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Today sucked. - Update #201


BlsdMama
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Kelly... :grouphug:  :grouphug:  :grouphug:

 

I am sure you have already seen/read this abstract, but just in case.  Your symptoms and patient presentation appear similar.

 

You desperately need to see a highly qualified Lyme Literate MD.  (LLMD)

 

Lyme disease -induced polyradiculopathy mimicking amyotrophic lateral sclerosis.

 

https://www.ncbi.nlm.nih.gov/pubmed/24397499

 

All the patient required was doxy.

 

Never give up!   :grouphug:  :grouphug:  :grouphug:

 

 
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I'm so sorry! I hope that it is Lyme disease or something that is easier to deal with. My aunt and grandfather passed away from ALS and I know more than I want about what it's like. I know the ice bucket challenge has been very positive for ALS research so maybe there is a new treatment or a clinical trial that you could be involved in.

 

 

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I'm so sorry, and still hope and pray this will turn out to be something else. In honor of my neighbor Anna who walked this road (and then wheelchaired this road), let me wish you peace, grace, strength, and love to live a beautiful life. This sucks for everyone, but with a wonderful dad and loving family support, your kids will be okay.

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I agree. Helpful post - thank you.  We have been talking about this.  Just had an eval with one dd that didn't go well. I put faith in the U of Iowa to recognized remediated dyslexia.  Stupid.  Should have gone to a dyslexia expert.  But, they did give her a diagnosis of a written expression disability - you know grammar, spelling.  SMH.  That was $$ wasted.  

 

 

You know, I'd much rather not waste time on the emotional black hole and start planning.  I think I probably have less because of how fast this is moving.  I only got drop foot at the beginning of fall / end of summer.  We thought it was a knee problem.  I had a car accident years ago and thought it was coming back to haunt me in nerve damage.  

 

So, this winter.  Once the twitching started it started only in one leg.  But then the other, now the arm.  My abdomen twitches and now my lip has twitched twice.  Once the tongue begins that isn't good. But the biggest sign of problems is probably my rib pain.  Interstitial muscle failure signals respiratory involvement from everything I've read.  The neuro doesn't want to talk about my rib pain until we know what we are dealing with.  I understand what he's saying, but I also know that it signals poor things unfortunately.  Remember that the 3-5 plan is generally for people who are willing to be fully intubated and have feeding tubes until they are so emaciated that their body can no longer support them.  I am willing to use a bi-pap.  I am unwilling to be intubated. It will be a cold day in hell before I lengthen this torture out for my kids to watch.  My grandmother shrunk away to nothing and her kids wished mercy on her long before it came.  I would never, ever, ever put the 5-20 crowd through that.  Ever.

 

Yes, this is the time to call in the chits (paybacks, favors, credits) and find somebody who is really head on straight about their evals. It is a GIFT to your kids to get them evals, to get the NEXT person who helps them COMPLETE information. No one has in your head the complete picture like you do. You MUST start putting that down.

 

Say it's Lyme. You still need it all down. Even in best scenario, you need all this written down. And you need to do it now, before the diagnosis, if you can, for those letters of intent. Things may get really fast or overwhelming starting Monday, so this is your chance to slow down and reflect. It's a healthy way to kill the time.

 

Will your pastor or religious leader meet with you? Even if he just meets with you this week and prays, that would be something. Don't go into this silently, without them knowing. Some people are really private, and this is the time to open up and let someone help you.

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Kelly... :grouphug:  :grouphug:  :grouphug:

 

I am sure you have already seen/read this abstract, but just in case.  Your symptoms and patient presentation appear similar.

 

You desperately need to see a highly qualified Lyme Literate MD.  (LLMD)

 

Lyme disease -induced polyradiculopathy mimicking amyotrophic lateral sclerosis.

 

https://www.ncbi.nlm.nih.gov/pubmed/24397499

 

All the patient required was doxy.

 

Never give up!   :grouphug:  :grouphug:  :grouphug:

 

 

This, this, this.  Travel somewhere to find a doctor like this to squeeze you in.  Please!  

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I'm so sorry.  Praying for you.

 

Have you ever watched the documentary "Under our Skin"?  It is about lyme disease and really eye opening.  It use to be available on Netflix or YouTube.  I would check your library.

 

http://underourskin.com

 

You may be able to get in with an LLMD fairly quickly if they have cancellations.  If you would like the names of one in Minnesota and one in Missouri, please PM me.

 

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Mamas, never underestimate what you do.  Every day you spend homeschooling, loving, nurturing your children, it is the world to them.  You may feel taken for granted, but their lives would change if you weren't there doing what you do. <3

 

This post of yours made me cry as well. We'll be praying for you & your family, regardless of diagnosis. You've always inspired me & continue to do so.  :grouphug:

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I am sorry to hear of the possible diagnosis... praying for you. If you do find that it is ALS and want to speak with someone that has been close to ALS, feel free to PM me. We moved back to NC in 2012 to help my mom with the care-taking of my father, who passed away from ALS. It was a very difficult disease for not only him but our entire family. As hard as it was, there were also so many blessings in so many ways.

