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

[BlsdMama]

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

 

 

Thank you for finding and pushing all of that.  I have no idea how you're dealing with this.  It sucks in ME but I cannot imagine dealing with anything having to do with my kids, kwim?

 

(((((((((((((((((((Hugs)))))))))))))))))) 

[BlsdMama]

I think I'm finding I don't do worry very well....  As a precaution (and because it's that time of year to re-evaluate insurance) we signed up for extra insurance for me in November.  That was great and we'd been meaning to do it, but a little sobering.  Then no answers on the first set of MRIs, no answer on the EMG, and no answer on the lower MRI with additional symptoms...

Then, as the icing on the cake, we ended up in Labor & Delivery for my daughter on Saturday. She's 21 weeks.  (The back story - my mom lost a little one at 18+ weeks - then they did cerclages with her next three, I lost one at 26 weeks and almost lost another at 20 but they put in a cerclage, then my sister lost twin boys last January at 22 weeks.)  They diagnosed her with kidney stones - the same thing they told my sister a week and a half before she have the boys.  :(  We're being super aggressive with her care, she has an appointment tomorrow morning with a urologist to confirm or deny their guess so we can talk progesterone, fetal fibronectin, etc.

 

And so then last night, my brother did something jerky, and I flipped. Sigh.  I'm normally pretty even keeled.  Kicking myself this morning.  Can't change people, can only change your reaction to people.  I wonder how many times I have to learn the same thing??????

 

I appreciate all the prayers and thoughts more than ya'all can imagine.  My DH is off from the 23rd until the 3rd so we are going to have a relaxing and wonderful two weeks of Daddy time.  

 

Thank you so much again. I'm really sorry for being so dramatic, I just don't really want to say things out loud around here, kwim?

[ktgrok]

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?

Agree it sounds WAY more like MS. And those lesions aren't always visible. And there are some very good treatments for MS. If that ends up being the diagnosis, message me. My friend has it and has done SO much research and is on a great protocol that has pretty much stopped it in it's tracks. She's tried all the meds, knows how to work the insurance companies to get the meds covered, etc. 

[mommytobees]

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?

 

 

{{{{HUGS}}}}}

 

First, because you've entered into the World of Weird, no matter the dx, you _need_ to have copies of your own records. I have a medical book for Ky and I'm putting together a medical book for Lori. Contact the places that did your imaging and any blood work. File the paperwork with them to get copies of your own images as well as the Radiologist's reports (they will usually put those on the CD). Second, contact the place that did the MRI w/ & w/o contrast, ask their records department what specifically was sent to Iowa. The question to ask: was a CD of images sent to the University? If it was, then just get copies for your own records (that can take 30 days, but no biggie). If it was not, explain that they worked you in for Jan 6 (because they did) and could you please be allowed to hand deliver a copy of the CD images--most people will give pity on you and allow you to go and pick them up yourself. 

 

So, to more directly answer your question: "all the tests" is perfect IF that includes the actual images. A good Neuro will NOT only want the radiologist's report. They will want to SEE the images first hand. And, while that isn't to say that anything abnormal won't be missed or misunderstood, they will want to see them with their own eyes. 

 

{{{hugs}}} MS is called a snowflake disease. One person's is different than another's. My son's brain is riddled with lesions. No joke, he has dozens of lesions...they don't count them anymore. When he gets a new MR, they simply compare the new images to the old images, one small section at a time. But, he has fewer symptoms than another teenager I know who has 3 lesions total. There is no minimizing or comparing. I was so relieved when they dx'ed Ky with MS. So much so, that his first Neuro called a Psych consult on me because she thought I wasn't handling it well. HAHAHAH! I'm not dumb...they thought he has lymphoma of the CNS. I know what THAT would have entailed and MS is a cake walk compared. Is MS a cake walk? Oh, heck no! But, compare it to the "other options"......

