Jump to content

Menu
Giving You and Your Child a Road Map to the Best Possible Education
The Well-Trained Mind Community

I admit it, I'm really starting to get scared.

BlsdMama

By BlsdMama,
in The Chat Board

 Share

Recommended Posts

  • Replies 120
  • Created
  • Last Reply

Top Posters In This Topic

Popular Days

Top Posters In This Topic

Popular Days

Popular Posts

BlsdMama
BlsdMama

You know, DH & I were just talking about this morning - the neuro here never did.  Just ended up doing the referral out.  I'm certain they will do all of that there and, in a little attempt to fee

JoJosMom
JoJosMom

I will pray for your health and for peace in your heart.  :grouphug:   “Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, ne

mom2samlibby
mom2samlibby

Supplementing can throw you results off.  If you are planning on having them tested on the 6th, I'd hold off from taking them.  

Guest

Guest

Posted
Posted

I would be scared too. And here is what I will tell you. Naming the cause won't make it worse. It is the only way you can find out what to do ... if anything.

 

I'm telling you this as the first person to stick my head in the sand. I'm not very brace, even when I know that knowing is power.

 

(((you)))

Link to comment
Share on other sites
luuknam

luuknam

Posted
Posted

:grouphug:

 

IF you have that, maybe being young gives you a better prognosis. 10% survive 10+ years. My aunt got diagnosed with Parkinson's at 40yo after having some symptoms for a few years, and she died this fall at 70-something (average life expectancy for that is 7-14 years according to Wikipedia). Not that either of those things is good.

 

Of course, still hoping it's something less bad and more treatable.

Link to comment
Share on other sites
Peaceful Isle

Peaceful Isle

Posted
Posted

My friend was diagnosed with ALS about two years ago. Her symptoms were very different than yours.

One day, she couldn't get up from the floor. Her legs would not work. She is only 30. Makes me doubt you would have it.

 

Your limping , dragging leg and spasticity sounds more like MS.

 

My husband was diagnosed with MS about 7 years ago and it sounds more like that, but I'm not an expert. Could it maybe be that? Did your MRI do contrast dye ?

He is actually doing extremely well right now.

 

Anyways, prayers for you and your sweet babies. Praying so deeply for you right now. The journey of unknown illness is stressful , but God is with you. 💕

  • Like 1
Link to comment
Share on other sites
StephanieZ

StephanieZ

Posted
Posted

:( :( :( 

 

I'm so sorry. Honestly, if I were you, I'd be really scared, too. 

 

I'm glad you are going to see a high level specialist/facility. 

 

I very much hope you get good news and find a treatable cause for your symptoms. 

 

When is your appointment? 

 

Do not hesitate to advocate for yourself, or to have a friend or family member advocate for you. Some people are more comfortable with a slow diagnostic process, as they can put the worries out of their mind and ease into a diagnosis. Others (self included) are so anxious during that process that they would prefer to expedite the process and hurry over to the top notch specialist with every test available immediately . . . in order to get to an answer ASAP, even if that answer is not one you'd want to hear. Wherever YOU fall on this spectrum, try to advocate for yourself so you can get the care you need at the pace YOU prefer. 

 

(((((hugs))))) and best wishes for good news ASAP.

  • Like 1
Link to comment
Share on other sites
sbgrace

sbgrace

Posted
Posted (edited)

:grouphug: I'm sorry you have all this fear, these symptoms, and no answers.

I had an ALS scare when my kids were young, and I can imagine some of how you feel. Not being able to sleep, from the twitching or the fear either one, made me twitch even more. In the back of my mind, I think neurology said twitching on both sides of the body is reassuring. I remember a nurse telling me there were some new treatments for ALS, if the worst turned out to be true. This was years ago, and I wasn't having a lot of what you're experiencing (I had constant twitching, strange sensations, vertigo, fatigue primarily--EMG's and MRI's were normal, I don't remember other stuff in neuro exams). I don't mean to minimize. I know you are terrified. I would be too.

