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The ongoing saga update

BlsdMama

By BlsdMama,
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BlsdMama

BlsdMama

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I get questions every so often and so I thought I'd update. ;)

My health insurance *finally* approved IVIG.  While Mayo carries a double dx (Primary Lateral Sclerosis and Glycine Receptor Positivity) the University only had PLS.  The University officially changed my diagnosis to Stiff Person Syndrome so that I could get IVIG.  If it doesn't work we will go under the assumption it is PLS/MND.

So, I started IVIG about three weeks ago.  Got a loading dose.  Went into the hospital on a Sunday and got out on a Wednesday morning.  Developed a headache like no other Wednesday night and ended up back in the ER. I would have delivered eight babies before volunteering for a headache like that again!  Benadryl and Hydrocodone and a good night sleep and I woke up very nervous to open my eyes. :P ;)

The next dose was a week later - went beautifully.  No difference noted.

The next dose was another week later and the next day I had a very good balance day.  So good I opted not to use my cane. 

Here is the point where I mention while we were in the hospital I did three videos of my walk and balance with two of the docs.  I also saw a physical therapist that told me I was past a cane and needed to move onto forearm crutches.  I get that I'm a whiney baby but I had really just accepted and grown to love the cane.  (Pretty, shiny, pink, tiny bit of bling, you understand.)  

And then the next day was a good balance day and I opted not to use my cane.  Two days in a row does not happen here.  Let's be honest, I haven't had a good balance day getting out of bed in months.  My balance is always pretty wonky.
I think cognitively I was being impacted far more than I realized.  We knew I was dropping words but I didn't realize how much effort I was putting into finding the words.  They just flow now.  I am not continuously stopping, thinking, pausing again, then using a different word.  The clarity is remarkable - it's like when you thought your old glasses were fine, then you get a new prescription, kwim?!  

 

Last week my Grandpa died.  It really was a good death and wonderful celebration of life even if I'll miss him like the dickens.  :(  And I wore low heels.  I wasn't able to wear heels to my daughter's wedding last April.  Granted, the heels were a really bad call because the cold makes my rigidity worse and the cemetery was uneven ground, but I could do it, did do it.

That's all the good.

The bad is that spasms have begun.  I do NOT fit in with SPS at all.  I'm not in pain.  I don't have spasms.  SPS is a horrendously pain filled disease.  I have no pain except my ribs/sternum.  Weird, right?
Had a full cardio work up two weeks ago with a radiation induced stress test and none of it is heart related.  It is most likely spasms in my intercostal muscle creating pain/fatigue. 

My walk is not improving.  I'd say it's getting worse.  The rigidity is getting cocky - he's moving right up my leg at a good pace and it extends into my mid thigh now.  The cold really exacerbates it - if I shiver, I feel the rigidity/spasticity far worse.

After a lot of research, GlyR positivity is often something called SPS Plus.  The plus essentially stands for a host of crappy things that are *very* well handled with IVIG. SPS Plus is like SPS but with brain stem involvement.  It can affect word retrieval, balance, and eventually autonomic symptoms.

All in all?  All in all I feel a lot of trust in my God.  I do not feel trust in Science, in healing, or in being "well" as I don't think any of these offer me permanent solutions.  But I am living life and my anxiety is pretty much at bay.  
I changed my major from English to University of Iowa's Creative Writing program, arguably the best in the nation, and I'm writing more now than at any point in my life.  This has been quite the turn of events.

I'll be extraordinarily happy to put 2017 in the books and close the cover.  

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dsmith

dsmith

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I'm glad to see an update. I hope you continue to have improvements with IVIG. Did your doctors give you anything for the spasms? I get spasms in the same area and I accidentally figured out that Xanax helps take the edge off. I tried a Valium once, but then my leg muscles felt really weak, so I'll stick with the Xanax. If you continue to improve with IVIG would the doctors feel confident to rule out PLS/MND?

 

The creative writing program sounds great! I've always wanted to do that but it seems my creativity has completely left me! In my twenties I was constantly writing, now I can just manage to write a short paragraph about my day, lol. 

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BlsdMama

BlsdMama

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Thank you for the update; I've been wondering. Does the improvement with IVIG mean that it is not PLS?

 

Sure looks that way.  I wonder if they will keep the PLS tagged on there in case I don't see the improvement in my legs/ability to walk.  There is SO much support for MND and nothing for SPS as far as lending library/equipment, etc.  I have another muscle group showing atrophy but the EMGs are clean so far and so until that fails, it cannot be ALS.  PLS should *not* improve with IVIG at all.

 

 

I've been following your posts, and I'm glad to hear the IVIG appears to be helping!  Let's pray this is the right path!!!

