mommytobees
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Posts posted by mommytobees
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I am sorry you are goi g thru this. MRI quickly , lets just view that as a good thing. Get the test over with and you will have some answers.
Contrast in my case with ct scans means I had to drink something. I assume it is a more detailed scan then.
Hugs
This contrast will be injected right into the vein.
Kris
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So the appointment wasn't rockstar.
Longer appointment this AM - got to ask a lot of questions. She doesn't think this is ALS at all. That was a relief.
I failed my drunk test. Walked heel to toe and couldn't keep balance. That was somewhat upsetting. I had not realized my balance was off.
Is that normal MS?
She did something to the bottom of my foot and it spasmed/tremored. Does anyone know what that was that she did? She repeated it again immediately, then came back five minutes later and repeated it again. Each time it went into a series of spasms. All on the right side.
I could feel cold everywhere and pain. I had no problems with sensation on my back.
I felt pretty good leaving. She said she felt MS is a possibility and would like an MRI.
I felt less good when they called a few hours later and had it scheduled for Friday morning. That can't possibly be typical? I'm grateful, don't get me wrong, but it is a little creepy that my appointment was this morning and I have an MRI for Friday and I was told a few weeks ago it can take up to a month to get into an MRI.
The MRI will be both with and without contrast if that means anything to anyone and will be of my entire spine. I suspect that she suspects this is Primary MS. Sigh. I think God thinks I can handle more than I think I can handle. Just sayin'.
As someone else said, I think your foot thing was the Babinski Reflex. If you have an abnormal Babinski, I'm not surprised that she kept checking it. THAT is weird and not good.
Check this out (normal and abnormal and how to do it):
This is in a baby, which is different than in adults:
Have your husband repeat it and see if you respond funny again. My son is absent deep tendon reflexes in the knee and ankle on his right (I think) leg....it's fun to play with it.
Gait examples: http://library.med.utah.edu/neurologicexam/html/gait_normal.html
As for the MR, I'm not surprised. I might have been a bit surprised if you said they admitted you through the ED to do it ASAP, but not that they told them they want it this week.
Good that they are doing contrast. AND, really really good that they are doing the spine. That isn't always a given. If you are interested in understanding what you might be reading, check this page out: http://www.radiologyassistant.nl/en/p4556dea65db62/multiple-sclerosis.html
Now having said all that... did she say Primary in the conversation? I wouldn't be concerned that you have Primary Progressive MS, but you know what your body has been going through. National MS Society has a good explanation of the types of MS:
http://www.nationalmssociety.org/What-is-MS/Types-of-MS
Familiarize yourself with the McDonald Criteria. http://www.nationalmssociety.org/For-Professionals/Clinical-Care/Diagnosing-MS/Diagnosing-Criteria
Final thought:
When you go in on Friday, ASK if you can have a copy of the images TODAY while you are there. The worst thing they will say is NO. It will not include the radiologist report, so keep that in mind IF you decide to look at the images.
{{{hugs}}} If you need anything at all, I'm Kris Desh (Totoro face avatar) on Facebook.
Kris
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You want to kill grandma! You hate old people! You want death panels!
(sarcasm here... I agree this is a real problem but I don't see it addressed any time soon, since even a brief mention brings the previous reaction.)
CHOKE
SNORT
I was drinking OJ....do you know how painful OJ is through the nose?!?!
Kris
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If you decide that the dry doesn't work, I'd get a cat tree at feed them at the top.
Good luck!
Kris
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Thanks Jenn - that's a really good idea. I think I'll do that. I'm just really curious if anyone presented with hyper reflexes and drop foot but *without* pain. I appreciate your input.
So, oddly, what I have is apparently hyperreflexia - my reflexes on my right side are *super* exaggerated. It's the oddest thing. Both of your kiddos have MS? I'm sorry that sucks. :( Yeah, I know there are a few things that can cause drop foot. Essentially the only words I'd like to definitively hear are, "This is definitely not ALS." And I doubt it is- I'm young, I'm a woman, it's fairly rare, blah, blah, blah. I was feling pretty panic-y yesterday and the anxiety is much less reduced today, thank God. (Literally.)
Oh ya! I understand that one!
When they (the masses of doctors) told me they were going to test for neurosyphilis, I shrugged. THAT I wasn't worried about for either of my children as a) they aren't sexually active and b) I _KNOW_ I didn't miss syphilis in my past. But, when they were testing for parasites (in the brain) and CNS Lymphoma, I was _MORE_ than a little perturbed. I wanted to know that there were no cancer cells found in the CSF. So, when ds18's CSF came back with O-bands, I shrugged and while I was a bit surprised, I wasn't upset. DD15's CSF was just taken today, so we'll see what it says.
