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Today sucked. - Update #201


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#201 BlsdMama

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Posted 23 March 2017 - 09:41 AM

*
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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.  


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#202 Sue in TX

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Posted 23 March 2017 - 09:46 AM

Rejoicing that for now there is no diagnosis- praying that comes in April with the Lyme Dr.


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#203 BlsdMama

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Posted 23 March 2017 - 09:48 AM

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?


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#204 Reluctant Homeschooler

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Posted 23 March 2017 - 09:49 AM

So glad you got an appointment with the Lyme doc. So sorry for the uncertainty and ongoing hell you're dealing with.


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#205 texasmom33

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Posted 23 March 2017 - 09:50 AM

Thanks for the update. Been thinking and praying for you.

#206 mumto2

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Posted 23 March 2017 - 09:50 AM

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.

#207 Selkie

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Posted 23 March 2017 - 09:52 AM

I am thrilled for you that your EMG was normal! Such happy news!


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#208 Ali in OR

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Posted 23 March 2017 - 09:56 AM

We'll take the good news and pray for some answers that lead to HEALING!


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#209 happysmileylady

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Posted 23 March 2017 - 10:16 AM

:hurray: :hurray: :hurray: for a clean EMG

 



#210 mommyoffive

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Posted 23 March 2017 - 10:17 AM

I am so glad it came back normal.  I am glad you are going to a Lyme doctor.  I hope that provides the answers that you need.



#211 Mimm

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Posted 23 March 2017 - 10:27 AM

I am thrilled at your non-diagnosis! I've been stalking this thread for days. You've been on mine and my daughter's minds so much this week.



#212 Catwoman

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Posted 23 March 2017 - 10:37 AM

Thank you for the update -- I never thought I'd be praying for someone to have Lyme disease, but all things considered, it seems to be the best possibility. I'm so glad it's looking like it's not ALS!!! :grouphug:
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#213 insertcreativenamehere

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Posted 23 March 2017 - 10:41 AM

So glad for your update and your upcoming appointment. :)



#214 reefgazer

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Posted 23 March 2017 - 10:46 AM

This is such good news! If you have to be diagnosed with one or the other, I'm hoping you have Lyme!

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.


Edited by reefgazer, 23 March 2017 - 10:53 AM.


#215 BearWallowSchool

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Posted 23 March 2017 - 11:07 AM

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.


This. What's the deal? Why won't they?

I don't post much, but I've thought about you a lot. It feels weird to hope you have Lyme disease. I will hope for Lyme, but pray that it all goes away and you are healed. :)

Edited by BearWallowSchool, 23 March 2017 - 11:51 AM.

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#216 Jaybee

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Posted 23 March 2017 - 11:08 AM

Your update is encouraging! Thanks for letting us know!



#217 Jean in Newcastle

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Posted 23 March 2017 - 11:15 AM

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.

 

Because long term antibiotics have risks.  I was on antibiotics for 6 months straight one year.  The next year I was on antibiotics for 7 months straight.  It was very hard.  It kills good gut flora even though I was very religious about taking high doses of probiotics separated by a couple of hours from the antibiotics.  Antibiotics used long term often stop working.  Then you have to go to another one - not just in the same class of antibiotics, but one in another class.  I ended up going through 8 different classes of antibiotics. In my case, because it was active infections that were getting worse, they were running out of options.  At the end, my body was just reacting to any antibiotic because my immune system was overreacting big time.  We finally got a hold of it, but it was a very dicey time.  And I had to have other treatments which were very painful to help support my body so that it would finally kick in. 

 

I'm now on medications for my immune system which have made a world of difference but my team of doctors (because by the end I had four doctors following all of this and helping to support me) are very alert to even the slightest chance of me having infections again.  My gut is only now starting to recover a couple of years later.  My liver is also only now starting to get out of the worrisome range in it's numbers.  My doctors still monitor me every 3 months (unless something pops up where I might need to go in sooner). 


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#218 MercyA

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Posted 23 March 2017 - 11:26 AM

Thank you, Jesus! :hurray:  :hurray:  :hurray: 

 

We'll keep praying.  :grouphug:


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#219 clementine

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Posted 23 March 2017 - 11:26 AM

Great update!  Praying for the best April Christmas ever!!!



#220 Jean in Newcastle

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Posted 23 March 2017 - 11:33 AM

PS - I also got C-Diff from being on long term antibiotics.  Very difficult, painful  and hard to treat as well. 

 

OP - I am not posting things about antibiotics to discourage you.  But just to point out that doctors have reasons for being careful about how they go about all this.  If you go this route, it may be the best thing for you but you want to be monitored by a good doctor for the best possible outcomes. 


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#221 displace

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Posted 23 March 2017 - 11:45 AM

Praying for you

#222 J-rap

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Posted 23 March 2017 - 11:59 AM

Wow!  What an encouraging update!!  Thanks for letting us know!  Will continue to keep you in my prayers.



