idnib Posted December 19, 2016 Share Posted December 19, 2016 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
J-rap Posted December 19, 2016 Share Posted December 19, 2016 Unknown health concerns can be so scary. I hope they get you in soon so you can get answers soon. I'll be praying that it's nothing much at all. Quote Link to comment Share on other sites More sharing options...
Twigs Posted December 19, 2016 Share Posted December 19, 2016 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
NorthwestMom Posted December 19, 2016 Share Posted December 19, 2016 :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 would be scared too. And here is what I will tell you. Naming the cause won't make it worse. It is the only way you can find out what to do ... if anything. I'm telling you this as the first person to stick my head in the sand. I'm not very brace, even when I know that knowing is power. (((you))) Quote Link to comment Share on other sites More sharing options...
Mabelen Posted December 19, 2016 Share Posted December 19, 2016 Praying for you that you have an answer soon and that you heal. Hugs. Quote Link to comment Share on other sites More sharing options...
Amira Posted December 19, 2016 Share Posted December 19, 2016 :grouphug: Quote Link to comment Share on other sites More sharing options...
Another Lynn Posted December 19, 2016 Share Posted December 19, 2016 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
ikslo Posted December 19, 2016 Share Posted December 19, 2016 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
marbel Posted December 19, 2016 Share Posted December 19, 2016 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
luuknam Posted December 19, 2016 Share Posted December 19, 2016 :grouphug: IF you have that, maybe being young gives you a better prognosis. 10% survive 10+ years. My aunt got diagnosed with Parkinson's at 40yo after having some symptoms for a few years, and she died this fall at 70-something (average life expectancy for that is 7-14 years according to Wikipedia). Not that either of those things is good. Of course, still hoping it's something less bad and more treatable. Quote Link to comment Share on other sites More sharing options...
SproutMamaK Posted December 19, 2016 Share Posted December 19, 2016 :grouphug: I wish I could give you some encouragement, but nothing I can say will take this weight off your shoulders. I just want you to know that I'm praying for you and that we're here to listen, no matter what happens. 1 Quote Link to comment Share on other sites More sharing options...
StaceyinLA Posted December 19, 2016 Share Posted December 19, 2016 Praying that you'll get some answers soon, and that it isn't anything serious. Quote Link to comment Share on other sites More sharing options...
Nan in Mass Posted December 19, 2016 Share Posted December 19, 2016 Hugs. Holding you and your family in the light. Quote Link to comment Share on other sites More sharing options...
Miss Tick Posted December 19, 2016 Share Posted December 19, 2016 Thinking of you, BlsdMama! Quote Link to comment Share on other sites More sharing options...
Zinnia Posted December 19, 2016 Share Posted December 19, 2016 I am praying for you! Quote Link to comment Share on other sites More sharing options...
Chris in VA Posted December 19, 2016 Share Posted December 19, 2016 Jesus is close to the brokenhearted. He won't leave. Lean in. Know there are many holding you before the throne. It's ok to be scared. <3 7 Quote Link to comment Share on other sites More sharing options...
RioSamba Posted December 19, 2016 Share Posted December 19, 2016 I just prayed for your peace, and for answers. Quote Link to comment Share on other sites More sharing options...
Sugarfoot Posted December 19, 2016 Share Posted December 19, 2016 The unknown is just so stressful. Praying for you and wishing you peace. May all of this be resolved soon. Quote Link to comment Share on other sites More sharing options...
RootAnn Posted December 19, 2016 Share Posted December 19, 2016 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
PrincessMommy Posted December 19, 2016 Share Posted December 19, 2016 praying you find answers soon and whatever it is is very treatable. Hugs... I'd be scared too. Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted December 19, 2016 Share Posted December 19, 2016 :grouphug: Quote Link to comment Share on other sites More sharing options...
Mergath Posted December 19, 2016 Share Posted December 19, 2016 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Peaceful Isle Posted December 19, 2016 Share Posted December 19, 2016 My friend was diagnosed with ALS about two years ago. Her symptoms were very different than yours. One day, she couldn't get up from the floor. Her legs would not work. She is only 30. Makes me doubt you would have it. Your limping , dragging leg and spasticity sounds more like MS. My husband was diagnosed with MS about 7 years ago and it sounds more like that, but I'm not an expert. Could it maybe be that? Did your MRI do contrast dye ? He is actually doing extremely well right now. Anyways, prayers for you and your sweet babies. Praying so deeply for you right now. The journey of unknown illness is stressful , but God is with you. 💕 1 Quote Link to comment Share on other sites More sharing options...
pinkmint Posted December 19, 2016 Share Posted December 19, 2016 Praying that it is not in fact ALS and for peace of heart and mind. (((hugs))) 1 Quote Link to comment Share on other sites More sharing options...