Ya, having two kids with MS bites. How the heck did that happen?
Kris
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She only came in to check reflexes before the EMG - it was not our first official appointment. Apparently due to insurance, your first appointment gets you X amount of time and subsequent appointments are considered follow-ups and get a lesser amount.
Because of this, she didn't want the EMG to be our first appointment but rather see me in office next Thursday instead. She said she felt, after checking reflexes, that the EMG would be a waste of our time barking up the wrong tree and, as long as I didn't mind (the EMG was ordered by my family doctor) that she would rather spend the time with me in the office and schedule an MRIfor head/neck imaging.
Honestly it freaked me out. Who shows up to an EMG, has a neuro check their reflexes and say, "Nope, not this. Let's skip ahead and see you next week and we'll get an MRI scheduled." There's nothing about that that screams, "Hey, you're just imagining this and all is well." KWIM?
EeeeeeeR!!!!!!!!!! I wouldn't be agreeing to the EMG without the brain or spinal MR anyway! I'm glad that your Neuro said, "no" to the EMG.
Having said that, you need the MR if you are having foot drop. MS is not the only thing that would cause foot drop, there are several different things that would.
As for the reflexes, ya, that can happen in MS. Last year, when my ds18 was dx'ed with MS, he had zero right knee and ankle reflexes. Last week, when my dd15 was in the hospital and also dx'ed with MS, her left knee had limited reflexes.
I'd want the MR images before going to an EMG. EMG _hurts_.
Kris
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I have to share my frustrations with health insurance right this minute.
My children are both on a government run, socialized medical system as the dependents of an active duty military member. They have been for their entire lives and I was most of my adult life before my divorce. There are advantages and disadvantages. They are on the HMO variety run by UHC.
My daughter has been very sick, but not quite acute over the past several weeks. With a series of ups and downs...
4 weeks ago: PCM (a NurseP) at the AFB Ped's clinic appt.
3 weeks ago: MRI at AFB, the most horrible machine that gave awful results and just enough detail to scare the crap out of me.
Thursday: Worsening symptoms, instructed to take her to the local children's hospital. She was admitted.
Friday: Did a new MR and the images were horrifying. DX w/ MS at 15yo. (my 18yo was dx'ed with MS last year) Failed LP (lumbar puncture). But, there is something else wrong....lots of labs.
~ Released Friday with instructions to get an LP under sedation within a week (underlying threat of readmission).
Monday: Children's hospital schedules the LP for Thursday and submits the authorization request
Tuesday: Children's hospital calls me to say: Insurance refuses to pay for LP because it wasn't submitted by the PCM
Okay, let's think about this for a minute: A ped's neurologist failed in an inpatient LP and SENT HER HOME to a) make the teen happy, b) save money; because she was not acute. Why keep her inpatient JUST for diagnostic testing? No, save money and send her home.
But, UHC is playing games and refusing a procedure that needs to be done. Thankfully, her PCM's office is tired of this and are having none of it. A NP isn't going to order an LP that a Neuro wants. The Neuro wants it and must justify it. They are trying to take care of it early enough tomorrow that she'll resolve it and we can do the outpatient procedure. This is all about money, whatever they can get out of having to pay for.
If we take the health insurance company out of the equation, the socialized medicine works. (Sorry to suddenly deviate from the point of the original post.) I know people are worried about rationed healthcare, but we already have rationed healthcare. Procedures like my daughter's LP and her MR aren't going to be rationed... they were considered urgent given her age...just ones that don't require hospitalizations after the initial evaluation to make sure she wasn't decompensating.
Anyway, I'm exhausted and babbling and going to bed.
Kris
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Did you check 2017 rates and premiums? Subsidies are going up. I can't imagine you wouldn't qualify as a single person"...and don't forget you can count your child as a dependent if they are still,in school.
Yup....that is with the one dependent. I'll look again.
I"m just so annoyed.
Kris
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Unless you qualify for a subsidy shopping on the marketplace does not benefit you. One year I didn't qualify for a subsidy and just bought my policy through BCBS. Being tied up with the marketplace is a pain. I wouldn't do it unless I get a big subsidy.
Who do you use now?
Honestly, even if you qualify for a subsidy it often doesn't help. Right now, thankfully, I qualify for Medicaid because my spousal support is so low and I have one child dependent still.
But.....I adjusted things, just to see, and without the kid, I'd receive $347 a month in subsidy and the low-end plan was "only" $1200 a month with a $10,000 deductible.
Ya. 'cause I can afford that! That's just about 1/2 of my child and spousal support payments.
Kris
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I agree, though supposedly, it's quite rare to be diagnosed, but not necessarily quite rare to have it. They think it's more like 1% of the population, which means it's still rare, but not insanely so.