 

I feel for you. I am praying for you.

Edited by sbgrace
Link to comment
Share on other sites
TranquilMind

TranquilMind

Posted
Posted

My left leg is sitting here twitching like crazy.

 

I finally admit it.  I'm *really* scared.

 

I can't run - gait is off.

My left leg drags.

I have clonus, though mildly.

My left leg started twitching a little over a week ago -100, 200, 300+ times a day off and on.

Tonight is the first time my right leg has twitched. 

My reflexes in my right leg are totally crazy hyper-reflexive.

I have zero pain.

I have negative MRIs (four of them) and a clean EMG so far.

 

I will admit it, I'm really freaking out that I'm about to be diagnosed with ALS a week before my 40th birthday with little, little kids.

I'm waking up in the middle night and not sleeping great.   :(

 

The neuro has referred me to U of Iowa because well, I'm *really* young.  Those hyperreflexes?  I'm just SO young she says.  Yeah, on just the right side?  

 

I get the feeling this isn't good.

 

Praying that this is just a scare that amounts to nothing (in Jesus' name...as I am a Christian, so I hope that's ok).  Praying for healing for you. 

 

  • Like 4
Link to comment
Share on other sites
BlsdMama

BlsdMama

Posted
  • Author
Posted

Did you ever have your B12, iron, folate, and D levels tested?

 

 

You know, DH & I were just talking about this morning - the neuro here never did.  Just ended up doing the referral out.  I'm certain they will do all of that there and, in a little attempt to feel like I'm being proactive I went and got B Complex with 12, D3, and magnesium this morning.  If nothing else it made me feel like I was doing something, kwim?

 

 

:grouphug: :grouphug: :grouphug:

 

I would be scared too.  Google and support boards would make things worse, but I wouldn't be able to stop myself. 

 

I'm really sorry that you are going through all of this right now, especially right before your birthday and Christmas.

 

I am adding you to my prayer list. 

 

When is your appointment at U of Iowa? I don't know about neurology, but I seem to remember DH saying that they have a really well regarding neuro-ophthalmology program.

 

The Iowa appt. is surprisingly quick - January 6th.  I was pleased to get in there relatively fast.  Getting in some departments can take months, so a few weeks is good.  

 

 

Did they do the lower back MRI yet?

 

They did and I *really* thought they would find something there.  Nope, was told it looks good, which was, well, not good.

 

 

I'm sorry. I think heading to a teaching hospital is a very good idea. I definitely understand how scared and worried you are. The issues are worrisome enough but not having answers makes things even worse.

 

Yeah, a label, a name, something would be better than nothing I think?

 

 

I would be scared too. And here is what I will tell you. Naming the cause won't make it worse. It is the only way you can find out what to do ... if anything.

 

I'm telling you this as the first person to stick my head in the sand. I'm not very brace, even when I know that knowing is power.

 

(((you)))

 

:001_wub:

 

 

:grouphug:

 

IF you have that, maybe being young gives you a better prognosis. 10% survive 10+ years. My aunt got diagnosed with Parkinson's at 40yo after having some symptoms for a few years, and she died this fall at 70-something (average life expectancy for that is 7-14 years according to Wikipedia). Not that either of those things is good.

 

Of course, still hoping it's something less bad and more treatable.

 

You and me both! ;)

 

 

My friend was diagnosed with ALS about two years ago. Her symptoms were very different than yours.

One day, she couldn't get up from the floor. Her legs would not work. She is only 30. Makes me doubt you would have it.

 

Your limping , dragging leg and spasticity sounds more like MS.

 

My husband was diagnosed with MS about 7 years ago and it sounds more like that, but I'm not an expert. Could it maybe be that? Did your MRI do contrast dye ?

He is actually doing extremely well right now.