East Coast Sue Posted December 19, 2016 Share Posted December 19, 2016 Praying for you. I can't tell you not to be scared because I know that I would be afraid too. I do hope you find answers and healing soon. I've always enjoyed your posts and imagine you're one of the kindest people here so I hope you'll let us know how you're doing so we can be in prayer and share your burden. 2 Quote Link to comment Share on other sites More sharing options...
goldberry Posted December 19, 2016 Share Posted December 19, 2016 :grouphug: Quote Link to comment Share on other sites More sharing options...
Alicia64 Posted December 19, 2016 Share Posted December 19, 2016 I agree with Happypamama. Without going into detail, I super-duper recommend not self diagnosing. Look at it as a blessing that you are close to U of Iowa. ((((We're with you.)))) Alley 3 Quote Link to comment Share on other sites More sharing options...
StephanieZ Posted December 19, 2016 Share Posted December 19, 2016 :( :( :( I'm so sorry. Honestly, if I were you, I'd be really scared, too. I'm glad you are going to see a high level specialist/facility. I very much hope you get good news and find a treatable cause for your symptoms. When is your appointment? Do not hesitate to advocate for yourself, or to have a friend or family member advocate for you. Some people are more comfortable with a slow diagnostic process, as they can put the worries out of their mind and ease into a diagnosis. Others (self included) are so anxious during that process that they would prefer to expedite the process and hurry over to the top notch specialist with every test available immediately . . . in order to get to an answer ASAP, even if that answer is not one you'd want to hear. Wherever YOU fall on this spectrum, try to advocate for yourself so you can get the care you need at the pace YOU prefer. (((((hugs))))) and best wishes for good news ASAP. 1 Quote Link to comment Share on other sites More sharing options...
sbgrace Posted December 19, 2016 Share Posted December 19, 2016 (edited) :grouphug: I'm sorry you have all this fear, these symptoms, and no answers. I had an ALS scare when my kids were young, and I can imagine some of how you feel. Not being able to sleep, from the twitching or the fear either one, made me twitch even more. In the back of my mind, I think neurology said twitching on both sides of the body is reassuring. I remember a nurse telling me there were some new treatments for ALS, if the worst turned out to be true. This was years ago, and I wasn't having a lot of what you're experiencing (I had constant twitching, strange sensations, vertigo, fatigue primarily--EMG's and MRI's were normal, I don't remember other stuff in neuro exams). I don't mean to minimize. I know you are terrified. I would be too. I feel for you. I am praying for you. Edited December 19, 2016 by sbgrace Quote Link to comment Share on other sites More sharing options...
poppy Posted December 19, 2016 Share Posted December 19, 2016 Nothing but good wishes for you here. I had an MS scare that turned out to be something very treatable. But, I remember the dread........ hope your story turns out as well as mine did. 1 Quote Link to comment Share on other sites More sharing options...
TranquilMind 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. Praying that this is just a scare that amounts to nothing (in Jesus' name...as I am a Christian, so I hope that's ok). Praying for healing for you. 4 Quote Link to comment Share on other sites More sharing options...
Bluegoat Posted December 19, 2016 Share Posted December 19, 2016 Prayers. I hope you get some answers soon. Quote Link to comment Share on other sites More sharing options...
BlsdMama Posted December 19, 2016 Author Share Posted December 19, 2016 Did you ever have your B12, iron, folate, and D levels tested? You know, DH & I were just talking about this morning - the neuro here never did. Just ended up doing the referral out. I'm certain they will do all of that there and, in a little attempt to feel like I'm being proactive I went and got B Complex with 12, D3, and magnesium this morning. If nothing else it made me feel like I was doing something, kwim? :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. The Iowa appt. is surprisingly quick - January 6th. I was pleased to get in there relatively fast. Getting in some departments can take months, so a few weeks is good. Did they do the lower back MRI yet? They did and I *really* thought they would find something there. Nope, was told it looks good, which was, well, not good. 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. Yeah, a label, a name, something would be better than nothing I think? I would be scared too. And here is what I will tell you. Naming the cause won't make it worse. It is the only way you can find out what to do ... if anything. I'm telling you this as the first person to stick my head in the sand. I'm not very brace, even when I know that knowing is power. (((you))) :001_wub: :grouphug: IF you have that, maybe being young gives you a better prognosis. 10% survive 10+ years. My aunt got diagnosed with Parkinson's at 40yo after having some symptoms for a few years, and she died this fall at 70-something (average life expectancy for that is 7-14 years according to Wikipedia). Not that either of those things is good. Of course, still hoping it's something less bad and more treatable. You and me both! ;) My friend was diagnosed with ALS about two years ago. Her symptoms were very different than yours. One day, she couldn't get up from the floor. Her legs would not work. She is only 30. Makes me doubt you would have it. Your limping , dragging leg and spasticity sounds more like MS. My husband was diagnosed with MS about 7 years ago and it sounds more like that, but I'm not an expert. Could it maybe be that? Did your MRI do contrast dye ? He is actually doing extremely well right now. Anyways, prayers for you and your sweet babies. Praying so deeply for you right now. The journey of unknown illness is stressful , but God is with you. 💕 My neuro really thought MS. We did MRIs of the head, neck, upper back first - with and without contrast. She said there was some white spots but not lesions, just what is expected with aging. I'd really love it not to be that. Clonus, hyperreflexia, foot drop, and fasiculations tend to cry peripheral nervous system. But PLS is on the table too and, while rare, doesn't kill you. Not only that but there are hundreds of weird little diseases out there.... Maybe it's one that Google doesn't readily find. :P I'm sorry all. I had a bit of a mental crisis last night. I was sitting here on the computer when my left leg (the good one) started twitching. That was brand new and it *really* freaked me out. We had been essentially just calling the problem my leg, as in my right leg is my bad leg. And I think last night was that straw that broke the camel's back. It started and I just started sobbing. I'm feeling much better today mentally and just gathering myself back together. 16 Quote Link to comment Share on other sites More sharing options...
Sharpie Posted December 19, 2016 Share Posted December 19, 2016 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
mommytobees Posted December 19, 2016 Share Posted December 19, 2016 {{{{{hugs}}}}}}} I don't blame you one bit for being scared. I would be too. {{{hugs}}} Kris Quote Link to comment Share on other sites More sharing options...
mommytobees Posted December 19, 2016 Share Posted December 19, 2016 You know, DH & I were just talking about this morning - the neuro here never did. Just ended up doing the referral out. I'm certain they will do all of that there and, in a little attempt to feel like I'm being proactive I went and got B Complex with 12, D3, and magnesium this morning. If nothing else it made me feel like I was doing something, kwim? The Iowa appt. is surprisingly quick - January 6th. I was pleased to get in there relatively fast. Getting in some departments can take months, so a few weeks is good. They did and I *really* thought they would find something there. Nope, was told it looks good, which was, well, not good. Yeah, a label, a name, something would be better than nothing I think? :001_wub: You and me both! ;) My neuro really thought MS. We did MRIs of the head, neck, upper back first - with and without contrast. She said there was some white spots but not lesions, just what is expected with aging. I'd really love it not to be that. Clonus, hyperreflexia, foot drop, and fasiculations tend to cry peripheral nervous system. But PLS is on the table too and, while rare, doesn't kill you. Not only that but there are hundreds of weird little diseases out there.... Maybe it's one that Google doesn't readily find. :p I'm sorry all. I had a bit of a mental crisis last night. I was sitting here on the computer when my left leg (the good one) started twitching. That was brand new and it *really* freaked me out. We had been essentially just calling the problem my leg, as in my right leg is my bad leg. And I think last night was that straw that broke the camel's back. It started and I just started sobbing. I'm feeling much better today mentally and just gathering myself back together. WAIT!! What?!?!? Who made that evaluation? I ask this because there are MS lesions that can look funny and given your symptoms.... I would keep jumping to MS. Do you have access to your CD's? ARGH! Jan 6 can't come soon enough. Have your records already made it there? Make sure you have your images in hand (NOT the reports!). Kris SaveSave 3 Quote Link to comment Share on other sites More sharing options...
Peaceful Isle Posted December 19, 2016 Share Posted December 19, 2016 WAIT!! What?!?!? Who made that evaluation? I ask this because there are MS lesions that can look funny and given your symptoms.... I would keep jumping to MS. Do you have access to your CD's? ARGH! Jan 6 can't come soon enough. Have your records already made it there? Make sure you have your images in hand (NOT the reports!). Kris Save Save I agree! White spots on the brain are not normal. My dh took a while for his diagnosis. He also got a spinal tap to check for "certain strands " in the fluid, I think it is what they called it. 1 Quote Link to comment Share on other sites More sharing options...
luuknam Posted December 19, 2016 Share Posted December 19, 2016 I agree! White spots on the brain are not normal. She didn't say they were on the brain. Quote Link to comment Share on other sites More sharing options...
jjeepa Posted December 19, 2016 Share Posted December 19, 2016 :grouphug: So sorry! Praying for peace and healing. Quote Link to comment Share on other sites More sharing options...
mommytobees Posted December 20, 2016 Share Posted December 20, 2016 I agree! White spots on the brain are not normal. My dh took a while for his diagnosis. He also got a spinal tap to check for "certain strands " in the fluid, I think it is what they called it. They would be looking for oligoclonal bands (o-bands). It's the pieces of myelin. There is a small window of opportunity to actually locate the bands in the CSF. Kris 1 Quote Link to comment Share on other sites More sharing options...
