Faithful_Steward Posted March 20, 2017 Share Posted March 20, 2017 Bump Praying for you today, ((hugs)) 1 Quote Link to comment Share on other sites More sharing options...
creekland Posted March 20, 2017 Share Posted March 20, 2017 Bump Praying for you today, ((hugs)) Ditto Quote Link to comment Share on other sites More sharing options...
mumto2 Posted March 20, 2017 Share Posted March 20, 2017 Praying...... Quote Link to comment Share on other sites More sharing options...
East Coast Sue Posted March 20, 2017 Share Posted March 20, 2017 Praying! Sent from my iPhone using Tapatalk Quote Link to comment Share on other sites More sharing options...
Heatherwith4 Posted March 20, 2017 Share Posted March 20, 2017 Thinking of you today. Quote Link to comment Share on other sites More sharing options...
MedicMom Posted March 20, 2017 Share Posted March 20, 2017 (edited) Thinking of you today as well and hoping for all the best. I am certainly not an expert on ALS but as a paramedic I have cared for patients with it, since in the advanced stages they can only leave the house by stretcher. I don't mean to downplay the horribleness of it, but wasting away like cancer or dementia is not necessarily the end result. You're welcome to PM me and I can share details I won't necessarily put on an Internet forum. Edited March 20, 2017 by MedicMom 3 Quote Link to comment Share on other sites More sharing options...
Selkie Posted March 20, 2017 Share Posted March 20, 2017 I'm also thinking of you. :grouphug: Quote Link to comment Share on other sites More sharing options...
EKS Posted March 20, 2017 Share Posted March 20, 2017 :grouphug: Quote Link to comment Share on other sites More sharing options...
NorthwestMom Posted March 20, 2017 Share Posted March 20, 2017 Thinking of you. :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted March 20, 2017 Share Posted March 20, 2017 ALS is not like dementia. Steven Hawkins has had ALS for decades. He had it when I was in college in the early 80s. My mom was diagnosed with ALS when I was in my senior year. We got married before my dh's senior year because I wanted to have my mother at my wedding. ( My dad had died when I was 13). My mom was very weak at the end but she still enjoyed being with her kids, having her cat by her, and for when I took her out to visit a pretty garden very close to her death. She died from pneumonia as a result of the ALS. Steven Hawkins is still alive and working all these years later. I would want you to seriously reconsider things like feeding tube and other necessities that may occur if you have ALS. It isn't the same at all like wasting away from dementia and as MedicMom has said, she has met people who are surviving for many years. I think the greatest gift I have given my kids is my chronic diseases and infirmities. It has helped them cope with issues as adults and has made them into very compassionate people who are always ready to help others. It made them more independent. It gave them more self-confidence. I really hope this is Lyme disease and do not see any reason why someone wouldn't prescribe you the doxycycline even as a lark. So definitely pursue that but also start planning for your family if the disease does not go away be it ALS, Lyme disease that isn't amenable to treatment, or some other motor neuron disease. 7 Quote Link to comment Share on other sites More sharing options...
Anne in CA Posted March 20, 2017 Share Posted March 20, 2017 Praying in CA! Quote Link to comment Share on other sites More sharing options...
Suzanne115 Posted March 20, 2017 Share Posted March 20, 2017 So sorry for what you are going through. Praying for you! Suzanne Quote Link to comment Share on other sites More sharing options...
Insertcreativenamehere Posted March 20, 2017 Share Posted March 20, 2017 Thinking and praying for you today. Quote Link to comment Share on other sites More sharing options...
mommyoffive Posted March 20, 2017 Share Posted March 20, 2017 Sending every prayer I have. Quote Link to comment Share on other sites More sharing options...
Caclcoca Posted March 20, 2017 Share Posted March 20, 2017 Thinking about you and your family today. Quote Link to comment Share on other sites More sharing options...
J-rap Posted March 20, 2017 Share Posted March 20, 2017 Thinking about you today and keeping you in my prayers! Quote Link to comment Share on other sites More sharing options...
edelweiss Posted March 20, 2017 Share Posted March 20, 2017 Many prayers for you today. Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted March 20, 2017 Share Posted March 20, 2017 I think that one of the best things about Well trained mind forum is how supportive we are all about others. Yes, we are all pulling for you and so many of us are praying for you. I hope that gives you some small bit of concolation. I know when my one child was having serious medical problems, i really did feel better knowing how many here were pulling for her to get better. 8 Quote Link to comment Share on other sites More sharing options...
NorthwestMom Posted March 20, 2017 Share Posted March 20, 2017 Checking in. :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
East Coast Sue Posted March 21, 2017 Share Posted March 21, 2017 Hugs and prayers... Sent from my iPhone using Tapatalk Quote Link to comment Share on other sites More sharing options...