 

Stiff Person Syndrome:  Ok, was the dude who named this just... not feeling creative?  LOL.  Sorry, I hate to find humor here, but what a name!  

 

LOL, okay, so the original name was supposedly Tin Man Syndrome - a little more creative but people probably found it too amusing, hence the more acceptable Stiff Man.  But then it was found to be predominantly women and so it was changed again to be so PC - Stiff Person.  Just think - only you and like 400 people in the US know this, lol.

 

 

 

I'm glad to see an update. I hope you continue to have improvements with IVIG. Did your doctors give you anything for the spasms? I get spasms in the same area and I accidentally figured out that Xanax helps take the edge off. I tried a Valium once, but then my leg muscles felt really weak, so I'll stick with the Xanax. If you continue to improve with IVIG would the doctors feel confident to rule out PLS/MND?

 

The creative writing program sounds great! I've always wanted to do that but it seems my creativity has completely left me! In my twenties I was constantly writing, now I can just manage to write a short paragraph about my day, lol. 

 

So here is where it gets a little weird.  I really don't have Classic SPS spasms.  If you watch YouTube they are wicked.  The spasms can tear people's muscles, break their bones, make them unable to draw breath because of spasms in their diaphragms.  (This is actually how some die.)  I have none of it.  I am mildly stiff in my tailbone and neck sometimes which could be part of SPS or, honestly, a bed I hate and being 40+, kwim?  I get spasms in my feet at night.  They go away.  The pain in my ribs/chest -they have given me plenty.  The traditional drug is Baclofen/Valium.  I am taking a low dose Baclofen but I am currently refusing the Valium.  Medicated Mommy is not for me until/unless I have to, kwim?  

 

I would assume continued improvement will end with a removal of PLS.  They videotaped my walk and that might end up being the measuring stick.  I have a 12 week trial which means I will see my docs both at Iowa and Mayo in February.  I guess we go from there.  God is growing me into a (slightly more) patient person in that I don't think we'll have real answers definitively for years.  I have researched SPS PERM (usually what glycine receptor antibody indicates) and there are published scientific studies that have suggested it is entirely pathogenic.  An example of brucellosis as the bacteria crossing the blood brain barrier and the result being SPS PERM (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4710105/)  And, frankly, brucella isn't nearly as ugly as Lyme..... Just saying.  I honestly believe Lyme was my first domino and now everything else has cascaded.

 

 

 

Thank you for the update. I hate to bother people very often, to ask.

I don't mind. ;)

 

 

Very sorry you have to deal with so much, but very grateful for the good medical care that seems to be helping, and also that you got into that GREAT writing program!  Are you in the MFA program?  I didn't think Iowa had a creative writing BA when we visited 8 years ago, but things do change.

They have an incredible graduate program - https://www.theatlantic.com/magazine/archive/2007/08/where-great-writers-are-made/306032/

 

I'm an undergrad currently and one can hope.  But Iowa holds its own with the ivies in this area.

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JoJosMom

JoJosMom

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Thank you for the update; I will continue to pray for you and yours.

 

WRT the IVIG headache: I had it twice and it's horrendous. Big (gentle) hugs. With me, both times it happened the nurse had tried to rush the infusion. I don't know whether this will help you or not, but maybe you could request a slower rate next time?

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BlsdMama

BlsdMama

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The ups and downs are exhausting.  First neuro visit in a while out of clinic yesterday and it was less than awesome.

 

Sigh.

 

Love that the balance seems to have improved.  The legs are going downhill though.  The left leg is where the right one was a year ago.  Sigh. Right foot is showing a hollow, marking suggested atrophy.

 

Still grateful for the balance improving but a little more sober today.

 

Going out with the hubby tonight.  Yessirree.

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Ausmumof3

Ausmumof3

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Thanks for letting us know. :grouphug:

 

I wonder if it's worth keeping your posts or some kind of written record? It seems like the kind of thing that may be helpful for someone else who is walking the same journey at another point in time maybe? Totally understand if that's not your thing but you write very well and I know sometimes that kind of thing is helpful to others.

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eternalsummer

eternalsummer

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I admire your unflagging (at least it seems unflagging to me) courage in dealing with all of this, and I'm surprised by how nebulous it all is - it seems like you're constantly sort of fumbling towards an understanding of what is going on and what to do about it, but the doctors are never quite sure and are apt to change their expectations and yours sort of as things develop.  I guess I thought (I know this is naive) that modern medicine and science had these things worked out more precisely and were more sure of themselves and their understanding of the world.  So much of it seems like it is still a mystery, it must be so frustrating!