mommytobees Posted December 20, 2016 Share Posted December 20, 2016 She didn't say they were on the brain. Where else would they be if they were on the MRI of the brain? Quote Link to comment Share on other sites More sharing options...
luuknam Posted December 20, 2016 Share Posted December 20, 2016 Where else would they be if they were on the MRI of the brain? She didn't say they were on the MRI of the brain: We did MRIs of the head, neck, upper back first - with and without contrast. She said there was some white spots but not lesions, just what is expected with aging. So, possibly spine, possibly peripheral nervous system, who knows? Quote Link to comment Share on other sites More sharing options...
mommytobees Posted December 20, 2016 Share Posted December 20, 2016 I FOUND IT!!! I knew I had read a journal article.... https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3079372/ This is NOT light reading. My foci: "Cortical lesions are poorly detectable on routine MRI sequences such as T2-weighted (T2-W) spin echo and fluid-attenuated inversion recovery (FLAIR) due to potential several reasons: 1) smaller lesions size; 2) smaller difference in T1 and T2 relaxation times between lesions and surrounding tissue in GM than in WM; 3) low inflammatory infiltration of cortical lesions and the less frequent association with blood brain barrier (BBB) breakdown; 4) partial volume effect resulting from the CSF of adjacent cortical sulci. It has been shown that an improvement in cortical lesion detection in MS can be achieved by using a double inversion recovery (DIR) (18) sequence. DIR imaging consists of two adiabatic non-selective inversion pulses applied before a Turbo Spin Echo sequence, in order to suppress the signal from two tissues with different longitudinal relaxation times simultaneously. In the brain, DIR is used to selectively image the GM by nulling the signal from WM and cerebrospinal fluid (19) (Fig. 1). DIR imaging increases cortical lesion detection rates per patient by an average of 152% when compared with FLAIR imaging and 500% when compared with conventional T2-W MRI, (20)." and "histological study has demonstrated that both patients with SP-MS and PP-MS are characterized by extensive demyelination of the cortex and more diffuse rather than focal injury in normal-appearing white matter (NAWM)" {{{{hugs}}}}} You need treatment. The worst of all of this is the fact that you are suffering and they are DOING NOTHING. I understand (better than most) that they can't treat without knowing what it is... that's why you got into Iowa so fast, Jan 6 is FAST. However, ARGH!!!!!! You have to live with this. My daughter is now at 9 1/2 weeks with no treatment. SOB. Heartbreak. She's losing the ability to read. It's killing me. I really understand how you are feeling. {{{hugs}}} Jan 6 will not come fast enough for me just in my worry for you. Kris 1 Quote Link to comment Share on other sites More sharing options...
DawnM Posted December 20, 2016 Share Posted December 20, 2016 Hope they can figure it out soon! Quote Link to comment Share on other sites More sharing options...
creekland Posted December 20, 2016 Share Posted December 20, 2016 I'm glad you are feeling better now heading into this. My prayers are with you as they continue to tackle finding the problem - then fixing it. :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Luckymama Posted December 20, 2016 Share Posted December 20, 2016 Oh Kris, I could not let that post pass me by. So much love and peace and hope to you and your daughter :grouphug: And Blsdmama :grouphug: :grouphug: :grouphug: 6 Quote Link to comment Share on other sites More sharing options...
mom2samlibby Posted December 20, 2016 Share Posted December 20, 2016 You know, DH & I were just talking about this morning - the neuro here never did. Just ended up doing the referral out. I'm certain they will do all of that there and, in a little attempt to feel like I'm being proactive I went and got B Complex with 12, D3, and magnesium this morning. If nothing else it made me feel like I was doing something, kwim? Supplementing can throw you results off. If you are planning on having them tested on the 6th, I'd hold off from taking them. 10 Quote Link to comment Share on other sites More sharing options...
J-rap Posted December 20, 2016 Share Posted December 20, 2016 I'm glad they were able to get you in so quickly. I'll be with my dd at Mayo that same day, digging into her own health concerns, so I'll be thinking of you then. 3 Quote Link to comment Share on other sites More sharing options...
BlsdMama Posted December 20, 2016 Author Share Posted December 20, 2016 WAIT!! What?!?!? Who made that evaluation? I ask this because there are MS lesions that can look funny and given your symptoms.... I would keep jumping to MS. Do you have access to your CD's? ARGH! Jan 6 can't come soon enough. Have your records already made it there? Make sure you have your images in hand (NOT the reports!). Kris SaveSave I don't have access Kris, but this seems so much more likely - the MS rather than other things. I think I'll just grab hold of this one instead until I know more. I know MS can be really bad for some folks and I'm so sorry for those who suffer from it - I don't mean to minimize at all. All the tests have already been sent to the university so I would assume that's good enough or no? 1 Quote Link to comment Share on other sites More sharing options...
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