 

{{{hugs}}}

 

Kris

[mommytobees]

Thank you for finding and pushing all of that.  I have no idea how you're dealing with this.  It sucks in ME but I cannot imagine dealing with anything having to do with my kids, kwim?

 

(((((((((((((((((((Hugs)))))))))))))))))) 

 

{{{{{{{hugs}}}}}}}}}} it sucks no matter who it is. 

 

Kris

[mommytobees]

Agree it sounds WAY more like MS. And those lesions aren't always visible. And there are some very good treatments for MS. If that ends up being the diagnosis, message me. My friend has it and has done SO much research and is on a great protocol that has pretty much stopped it in it's tracks. She's tried all the meds, knows how to work the insurance companies to get the meds covered, etc. 

 

You can never have too many people in your court.

 

I'll help too!

 

Kros

[Valley Girl]

 

 

Thank you so much again. I'm really sorry for being so dramatic, I just don't really want to say things out loud around here, kwim?

 

You're not being dramatic. You're being human. Who wouldn't be scared? Glad you felt you could share your fears here. Sometimes we just can't say those things to those closest and dearest to us.

 

May 2017 bring you some answers and relief of your fears, BlsdMama.

[mommyoffive]

Sending some more prayers your way.

 

 

And sending some more to your dd. 

[Peaceful Isle]

Don't apologize for being scared :( so so normal. Stress does some wonders on our bodies, so try to relax and rest as much as is possible during this time.

 

Just a note of encouragement : if it is MS, know there are waxing and waning of the disease. My dh , at one time, couldn't walk without a cane, but a few years later is running around with my boys. Also, they have wonderful meds for MS that stops the progression. It is definately hard, but definately doable. Modern medicine has come such a long way with the treatment of MS.

 

Praying for you and your sweet babies and husband during this time.

[Lawyer&Mom]

Prayers for you and your daughter. So much on your plate right now. Keep us posted, we are rooting for you.

[EKS]

:grouphug:

[LarlaB]

BlsdMama, you and your family are in my thoughts and prayers. Really.

 

Its excellent that you feel comfortable to share, vent, worry aloud and be transparent here. It's SO important and necessary in the journey.

[katilac]

Positive thoughts headed your way.

[TravelingChris]

I have you on my personal prayer list and will be updating it.  

[Pippen]

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.

Have you been tested (and retested) for Lyme Disease? I have a friend who had many of the same symptoms. Hers prestented with neurological symptoms instead of the expected rheumatoid symptoms. The doctors went through a lot of possibilities, including MS, before landing on the right diagnosis.

[idnib]

You are absolutely not being overly dramatic, really.

 

Sending hugs and good thoughts.

 

:grouphug:

[creekland]

I think I'm finding I don't do worry very well....  

 

...

 

Thank you so much again. I'm really sorry for being so dramatic, I just don't really want to say things out loud around here, kwim?

 

FWIW, everyone I know IRL who has dealt with a serious issue (whether with answers or without) agrees with me that the mental part is often worse than the physical.  It's something others really have a tough time comprehending TBH.  We only talk about that with each other for that reason.  They get it.  Others might try, but I've become convinced it's really a BTDT thing.

 

When someone "new" gets the bad news (or bad symptoms) one of us will fill them in (and include them in our inner circle group).  It helps them realize they aren't alone and gives them someone they can talk with when needed.  We all take our turns as our minds need to.

 

Just sharing our experiences.

[Peaceful Isle]

Praying and thinking of you this morning. â¤ï¸

[cintinative]

Maybe you explained this, but they found no lesions on your spine either?  Because some of the symptoms you are describing fit Transverse Myelitis (which is like MS, but not MS).  The numbness especially.  However to have Transverse Myelitis they need to see inflammation on the spinal column.  This site is helpful:  https://myelitis.org/living-with-myelitis/disease-information/

 

 

 

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
 

 

[Twigs]

:grouphug:  :grouphug:  :grouphug:

[Donna]

:grouphug: