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Today sucked. - Update #201

BlsdMama

By BlsdMama,
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BlsdMama
BlsdMama

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 ther

BlsdMama
BlsdMama

Pretty much just MNDs - Motor Neuron Diseases   It's asymmetrical which rules out a lot. It's painless which rules out more.  The brain and spine look great, rules out more.  Finally the muscle is a

BlsdMama
BlsdMama

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 t

umsami

umsami

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Praying for you, your husband, and your family.  :grouphug:

 

Praying that God guides you to the right specialists who can offer you the best care and treatment no matter what is wrong with you (and hoping and praying that it is something easily treatable--not ALS). 

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BlsdMama

BlsdMama

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Sending prayers and  :grouphug: .  Are there other options?

Pretty much just MNDs - Motor Neuron Diseases

 

It's asymmetrical which rules out a lot. It's painless which rules out more.  The brain and spine look great, rules out more.  Finally the muscle is atrophying.  Toss in there cell death and atrophy.  Nope, a pretty short list.  And, really the four are pretty similar.  Primary LS doesn't kill you but is, in other ways, like ALS.  The other two MNDs are even more rare - many believe they eventually result in ALS and so are a slow moving progression towards it. 

 

While he didn't want to talk about my interstitial pain being related yesterday, he and I both know that if this is ALS then it is related.  It shows respiratory involvement and that is a more pressing concern.  Dying this way will suck.  No nice way about that.

 

I still think this is Lyme.  We will take the diagnosis but we are pursuing Lyme outside of the medical community in Iowa.  Lyme can be diagnosed as ALS.  It's plain stupid that they don't give ALS patients two weeks of IV antibiotics.  What are they scared of?  They might kill them?  LOL.  Um, yeah.

 

 

I am so sorry, This is very upsetting. I pray they are wrong but a friend of mine had it and there is so much help available.

 

I don't want to be a bummer but I really am sorry.

 

 

That does suck, wow. Can you get hooked up with a counselor? It's time. If the answer is no ALS, then you just dump them when you're done. 

 

And get somebody good, not somebody inexperienced or local. Maybe the hospital or the doctor can refer you. Just go ahead and do it. Go with your dh BEFORE you think you need it. Sounds like you'd already benefit from it.

 

I think so - I think once the official diagnosis comes in then a lot will be open to us.  It's not a long wait. The EMG is on Monday and it should give us a pretty definitive picture now that everything else is ruled out.  Iowa has an ALS Clinic and my guess is they are more experienced than our local neuros, kwim?  Thank you for the recommendation, truly.

 

We are in a OK. My friend went to KC for a definitive test.

 

Where can you go for a definitive test?

I wish there was a definitive test - ALS is more of a let's rule out absolutely everything else.  Then, let's wait for your muscle to begin to atrophy.  Then, let's give you another EMG.  If we see muscle death in more than one area, ta da, we will know this is ALS.  We're at that last step.  The only issue I have is that Lyme can perfectly mimic ALS.  And there is no way to differentiate the two.  There isn't a test for ALS per se.  Just clinical observation, ruling out everything else, then watching your muscle groups die one at a time.  Blech.

 

 

You know what kills me?  (Not meant as a pun, though I've found this week that I have a gift for dark humor.) Dying this way wouldn't be so horrible if I didn't know the kids were going to have to watch this.  Can you fathom that?  My kids will have to watch this.  Dear God.  

 

My 50-60 year old aunts and uncles were raked over the coals watching their 80 year old mother melt away to a skeleton due to dementia.

 

Abigail is 10.  She is TEN.  She is my right hand.  This will SLAUGHTER this child.  Elizabeth is fifteen.  She is bright and bubbly and carefree.  This is going to change her personality. :(  Ana is getting married, having a baby. This should be the happiest year of her life and I am going to ruin it.  The baby's first year is going to be this horrible blur of sadness. And Ella? No one gets Ella.  She is so hyper that no one looks past her busy body and mind to see that her heart is absolutely solid gold.  Who will love them like their mama loves them???  My husband is AMAZING.  If anyone can do this, then he is the man to do it. But, even as Super Dad, seriously, this is just mama territory.  

 

Cate and William will never remember so it's best on them.  Olivia is so profoundly dyslexic that I wonder what the hell the school system will do to hurt her.  Rebecca (13) is my aspie (not dx'd but still...)  Thank God for our homeschool program.  That will allow her to stay homeschooled and blossom but I can't help but think life would be so much easier on her with a mama to translate the world and navigate teen years, kwim? 