 

Anyways, prayers for you and your sweet babies. Praying so deeply for you right now. The journey of unknown illness is stressful , but God is with you. 💕

 

My neuro really thought MS.  We did MRIs of the head, neck, upper back first - with and without contrast.  She said there was some white spots but not lesions, just what is expected with aging.  I'd really love it not to be that.  Clonus, hyperreflexia, foot drop, and fasiculations tend to cry peripheral nervous system.  But PLS is on the  table too and, while rare, doesn't kill you.  Not only that but there are hundreds of weird little diseases out there.... Maybe it's one that Google doesn't readily find. :P

 

I'm sorry all.  I had a bit of a mental crisis last night. I was sitting here on the computer when my left leg (the good one) started twitching.  That was brand new and it *really* freaked me out.  We had been essentially just calling the problem my leg, as in my right leg is my bad leg. And I think last night was that straw that broke the camel's back. It started and I just started sobbing.  I'm feeling much better today mentally and just gathering myself back together.  

  • Like 16
Link to comment
Share on other sites
mommytobees

mommytobees

Posted
Posted

You know, DH & I were just talking about this morning - the neuro here never did.  Just ended up doing the referral out.  I'm certain they will do all of that there and, in a little attempt to feel like I'm being proactive I went and got B Complex with 12, D3, and magnesium this morning.  If nothing else it made me feel like I was doing something, kwim?

 

 

 

The Iowa appt. is surprisingly quick - January 6th.  I was pleased to get in there relatively fast.  Getting in some departments can take months, so a few weeks is good.  

 

 

 

They did and I *really* thought they would find something there.  Nope, was told it looks good, which was, well, not good.

 

 

 

Yeah, a label, a name, something would be better than nothing I think?

 

 

 

:001_wub:

 

 

 

You and me both! ;)

 

 

 

My neuro really thought MS.  We did MRIs of the head, neck, upper back first - with and without contrast.  She said there was some white spots but not lesions, just what is expected with aging.  I'd really love it not to be that.  Clonus, hyperreflexia, foot drop, and fasiculations tend to cry peripheral nervous system.  But PLS is on the  table too and, while rare, doesn't kill you.  Not only that but there are hundreds of weird little diseases out there.... Maybe it's one that Google doesn't readily find. :p

 

I'm sorry all.  I had a bit of a mental crisis last night. I was sitting here on the computer when my left leg (the good one) started twitching.  That was brand new and it *really* freaked me out.  We had been essentially just calling the problem my leg, as in my right leg is my bad leg. And I think last night was that straw that broke the camel's back. It started and I just started sobbing.  I'm feeling much better today mentally and just gathering myself back together.  

 

 

WAIT!! What?!?!?

 

Who made that evaluation?

 

I ask this because there are MS lesions that can look funny and given your symptoms.... I would keep jumping to MS.

 

Do you have access to your CD's? ARGH! Jan 6 can't come soon enough. Have your records already made it there? Make sure you have your images in hand (NOT the reports!).

 

Kris

 

 

SaveSave

  • Like 3
Link to comment
Share on other sites
Peaceful Isle

Peaceful Isle

Posted
Posted

WAIT!! What?!?!?

 

Who made that evaluation?

 

I ask this because there are MS lesions that can look funny and given your symptoms.... I would keep jumping to MS.

 

Do you have access to your CD's? ARGH! Jan 6 can't come soon enough. Have your records already made it there? Make sure you have your images in hand (NOT the reports!).

 

Kris

 

 

Save

Save

I agree! White spots on the brain are not normal. My dh took a while for his diagnosis. He also got a spinal tap to check for "certain strands " in the fluid, I think it is what they called it.

  • Like 1
Link to comment
Share on other sites
mommytobees

mommytobees

Posted
Posted

I agree! White spots on the brain are not normal. My dh took a while for his diagnosis. He also got a spinal tap to check for "certain strands " in the fluid, I think it is what they called it.

 

They would be looking for oligoclonal bands (o-bands). It's the pieces of myelin. There is a small window of opportunity to actually locate the bands in the CSF.