#223 Arctic Mama

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Posted 23 March 2017 - 12:19 PM

I am so thrilled for you on the clean emg! Praise God! Lyme isn't awesome but it's a heck of a lot better for you long term, so I hope you can find a good Lyme doctor to help you with this. I'm absolutely rejoicing for you and your family!
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#224 Meriwether

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Posted 23 March 2017 - 01:16 PM

:hurray:  :hurray:  :hurray:  :hurray:  :hurray:  A clean EMG! 


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#225 Rebecca

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Posted 23 March 2017 - 01:52 PM

BlsdMama,

 

I am SO so so so so glad to read this update.

 

Thank you for sharing,

Rebecca


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#226 creekland

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Posted 23 March 2017 - 02:01 PM

Adding my sense of relief with this news!   :party: 

 

Thanks for updating - and may they figure out what it all is and be able to fix it for you...


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#227 zoobie

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Posted 23 March 2017 - 02:04 PM

Yay for ALS being ruled out. I hope you get answers soon. :grouphug:

#228 Jenn in FL

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Posted 23 March 2017 - 02:06 PM

Kelly... :party:  :party:  :party:

 

In honor of post # 201, I think you need a new "To Do" list and in no particular order:

 

 

 

Grab your 'right hand gal'   :001_wub:  and go kiss those last two babies.

 

Think about making an heirloom baby gift for the impending arrival!

 

Savor your bright and bubbly gal skipping out the door.

 

Give the lil lady with a heart of solid gold an extra tight hug.  Her momma "gets" her.

 

Reflect on the joy of being able to have your middle two ladies at home with you.

 

The boys???   Feed 'em.  Again.

 

Remember to tell your DH how AMAZING you think he is.

 

 

The entire Hive is sharing your joy today.  A CLEAN report is HUGE.  No words here...just joy.


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#229 heatherwith3

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Posted 23 March 2017 - 02:55 PM

I'm so glad to hear this news! I've been praying for you a lot.
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#230 ktgrok

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Posted 23 March 2017 - 03:25 PM

oh i am SO glad!!!! crying happy tears!



#231 MamaStephanina

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Posted 23 March 2017 - 03:27 PM

Happy happy dancing around happening!

#232 Liz CA

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Posted 23 March 2017 - 03:32 PM

Halleluja! So relieved ALS is unlikely. I will pray you get a definite diagnosis so treatment can begin.



#233 edelweiss

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Posted 23 March 2017 - 03:49 PM

Very excited and relieved to read this update!

#234 Ausmumof3

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Posted 23 March 2017 - 03:55 PM

I am so glad to read this.

#235 Ewe Mama

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Posted 23 March 2017 - 04:50 PM

I have happy, thankful tears from your update.

#236 JoJosMom

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Posted 23 March 2017 - 05:05 PM

Thank you for the update -- I never thought I'd be praying for someone to have Lyme disease, but all things considered, it seems to be the best possibility. I'm so glad it's looking like it's not ALS!!! :grouphug:

 

Exactly what I wanted to say.

 

Thank you, Jesus!


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#237 melmichigan

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Posted 23 March 2017 - 05:13 PM

Crying happy tears here too.  I'm so glad to hear the EMG was clean!     :party:



#238 Another Lynn

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Posted 23 March 2017 - 06:07 PM

SO, SO thankful to read your update!  Praise God!!!  



#239 Innisfree

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Posted 23 March 2017 - 06:12 PM

So glad to hear this news! Now hoping Lyme turns out to be the answer and respond beautifully to treatment.

#240 Spryte

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Posted 23 March 2017 - 06:13 PM

Huge happy hugs!

May your new LLMD be fabulous!
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#241 Quill

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Posted 23 March 2017 - 06:33 PM

So hopeful after reading your update!

#242 MistyMountain

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Posted 23 March 2017 - 06:54 PM

I am relieved to hear your update. I was worried when you did not post for a few days.

#243 jjeepa

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Posted 23 March 2017 - 07:03 PM

Yay for the clean test!  Thankful to read your encouraging update!  



#244 38carrots

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Posted 23 March 2017 - 07:20 PM

I've been thinking about you a lot. So relieved to read this update.



#245 Jackie in AR

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Posted 24 March 2017 - 12:18 PM

Praise God! What a wonderful update. :party:



#246 Hen

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Posted 24 March 2017 - 03:11 PM

so relieved for you!!! 



#247 AnneBlessedx4

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Posted 24 March 2017 - 03:19 PM

I am so very glad for you! !!!!!!!!!!!!!!!!!!!!!!!*!!!there aren't enough exclamation points to express it!

#248 idnib

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Posted 24 March 2017 - 06:37 PM

:hurray:  :hurray:  :hurray:



#249 MomsintheGarden

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Posted 24 March 2017 - 07:08 PM

Hooray! Hope you get some Lyme answers soon.  I still think there's a good chance it's Lyme.