MistyMountain Posted March 21, 2017 Share Posted March 21, 2017 I have been thinking about you. Quote Link to comment Share on other sites More sharing options...
Ausmumof3 Posted March 21, 2017 Share Posted March 21, 2017 Thinking of you Quote Link to comment Share on other sites More sharing options...
creekland Posted March 21, 2017 Share Posted March 21, 2017 Sending you some love tonight - and tons of internet (but just as real) :grouphug: . Take care. Quote Link to comment Share on other sites More sharing options...
Guest Posted March 21, 2017 Share Posted March 21, 2017 Still thinking about you and praying here, too. Love to you and your family from mine! Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted March 21, 2017 Share Posted March 21, 2017 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Catwoman Posted March 21, 2017 Share Posted March 21, 2017 Praying for you every day! :grouphug: Quote Link to comment Share on other sites More sharing options...
Eagle Posted March 21, 2017 Share Posted March 21, 2017 Thinking of you. :grouphug: Quote Link to comment Share on other sites More sharing options...
mominco Posted March 21, 2017 Share Posted March 21, 2017 Thoughts and Prayers! Quote Link to comment Share on other sites More sharing options...
OneStepAtATime Posted March 21, 2017 Share Posted March 21, 2017 As with so many others, sending you hugs and prayers and positive thoughts tonight. Quote Link to comment Share on other sites More sharing options...
Lawana Posted March 21, 2017 Share Posted March 21, 2017 Also sending big hugs and comforting energy. Quote Link to comment Share on other sites More sharing options...
RootAnn Posted March 21, 2017 Share Posted March 21, 2017 My whole family has been praying for you & your family. Quote Link to comment Share on other sites More sharing options...
LMV Posted March 21, 2017 Share Posted March 21, 2017 Prayers... Quote Link to comment Share on other sites More sharing options...
East Coast Sue Posted March 21, 2017 Share Posted March 21, 2017 You're on my heart today. Praying for you and your family. (((Hugs))) Sent from my iPhone using Tapatalk Quote Link to comment Share on other sites More sharing options...
jjeepa Posted March 21, 2017 Share Posted March 21, 2017 Praying :grouphug: Quote Link to comment Share on other sites More sharing options...
Innisfree Posted March 21, 2017 Share Posted March 21, 2017 Thinking of you. Quote Link to comment Share on other sites More sharing options...
That70'sLisa Posted March 21, 2017 Share Posted March 21, 2017 :grouphug: :grouphug: :grouphug: and many, many prayers for you. Also praying for your DH and your sweet children. Quote Link to comment Share on other sites More sharing options...
Jaybee Posted March 21, 2017 Share Posted March 21, 2017 Thinking of you, and praying for you and your family. :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Kimberly in IN Posted March 21, 2017 Share Posted March 21, 2017 You and your family are in my thoughts and prayers. Quote Link to comment Share on other sites More sharing options...
Upptacka Posted March 22, 2017 Share Posted March 22, 2017 Praying for you...... Quote Link to comment Share on other sites More sharing options...
OneStepAtATime Posted March 22, 2017 Share Posted March 22, 2017 :grouphug: :grouphug: :grouphug: Hoping and praying and sending positive thoughts to you and your family... Quote Link to comment Share on other sites More sharing options...
creekland Posted March 22, 2017 Share Posted March 22, 2017 Sending more prayers for today. :grouphug: too. Quote Link to comment Share on other sites More sharing options...
East Coast Sue Posted March 22, 2017 Share Posted March 22, 2017 Praying for you each day. Sent from my iPhone using Tapatalk Quote Link to comment Share on other sites More sharing options...