 

Kris

  • Like 1
Link to comment
Share on other sites
luuknam

luuknam

Posted
Posted

Where else would they be if they were on the MRI of the brain?

 

She didn't say they were on the MRI of the brain:

 

We did MRIs of the head, neck, upper back first - with and without contrast.  She said there was some white spots but not lesions, just what is expected with aging. 

 

So, possibly spine, possibly peripheral nervous system, who knows?

Link to comment
Share on other sites
mommytobees

mommytobees

Posted
Posted

I FOUND IT!!!
 

I knew I had read a journal article....

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3079372/

 

This is NOT light reading. My foci:

 

"Cortical lesions are poorly detectable on routine MRI sequences such as T2-weighted (T2-W) spin echo and fluid-attenuated inversion recovery (FLAIR) due to potential several reasons: 1) smaller lesions size; 2) smaller difference in T1 and T2 relaxation times between lesions and surrounding tissue in GM than in WM; 3) low inflammatory infiltration of cortical lesions and the less frequent association with blood brain barrier (BBB) breakdown; 4) partial volume effect resulting from the CSF of adjacent cortical sulci. It has been shown that an improvement in cortical lesion detection in MS can be achieved by using a double inversion recovery (DIR) (18) sequence. DIR imaging consists of two adiabatic non-selective inversion pulses applied before a Turbo Spin Echo sequence, in order to suppress the signal from two tissues with different longitudinal relaxation times simultaneously. In the brain, DIR is used to selectively image the GM by nulling the signal from WM and cerebrospinal fluid (19) (Fig. 1). DIR imaging increases cortical lesion detection rates per patient by an average of 152% when compared with FLAIR imaging and 500% when compared with conventional T2-W MRI, (20)."

 

and

 

"histological study has demonstrated that both patients with SP-MS and PP-MS are characterized by extensive demyelination of the cortex and more diffuse rather than focal injury in normal-appearing white matter (NAWM)"

 

{{{{hugs}}}}}

 

You need treatment. The worst of all of this is the fact that you are suffering and they are DOING NOTHING. I understand (better than most) that they can't treat without knowing what it is... that's why you got into Iowa so fast, Jan 6 is FAST. However, ARGH!!!!!! You have to live with this. 

 

My daughter is now at 9 1/2 weeks with no treatment. SOB. Heartbreak. She's losing the ability to read. It's killing me. I really understand how you are feeling. {{{hugs}}}

 

Jan 6 will not come fast enough for me just in my worry for you.

 

Kris

  • Like 1
Link to comment
Share on other sites
mom2samlibby

mom2samlibby

Posted
Posted

You know, DH & I were just talking about this morning - the neuro here never did.  Just ended up doing the referral out.  I'm certain they will do all of that there and, in a little attempt to feel like I'm being proactive I went and got B Complex with 12, D3, and magnesium this morning.  If nothing else it made me feel like I was doing something, kwim?

 

 

Supplementing can throw you results off.  If you are planning on having them tested on the 6th, I'd hold off from taking them.  

  • Like 10
Link to comment
Share on other sites
BlsdMama

BlsdMama

Posted
  • Author
Posted

WAIT!! What?!?!?

 

Who made that evaluation?

 

I ask this because there are MS lesions that can look funny and given your symptoms.... I would keep jumping to MS.

 

Do you have access to your CD's? ARGH! Jan 6 can't come soon enough. Have your records already made it there? Make sure you have your images in hand (NOT the reports!).

 

Kris

 

 

SaveSave

 

 

I don't have access Kris, but this seems so much more likely - the MS rather than other things.  

I think I'll just grab hold of this one instead until I know more. I know MS can be really bad for some folks and I'm so sorry for those who suffer from it - I don't mean to minimize at all.

All the tests have already been sent to the university so I would assume that's good enough or no?

  • Like 1
Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
 Share
Go to topic listing
×
×
  • Create New...