Hugs....

Edited by allySW
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I'm so sorry this is happening.

 

I'm glad you're still pursuing the Lyme disease trail as well. Someone on these boards had a son who had a non-Lyme tick disease and went to what sounded like an excellent tick disease center. I wish I could remember who, but hopefully she will pop in here.

 

:grouphug:  :grouphug:  :grouphug:

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I agree. Helpful post - thank you. We have been talking about this. Just had an eval with one dd that didn't go well. I put faith in the U of Iowa to recognized remediated dyslexia. Stupid. Should have gone to a dyslexia expert. But, they did give her a diagnosis of a written expression disability - you know grammar, spelling. SMH. That was $$ wasted.

 

 

 

You know, I'd much rather not waste time on the emotional black hole and start planning. I think I probably have less because of how fast this is moving. I only got drop foot at the beginning of fall / end of summer. We thought it was a knee problem. I had a car accident years ago and thought it was coming back to haunt me in nerve damage.

 

So, this winter. Once the twitching started it started only in one leg. But then the other, now the arm. My abdomen twitches and now my lip has twitched twice. Once the tongue begins that isn't good. But the biggest sign of problems is probably my rib pain. Interstitial muscle failure signals respiratory involvement from everything I've read. The neuro doesn't want to talk about my rib pain until we know what we are dealing with. I understand what he's saying, but I also know that it signals poor things unfortunately. Remember that the 3-5 plan is generally for people who are willing to be fully intubated and have feeding tubes until they are so emaciated that their body can no longer support them. I am willing to use a bi-pap. I am unwilling to be intubated. It will be a cold day in hell before I lengthen this torture out for my kids to watch. My grandmother shrunk away to nothing and her kids wished mercy on her long before it came. I would never, ever, ever put the 5-20 crowd through that. Ever.

ALS is a horrible disease. However, I have taken care of many of patients in the advanced stages. None have been emaciated; they are receiving excellent nutrition through the feeding tube. They aren't intubated; they have trachs placed and use portable ventilators. I've had many patients who are able to communicate with their families through eye movements that are read by a computer and turned into text. This doesn't reduce the horribleness of the disease, but I've worked with many people who are living 5-10 years past diagnosis, at home with their families. I had one patient who was at 15 years past diagnosis, still comfortable at home and able to communicate with adapative equipment. Edited by MedicMom
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:grouphug: So sorry you are faced with this. I've always enjoyed your posts and have seen how important your kids are to you. Your love and concern for your kids in the face of a devastating diagnosis is very moving. I've often thought I hope I don't pass while my kids are still at home because even though I'm far from perfect as a person and a mom, I'm *their* mom. I hope and pray that it isn't the worst and it's treatable Lyme instead.

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ALS is a horrible disease. However, I have taken care of many of patients in the advanced stages. None have been emaciated; they are receiving excellent nutrition through the feeding tube. They aren't intubated; they have trachs placed and use portable ventilators. I've had many patients who are able to communicate with their families through eye movements that are read by a computer and turned into text. This doesn't reduce the horribleness of the disease, but I've worked with many people who are living 5-10 years past diagnosis, at home with their families. I had one patient who was at 15 years past diagnosis, still comfortable at home and able to communicate with adapative equipment.

 

Wow, this is amazing. And it really pushes the envelope on how you decide your care and what you want to receive. That would take some serious counseling and unity on how to approach it. Wow.

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Wow, this is amazing. And it really pushes the envelope on how you decide your care and what you want to receive. That would take some serious counseling and unity on how to approach it. Wow.

I don't want to downplay the horribleness of ALS at all. It is truly terrible and devastating. However, there are medical advances that make interaction and life possible. Check out Amanda's Angels on Facebook(https://m.facebook.com/AmandasAngelsALS/). She is passed now, but was able to write and communicate throughout her ALS journey, even up to the very end.

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I'm really, really hoping that it is not ALS -- but if it is, I want to echo MedicMom in saying that interventions like trachs and feeding tubes don't have to be scary or something to be avoided at all costs. My 4 yo son had a trach for 3 years and still has a feeding tube. Now his issues are vastly different, but our experience with him has shown that these things can definitely be compatible with a good quality of life. He gets amazing nutrition (much better than everyone else in the family!) through his feeding tube -- the food we give through his feeding tube (Nourish) is a pediatric version of something called Liquid Hope. It's all-organic, whole-foods and is used by many people with ALS, including Steve Gleason (former NFL football player.) From what I understand, nutrition can be an important strategy in slowing down the process and extending quality of life. Our insurance pays for it, 100%. 

