Share on other sites More sharing options...
Annie G Posted December 19, 2016 Share Posted December 19, 2016 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
zoobie Posted December 19, 2016 Share Posted December 19, 2016 :grouphug: Quote Link to comment Share on other sites More sharing options...
KayT Posted December 19, 2016 Share Posted December 19, 2016 :grouphug: :grouphug: :grouphug: I'm sorry you are having to go through this. Praying for you. Quote Link to comment Share on other sites More sharing options...
UCF612 Posted December 19, 2016 Share Posted December 19, 2016 (Hugs) I will keep you in my prayers. Quote Link to comment Share on other sites More sharing options...
displace Posted December 19, 2016 Share Posted December 19, 2016 I'm sorry :( Quote Link to comment Share on other sites More sharing options...
Ali in OR Posted December 19, 2016 Share Posted December 19, 2016 Praying for you. Quote Link to comment Share on other sites More sharing options...
Joyofsixreboot Posted December 19, 2016 Share Posted December 19, 2016 (edited) It is so very hard to be scared. It feels so lonely. I'm praying for your health, wise doctors and your peace of mind. Edited December 19, 2016 by joyofsix 4 Quote Link to comment Share on other sites More sharing options...
Scarlett Posted December 19, 2016 Share Posted December 19, 2016 I would be scared too. I hope you get answers soon. Quote Link to comment Share on other sites More sharing options...
Scarlett Posted December 19, 2016 Share Posted December 19, 2016 I would be scared too. I hope you get answers soon. 1 Quote Link to comment Share on other sites More sharing options...
edelweiss Posted December 19, 2016 Share Posted December 19, 2016 I'm so sorry. I know the feeling of fear that you are experiencing and it is absolutely horrible. I will be praying for you that this is not what you fear. ((HUGS)) Quote Link to comment Share on other sites More sharing options...
emzhengjiu Posted December 19, 2016 Share Posted December 19, 2016 Praying for you. :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Guest Posted December 19, 2016 Share Posted December 19, 2016 I'm so sorry. Praying for you and your family. Quote Link to comment Share on other sites More sharing options...
Stacia Posted December 19, 2016 Share Posted December 19, 2016 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
lauraw4321 Posted December 19, 2016 Share Posted December 19, 2016 It's ok to be scared. Rest in the One who has overcome the world. 4 Quote Link to comment Share on other sites More sharing options...
Tanaqui Posted December 19, 2016 Share Posted December 19, 2016 *hugs* Good luck. Quote Link to comment Share on other sites More sharing options...
Alessandra Posted December 19, 2016 Share Posted December 19, 2016 (((Hugs))) Quote Link to comment Share on other sites More sharing options...
Selkie Posted December 19, 2016 Share Posted December 19, 2016 I hope you have your appointment soon and get some peace of mind. Having to wait so long to get a diagnosis must be so stressful for you. :grouphug: Quote Link to comment Share on other sites More sharing options...
Susan C. Posted December 19, 2016 Share Posted December 19, 2016 :grouphug: Does your insurance allow you to go straight to a specialist? Would you consider trying to get into Mayo? Its a bit of a drive... but its Mayo. 2 Quote Link to comment Share on other sites More sharing options...
regentrude Posted December 19, 2016 Share Posted December 19, 2016 Sending good thoughts Quote Link to comment Share on other sites More sharing options...
Zoo Keeper Posted December 19, 2016 Share Posted December 19, 2016 Praying for you. :grouphug: Quote Link to comment Share on other sites More sharing options...
happi duck Posted December 19, 2016 Share Posted December 19, 2016 (hugs) Quote Link to comment Share on other sites More sharing options...
Forget-Me-Not Posted December 19, 2016 Share Posted December 19, 2016 (((Hugs)))) Quote Link to comment Share on other sites More sharing options...
happypamama Posted December 19, 2016 Share Posted December 19, 2016 I'm sorry. I think heading to a teaching hospital is a very good idea. I definitely understand how scared and worried you are. The issues are worrisome enough but not having answers makes things even worse. 2 Quote Link to comment Share on other sites More sharing options...
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