 

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

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creekland

creekland

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I still think this is Lyme.  We will take the diagnosis but we are pursuing Lyme outside of the medical community in Iowa.  Lyme can be diagnosed as ALS. 

 

Then I'm praying you are correct.   :grouphug:

 

Even if not, your husband and kids are going to remember you as one awesome mama.  You've shown us a piece of it just in your writing and caring for them.

 

But still... praying for Lyme.

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East Coast Sue

East Coast Sue

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Pretty much just MNDs - Motor Neuron Diseases

 

It's asymmetrical which rules out a lot. It's painless which rules out more. The brain and spine look great, rules out more. Finally the muscle is atrophying. Toss in there cell death and atrophy. Nope, a pretty short list. And, really the four are pretty similar. Primary LS doesn't kill you but is, in other ways, like ALS. The other two MNDs are even more rare - many believe they eventually result in ALS and so are a slow moving progression towards it.

 

While he didn't want to talk about my interstitial pain being related yesterday, he and I both know that if this is ALS then it is related. It shows respiratory involvement and that is a more pressing concern. Dying this way will suck. No nice way about that.

 

I still think this is Lyme. We will take the diagnosis but we are pursuing Lyme outside of the medical community in Iowa. Lyme can be diagnosed as ALS. It's plain stupid that they don't give ALS patients two weeks of IV antibiotics. What are they scared of? They might kill them? LOL. Um, yeah.

 

 

 

 

 

I think so - I think once the official diagnosis comes in then a lot will be open to us. It's not a long wait. The EMG is on Monday and it should give us a pretty definitive picture now that everything else is ruled out. Iowa has an ALS Clinic and my guess is they are more experienced than our local neuros, kwim? Thank you for the recommendation, truly.

 

I wish there was a definitive test - ALS is more of a let's rule out absolutely everything else. Then, let's wait for your muscle to begin to atrophy. Then, let's give you another EMG. If we see muscle death in more than one area, ta da, we will know this is ALS. We're at that last step. The only issue I have is that Lyme can perfectly mimic ALS. And there is no way to differentiate the two. There isn't a test for ALS per se. Just clinical observation, ruling out everything else, then watching your muscle groups die one at a time. Blech.

 

 

You know what kills me? (Not meant as a pun, though I've found this week that I have a gift for dark humor.) Dying this way wouldn't be so horrible if I didn't know the kids were going to have to watch this. Can you fathom that? My kids will have to watch this. Dear God.

 

My 50-60 year old aunts and uncles were raked over the coals watching their 80 year old mother melt away to a skeleton due to dementia.

 

Abigail is 10. She is TEN. She is my right hand. This will SLAUGHTER this child. Elizabeth is fifteen. She is bright and bubbly and carefree. This is going to change her personality. :( Ana is getting married, having a baby. This should be the happiest year of her life and I am going to ruin it. The baby's first year is going to be this horrible blur of sadness. And Ella? No one gets Ella. She is so hyper that no one looks past her busy body and mind to see that her heart is absolutely solid gold. Who will love them like their mama loves them??? My husband is AMAZING. If anyone can do this, then he is the man to do it. But, even as Super Dad, seriously, this is just mama territory.

 

Cate and William will never remember so it's best on them. Olivia is so profoundly dyslexic that I wonder what the hell the school system will do to hurt her. Rebecca (13) is my aspie (not dx'd but still...) Thank God for our homeschool program. That will allow her to stay homeschooled and blossom but I can't help but think life would be so much easier on her with a mama to translate the world and navigate teen years, kwim?

 

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

Through tears, I have read your words of great wisdom and heartache. I will earnestly pray for you and your kids. I've learned so much from you. (((Hugs))) and prayers.

 

 

Sent from my iPhone using Tapatalk

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BlsdMama

BlsdMama

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:grouphug:  :grouphug:  :grouphug:

 

But you ARE taking the strong antibiotics, aren't you??  I mean, it's entirely possible it COULD be Lyme's, right?  

 

Praying for you, especially, and your whole family.

 

 

If I can find someone to prescribe them I would be happy to inject it myself. :P :(  Sadly, that is a challenge. We are contacting a woman in Dubuque to get muscle (?) tested.  If it comes back positive then we will be in contact with a LLMD to get antibiotics.  Really, what's the worst?  It is ironical that they don't just give all ALS patients a two week course of IV antibiotics, eh?  My urge to call TLC, who has an affinity for big families, and throw a fit about ALS and Lyme is getting strong.  I'm such a big mouth, lol.