 

Regardless, I'm thinking and praying for you and praying for a Lyme diagnosis. 

Edited by insertcreativenamehere
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I'm ashamed of my petty problems today.

 

Blsdmama, you're in my thoughts and prayers. Hugs to you and your family. May this illness please turn out to be something else.

 

 

I <3 petty problems. Not shame on you at all. ((Hugs))

 

On an amusing note, we are in the middle of a remodel. (Kind of expected the dr. appt. on Monday to say different things *obviously.*) I left spray paint on the counter apparently, or someone did. I was moving a little slow this AM and he beat me to the kitchen where he spraypainted the floor (being replaced) a cabinet (scrubbing furiously) and part of the oven (also scrubbing furiously.) Petty problems are also on the front of *my* mind too. ;)

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I'm really, really hoping that it is not ALS -- but if it is, I want to echo MedicMom in saying that interventions like trachs and feeding tubes don't have to be scary or something to be avoided at all costs. My 4 yo son had a trach for 3 years and still has a feeding tube. Now his issues are vastly different, but our experience with him has shown that these things can definitely be compatible with a good quality of life. He gets amazing nutrition (much better than everyone else in the family!) through his feeding tube -- the food we give through his feeding tube (Nourish) is a pediatric version of something called Liquid Hope. It's all-organic, whole-foods and is used by many people with ALS, including Steve Gleason (former NFL football player.) From what I understand, nutrition can be an important strategy in slowing down the process and extending quality of life. Our insurance pays for it, 100%. 

 

Regardless, I'm thinking and praying for you and praying for a Lyme diagnosis. 

 

 

ALS is a horrible disease. However, I have taken care of many of patients in the advanced stages. None have been emaciated; they are receiving excellent nutrition through the feeding tube. They aren't intubated; they have trachs placed and use portable ventilators. I've had many patients who are able to communicate with their families through eye movements that are read by a computer and turned into text. This doesn't reduce the horribleness of the disease, but I've worked with many people who are living 5-10 years past diagnosis, at home with their families. I had one patient who was at 15 years past diagnosis, still comfortable at home and able to communicate with adapative equipment.

 

 

If ya'all don't mind I'm going to send you a PM.  Unfortunately early on in my fears I googled images.  You can't unsee some things. I think it might do me well to talk to you. I will assume that if this next Monday goes south (and my leg is more apparently atrophied even this week so I don't expect it to go well) that they will refer me to Clinic.  I think that might be very soothing  for DH and I.  We are *still* pursuing this Lyme thing but. Ugh. All of it.

 

On an up note - spent yesterday with my cousin. We are two peas in a pod and I am not sure there are many people on this earth I love more than her.  It was total therapy.  Dear God I am grateful for her.  We laughed until we practically cried and then started over again. She bought stuff for the kids to make cookies.  It was the best thing I could have done. I love her so much.

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Do you have a living will? I'm sure your social worker at the hospital, etc. will say this, but it's good to have everyone know the plan and onboard with the plan. You have the right to choose not to have that level of care. The most important thing is that you get the care you want and that people, who will have feelings about it, know who makes those decisions, the legal line of authority.

 

I think if you choose that path of extended care, if you needed it, your kids would be fine. We lost our MIL recently, and honestly the PRECIPITOUSNESS of it was very hard. I was crying about it today. Although a long goodbye seems horrible, on the other hand, it lets people make their peace with things. 

 

Your paint story is so hilarious. You go girl. Happy memories. :)

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Blsdmama - I am still hoping that ALS isn't the diagnosis, but if it is, you may want to reach out to Steve Gleason. I'm not sure if you're familiar with him, but he is a former New Orleans Saint football player who was diagnosed in 2011 with ALS. His company, Team Gleason, has a mission to help people diagnosed with ALS and similar diseases. 

 

http://www.teamgleason.org/

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Oh, wow.  I will certainly be praying for you, and praying that it's "just" Lyme or something like that!

 

I also wanted to tell you about my father, who was only 8 years old when his father (his best buddy!) died a violent death.  This was back in the 1930's, and then his mother had to move to the city to get a job in order to support my father and his siblings after that.  She was unable to bring her children though, so was forced to leave them in the care of various friends and neighbors, for years, actually.  I'm sure my father must have gone through some very difficult times as a child during all of that.  But he always had friends and relatives and neighbors in his life who loved him and were there for him.  And, I have always known him to be one of the happiest, most optimistic people I have ever known.  He is an incredible man with a real zest for life!

 

I mention that because I know one of the things heaviest on your heart right now is thinking about what your children may go through.  But do know that even some difficult years during childhood doesn't mean their lives won't be happy and beautiful.

 

Also, if you end up going to Mayo at some point, I have a close family member who works there and is part of a very sweet church community there, if that's something that appeals to you.

 

:grouphug:  :grouphug:

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