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BlsdMama

BlsdMama

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Thanks for letting us know. :grouphug:

 

I wonder if it's worth keeping your posts or some kind of written record? It seems like the kind of thing that may be helpful for someone else who is walking the same journey at another point in time maybe? Totally understand if that's not your thing but you write very well and I know sometimes that kind of thing is helpful to others.

 

Do I admit to working on the book version?  That's such a big, huge thing to admit to.......  

 

This has been the best and worst thing in my life.  I changed my major this semester to Creative Writing at the U of Iowa.  It has to either be the best or worst decision I've ever made.   After all the nagging about useless majors I've done to my kids........

 

But this has been such a journey.  Not just the illness, which I'd lay odds to that I get ALS in March, (thank you God for slowness) but the whole thing - it is a testimony to the goodness of God, but moreover to be an encouragement to moms.  If nothing else, I'd love to alleviate the guilt the moms feel over not being ENOUGH in life.  I just want to wrap my words around them in comfort and let them know - you never had to be enough.  It was just enough in the little things you do - the making sure they have socks and the telling them no and balancing with yes.  It was enough when you fell short and enough when you tried but didn't.  All of it.  I have such clarity. I am still not enough but I was never meant to fill all the gaps.  And we moms feel it SO deeply and every time we realize we aren't enough, it twists the knife.  And it must be said OUT LOUD in writing that not being enough IS being a good mama.  The discouragement almost swallowed me whole.  I almost lost the fight with Not Good Enough.   I know one mom who did. :(  The world was better with her in it. I wish she had known it.  And I ache to know that there others who will lose the battle.

 

I was meant to write all of it.  I know it.

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BlsdMama

BlsdMama

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I admire your unflagging (at least it seems unflagging to me) courage in dealing with all of this, and I'm surprised by how nebulous it all is - it seems like you're constantly sort of fumbling towards an understanding of what is going on and what to do about it, but the doctors are never quite sure and are apt to change their expectations and yours sort of as things develop.  I guess I thought (I know this is naive) that modern medicine and science had these things worked out more precisely and were more sure of themselves and their understanding of the world.  So much of it seems like it is still a mystery, it must be so frustrating!

 

 

Oddly it isn't. I think because I know what's coming, it just isn't here yet.  I am so, so grateful to have a different neurologist.  My other one was a warm, wonderful, grandfather of a man. He was hell bent on encouraging me and I thank him for it.  But, my new dr at  the U?  He is amused by me.  I think we regard one another with respect.  I admire his straighforwardness. I went in last week and asked for a brucellosis test, lol.  He laughed at me and said, "So I think that's a blood test."  "Well," I told him, "We could do the blood test, but I want the CSF." "Kelly, I am NOT putting a needle in your spine for some ambiguous test."  Sigh.  "I respect that, but we both know you'll do an LP again.  So, I just ask, when we do it, that I get the CSF Brucella test."  He laughed and agreed.  We amuse one another.  He looked at my foot and told me we have a date this spring.  Another EMG because, really, what's not to love about tasing and needles.  I don't find it nearly as painful as what is send on the internet, AND thank God, it's not in my mouth, just on my legs.

 

This disease will show itself.  It's only a matter of time. And the courage is patience, not true courage.  I think it is a gift of God, certainly not of me.  I'm not a patient person.  But I also know, the more quickly I fail the EMG, the faster this will go.  If it draws out and I get no answer?  It is a win!  No answer is always better than ALS, lol.  Always.  I really wanted to believe it was "just" Stiff Persons.  But, it is a little out there.  The main symptom is spasms.  I wondered how I could have Stiff Persons and no spasms.

 

My neuro at Mayo is a very young woman.  I genuinely like her but I think she is too hopeful this is Stiff Persons. I think after this she will want a trial of plasmapheresis and I'll do it. Who wouldn't?   But it makes me sad to be in limbo, especially for my family.  They don't grasp how much of a longshot this Stiff Persons (GlyR - PERM) was - pretty much 1 in 7 million from best estimates.  So they thought this IVIG would make me well - like, completely WELL.  I mentioned my appointment to my sister and I thought she understood this was a long shot and she hadn't.  :(  I'm a little sick of breaking people's hearts. :(  And if she didn't realize it, then maybe I didn't explain it well to the kids?? :(  Or maybe they, like her, put all their hopes in the just maybe?  Ugh.  I have faith that it will be okay. The Lord scarcely needs me to raise these children.  But, I admit, a greediness to just wanting to be here.  I like them so much.  Every mother, or most, love their children, but I think maybe I admire them more than some.  I love that they are all so different, so unique.  I love that I can see, clearly, that they are their own selves and not extensions of me or their dad or their upbringing.  I love the one that is sweet, the one that is sassy, the one that is unsure, the one that is a wall, the one that is a ball of pure energy and joy.... each of them for their own selves.  It makes me sad to think I might not get to cheerlead. :(  But, and it's hard to not recognize this, it is true that without this disease, I might have just gone through each day and not paused to admire all of that spirit.  It's more than a might. I wouldn't have.  I would have Martha'd on, like I do.