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PeterPan

PeterPan

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It's time to get your kids with disabilities evals and IEPs. They have to have plans in place for anything. Not being somber but just realistic. My ds has an IEP. It took us two years and it's still not the best. We're doing more evals to go at it again. Usually you can do them in a year. If you make the request now, you could get it done by fall using the 120 days of the law. 

 

You write a letter saying you suspect learning disabilities (autism, dyslexia, etc.), give it to the secretary at the school, dated, retaining a copy, and that starts the clock ticking. 

 

You could also do private evals (which are almost always better) obviously. I'm just saying, being somewhat in your position myself (variable health, dc with significant, challenging SN), an IEP is legal protection. It's a document so that anyone who needs to help you knows the plan.

 

You can also write what is called a "letter of intent" for each child. You could write it this week, type, sign, print, and put in a file somewhere. A letter of intent is not legally binding, however it is *guidance* to anyone who would be guardians of your dc as to what you envisioned for them, what you dreamed. It's your gift to them. It would be something you could do now with all this emotion you're feeling. Write one for every single dc. With your SN dc, you can be very specific even, delineating schools, curricula, tutors, anything that would help them in the short term or long-term. It can say ANYTHING, anything you want that other person to know. It might give you some peace, knowing that, no matter what, people know what you intended for your kids, that you've given them that gift.

 

I think your kids will be fine watching whatever happens. Kids are resilient. You'll get them counseling. It will be fine.

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lauraw4321

lauraw4321

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From what I've read, the average is 2-5 years after diagnosis. Not to be so crass, but you seem to be ready for blunt conversations. Why do you think you only have one year? I agree with PP who are advising you on how you should plan, and assume the worst, in a sense, but is there a reason you think you will only have one more year?

 

:grouphug:  :grouphug:  :grouphug:

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BlsdMama

BlsdMama

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It's time to get your kids with disabilities evals and IEPs. They have to have plans in place for anything. Not being somber but just realistic. My ds has an IEP. It took us two years and it's still not the best. We're doing more evals to go at it again. Usually you can do them in a year. If you make the request now, you could get it done by fall using the 120 days of the law. 

 

You write a letter saying you suspect learning disabilities (autism, dyslexia, etc.), give it to the secretary at the school, dated, retaining a copy, and that starts the clock ticking. 

 

You could also do private evals (which are almost always better) obviously. I'm just saying, being somewhat in your position myself (variable health, dc with significant, challenging SN), an IEP is legal protection. It's a document so that anyone who needs to help you knows the plan.

 

You can also write what is called a "letter of intent" for each child. You could write it this week, type, sign, print, and put in a file somewhere. A letter of intent is not legally binding, however it is *guidance* to anyone who would be guardians of your dc as to what you envisioned for them, what you dreamed. It's your gift to them. It would be something you could do now with all this emotion you're feeling. Write one for every single dc. With your SN dc, you can be very specific even, delineating schools, curricula, tutors, anything that would help them in the short term or long-term. It can say ANYTHING, anything you want that other person to know. It might give you some peace, knowing that, no matter what, people know what you intended for your kids, that you've given them that gift.

 

I think your kids will be fine watching whatever happens. Kids are resilient. You'll get them counseling. It will be fine.

 

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.  

 

 

From what I've read, the average is 2-5 years after diagnosis. Not to be so crass, but you seem to be ready for blunt conversations. Why do you think you only have one year? I agree with PP who are advising you on how you should plan, and assume the worst, in a sense, but is there a reason you think you will only have one more year?

 

:grouphug:  :grouphug:  :grouphug:

 

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.

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Katy

Katy

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Can you go into the urgent care clinic, say your DH found an engorged tick on you, and last week when it was warm you spent some time at the state park?  Also say your DH got lyme disease from a tick there previously and you would like a full two week preventative course of antibiotics?

 

Or if not, you can get doxycycline for fish tanks (it's the same medicine as for people) yourself, without a prescription, online and in some pet stores. 

 

 

ETA:  When I got I got diagnosed with Lyme, a few days later I found an engorged tick on DH's head, just going to the walk in clinic and saying that was all he needed to get treated too.

Edited by Katy
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