Popular Post BlsdMama Posted March 23, 2017 Author Popular Post Share Posted March 23, 2017 How do I count the ways? Oh, yeah, the neurology appointment with new neuro doc. Turns out I am in absolutely perfect health except for my right side. Apparently I have a beautiful brain, a lovely spine, and I'm in great shape. All of which was horrible news unfortunately. Very brisk reflexes on the right side, Babinski positive, clonus present, muscle in right calf diminished. (Atrophied.) All in all, a new EMG is scheduled for next Monday morning and ALS is now on the short list of possibilities and pretty much now the most likely. Sigh. I am going to be brutally honest, this sucks. My fortieth birthday was in January. My baby is two. Two! My first grand baby will be here in April. And somehow we are going to have to sort through what comes next. Our homeschool program (very, very large) has lost two moms in two years. I would have preferred not to be next. On the upside, because, it turns out I am shockingly skilled at dark sarcasm, I could get a really cool joystick to drive my van for a while. Feeling pretty horrible for my poor husband right now. He really had refused to entertain the thought of ALS. The update: I think my neuro is a lovely man. He might be a little pessimistic. I had a CLEAN EMG on Monday. Clean. 100% Normal. So he tells me this fiasco could be early ALS but there is NO motor neuron damage (denervation) or compensation (reinervation) found. Which, IMO and Dr. Google's, makes that little assumption very unlikely. My doctor says he has seen it happen before but it's rare, maybe PLS. Frankly, I am thinking Lyme. Lyme has been misdiagnosed as ALS before and my thoughts are if I look like a jackass and I'm totally wrong and it *is* ALS, so what? And seriously - if I had ALS I would be the 1 in 165 million to get it before forty. Then I have a slow moving form? Even more rare? AND I have two clean EMGs? That would make those stats so off the chart rare. I refuse to drink the kool-aid. Or at least not until it's being poured down my throat. So the update? 1. I have a clean EMG. 2. I (currently) do NOT have a diagnosis. :) 3. I have an appointment with a Lyme doc in Wisconsin in early April. Yes, yes, I do. (dance) All I want for Christmas is Ceftriaxone and it is looking like an April Christmas. 114 Quote Link to comment Share on other sites More sharing options...
East Coast Sue Posted March 23, 2017 Share Posted March 23, 2017 Rejoicing that for now there is no diagnosis- praying that comes in April with the Lyme Dr. Sent from my iPhone using Tapatalk Quote Link to comment Share on other sites More sharing options...
BlsdMama Posted March 23, 2017 Author Share Posted March 23, 2017 ALS is not like dementia. Steven Hawkins has had ALS for decades. He had it when I was in college in the early 80s. My mom was diagnosed with ALS when I was in my senior year. We got married before my dh's senior year because I wanted to have my mother at my wedding. ( My dad had died when I was 13). My mom was very weak at the end but she still enjoyed being with her kids, having her cat by her, and for when I took her out to visit a pretty garden very close to her death. She died from pneumonia as a result of the ALS. Steven Hawkins is still alive and working all these years later. I would want you to seriously reconsider things like feeding tube and other necessities that may occur if you have ALS. It isn't the same at all like wasting away from dementia and as MedicMom has said, she has met people who are surviving for many years. I think the greatest gift I have given my kids is my chronic diseases and infirmities. It has helped them cope with issues as adults and has made them into very compassionate people who are always ready to help others. It made them more independent. It gave them more self-confidence. I really hope this is Lyme disease and do not see any reason why someone wouldn't prescribe you the doxycycline even as a lark. So definitely pursue that but also start planning for your family if the disease does not go away be it ALS, Lyme disease that isn't amenable to treatment, or some other motor neuron disease. So, on this. Steven Hawkins was actually brought up by my neuro on Monday. He says he doesn't have a single colleague who buys it. PLS maybe but not ALS. That wasn't encouraging exactly, but it was an interesting sidenote. I think my doctor kind of says whatever is on his mind at that time. #nofilter I like him. He's funny, he's warm. But I do wonder if sometimes if what comes out of his mouth is wondering aloud or what he is really considering.... do you kwim? I want Ceftriaxone or Rocephin and I want a lot of it. A lot of doctors won't put themselves on the line because it isn't just a 30, 60, 90 days of doxy. The fact is that a lot of people (including doctors and some quacks) think that chronic Lyme patients need long term and high doses of antibiotics and some patients have died from the treatment. They put their livelihood on the line too. I get it. I do. If I worked for years to achieve my MD and it was my livelihood, would I put it all on the line for a random stranger? My guess is that most Lyme docs risk it because they have personally been affected and personally seen it work, kwim? 6 Quote Link to comment Share on other sites More sharing options...
Valley Girl Posted March 23, 2017 Share Posted March 23, 2017 So glad you got an appointment with the Lyme doc. So sorry for the uncertainty and ongoing hell you're dealing with. 1 Quote Link to comment Share on other sites More sharing options...
Guest Posted March 23, 2017 Share Posted March 23, 2017 Thanks for the update. Been thinking and praying for you. Quote Link to comment Share on other sites More sharing options...
mumto2 Posted March 23, 2017 Share Posted March 23, 2017 I am so happy to read your post!!!!! I can't figure out why they won't just give you the antibiotics and see if they work. Quote Link to comment Share on other sites More sharing options...
Selkie Posted March 23, 2017 Share Posted March 23, 2017 I am thrilled for you that your EMG was normal! Such happy news! 1 Quote Link to comment Share on other sites More sharing options...
Ali in OR Posted March 23, 2017 Share Posted March 23, 2017 We'll take the good news and pray for some answers that lead to HEALING! 5 Quote Link to comment Share on other sites More sharing options...
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