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Meriwether

Meriwether

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The ups and downs are exhausting. First neuro visit in a while out of clinic yesterday and it was less than awesome.

 

Sigh.

 

Love that the balance seems to have improved. The legs are going downhill though. The left leg is where the right one was a year ago. Sigh. Right foot is showing a hollow, marking suggested atrophy.

 

Still grateful for the balance improving but a little more sober today.

 

Going out with the hubby tonight. Yessirree.

Is it possible that the deterioration was from before the new treatment?

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BlsdMama

BlsdMama

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Is it possible that the deterioration was from before the new treatment?

 

 

The atrophy?  I had noticed it before this week for sure but it's hollowing out more now.  So is it worse now because I'm using a brace?  Maybe.  <3  It's possible.  The truth is I think we can safely say two things.

 

1. We know nothing for sure.

2. We will know eventually.

 

And that's about the gist of it - for better or worse.

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PinkTulip

PinkTulip

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Oddly it isn't. I think because I know what's coming, it just isn't here yet. I am so, so grateful to have a different neurologist. My other one was a warm, wonderful, grandfather of a man. He was hell bent on encouraging me and I thank him for it. But, my new dr at the U? He is amused by me. I think we regard one another with respect. I admire his straighforwardness. I went in last week and asked for a brucellosis test, lol. He laughed at me and said, "So I think that's a blood test." "Well," I told him, "We could do the blood test, but I want the CSF." "Kelly, I am NOT putting a needle in your spine for some ambiguous test." Sigh. "I respect that, but we both know you'll do an LP again. So, I just ask, when we do it, that I get the CSF Brucella test." He laughed and agreed. We amuse one another. He looked at my foot and told me we have a date this spring. Another EMG because, really, what's not to love about tasing and needles. I don't find it nearly as painful as what is send on the internet, AND thank God, it's not in my mouth, just on my legs.

 

This disease will show itself. It's only a matter of time. And the courage is patience, not true courage. I think it is a gift of God, certainly not of me. I'm not a patient person. But I also know, the more quickly I fail the EMG, the faster this will go. If it draws out and I get no answer? It is a win! No answer is always better than ALS, lol. Always. I really wanted to believe it was "just" Stiff Persons. But, it is a little out there. The main symptom is spasms. I wondered how I could have Stiff Persons and no spasms.

 

My neuro at Mayo is a very young woman. I genuinely like her but I think she is too hopeful this is Stiff Persons. I think after this she will want a trial of plasmapheresis and I'll do it. Who wouldn't? But it makes me sad to be in limbo, especially for my family. They don't grasp how much of a longshot this Stiff Persons (GlyR - PERM) was - pretty much 1 in 7 million from best estimates. So they thought this IVIG would make me well - like, completely WELL. I mentioned my appointment to my sister and I thought she understood this was a long shot and she hadn't. :( I'm a little sick of breaking people's hearts. :( And if she didn't realize it, then maybe I didn't explain it well to the kids?? :( Or maybe they, like her, put all their hopes in the just maybe? Ugh. I have faith that it will be okay. The Lord scarcely needs me to raise these children. But, I admit, a greediness to just wanting to be here. I like them so much. Every mother, or most, love their children, but I think maybe I admire them more than some. I love that they are all so different, so unique. I love that I can see, clearly, that they are their own selves and not extensions of me or their dad or their upbringing. I love the one that is sweet, the one that is sassy, the one that is unsure, the one that is a wall, the one that is a ball of pure energy and joy.... each of them for their own selves. It makes me sad to think I might not get to cheerlead. :( But, and it's hard to not recognize this, it is true that without this disease, I might have just gone through each day and not paused to admire all of that spirit. It's more than a might. I wouldn't have. I would have Martha'd on, like I do.

Huge Hugs. You clearly made the right decision by changing your major to writing - this is so well-said.

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Meriwether

Meriwether

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The ups and downs are exhausting. First neuro visit in a while out of clinic yesterday and it was less than awesome.

 

Sigh.

 

Love that the balance seems to have improved. The legs are going downhill though. The left leg is where the right one was a year ago. Sigh. Right foot is showing a hollow, marking suggested atrophy.

 

Still grateful for the balance improving but a little more sober today.

 

Going out with the hubby tonight. Yessirree.

Is it possible that the deterioration was from before the new treatment?

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