Good way to put that!
My son and I both have EDS and never would have known except my dd has it so bad that she developed fibro.
Kris
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My dd has had some PT after her diagnosis, but I am not sure how much of it is specifically for the EDS. In fact the therapist just kept giving her exercises for her core. No exercises to strengthen the muscles around the joints or to stabilize the joints. He said "first things first." I am not a physical therapist, so that is what she is doing. She is away at college and finds it difficult to find the time & energy to do her PT daily and as an adult (19) all I can do is encourage & try to sympathize.
On a side note. During each of my deliveries I would dislocate one or both of my hips. The doctors & nurses would all comment on it, but no one ever said anything to me like, "That doesn't usually happen during delivery. You should get that looked at." I had no idea it could be a symptom of something else. I just thought it was a weird thing my body did during childbirth.
Amber in SJ
Most doctors do not know about EDS. My daughter was admitted to a children's hospital on Thursday and I talked to dozens of doctors and residents, only one knew what EDS was and that was because she had it... at one point, I was ask about it by a hospitalist attending in front of his babies (residents). I answered his question and then asked if he had heard of it; he answered, "5 minutes ago..." So he asked his residents questions and then I asked them all questions and then I scratched the middle of my back by bending my arm up my back (if that doesn't make sense, run your hand up your torso from your waist to your neck...I can do that, waist to nape of neck, on my back...and NOT sublux my shoulder.)
You have to plan to educate each and every doctor for the rest of your/her lives.
Ouch on the deliveries....I can sublux my hips, but they've never dislocated. My right shoulder, on the other hand, I've done 7 times. I don't even go to the ED for it anymore, takes too long. Shoulders, elbows, wrist (ouch), fingers, toes....
Kris
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Oh, one other thought....
Has your daughter done any PT for the EDS?
That has been one of the best activities for my dd.
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I don't have time to read all the posts...but Welcome to the World of Zebras!
https://www.facebook.com/groups/1610566309197733/
If you are interested in meeting other like...jointed...bodies....most of the people on the group are homeschoolers.
My dd15 has EDS, I have EDS (though self-dx'ed), my son has EDS. It's a bowl of fun. My son and I don't really have many problems with it. I used to have regular dislocations, but learned how to control that as much as possible. My daughter has Fibro as well.
Anyway, you can't simply ignore it...that's how our daughters ended up with Fibromyalgia. Okay, I didn't know. That is true, but doesn't save her from the brain-altered chronic pain. Look at your baby girl and then look at her younger sibs....you'd save them all from chronic pain if you could, right?
{{{Hugs}}}} Zebras suck!
Kris
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I don't think Baker's and photographers and florists, etc have any standing on this issue. They are selling a product.
I could see a church or religious leader refusing to perform a wedding. That makes sense.
The baker, photographer, florist etc are not part of the religious passage. There is nothing in any religion I know that says a marriage is based on cake or flowers or pictures.
To me the actions of a baker refusing to make a wedding cake are like a restaurant refusing to serve a gay couple.
I agree with this. I don't think it is appropriate to tell a Roman Catholic priest that he must marry homosexuals. This is not a public service; it is a religious service.
However, the baker is providing a public service in selling to the public their product.
Kris
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That was interesting.
I haven't approved of any of this behavior. The cake shop sells cakes, not ideals. The photographer takes pictures. Hobby Lobby sells craft supplies and should not be trying to make medical decisions for their employees.
Kris
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Yes, that's how she got the MRI before we were discharged. We don't have the results from the MRI, yet, though. I'm hoping our regular doctor can exert pressure to get those.
Okay, so I came on this morning (busy day today LOL) for this....
I have two thoughts for you.
1) MR Images
I've become a master at getting images from different places. (I hate saying that, on multiple levels.) Forget waiting for your doctor. Different hospitals have different policies at getting the discs, with or without the rad's report. Call the hospital and ask for two different things: a) I need a copy of my minor daughter's recent images and the radiologist's report accompanying them for both MY records and for the Doctor's records. What do I need to do to get these images?
Most of the time, they will tell you to have the doctor's office contact to request. One of our local hospitals are *really* bad about allowing patients to access their own stuff. But, press the issue.
If they tell you, you can have them now, come pick them up (with a wait in the waiting area). GO GET THEM. A disc in hand is of value....more value with a rad's report.
If they tell you that you must wait X amount of time and the doctor must request their own, call your Primary's office and tell them you are going to call two to three times a day until you get a verbal report of the radiologist's report. And, then follow through.
2) I'm hating this, but what were the protocols followed when they did the MR? Did they do the MR with contrast? Did she hold still? Does she have braces? You may not know the answer to the first one. You should know if she had contrast, or ask her.
I'm worried about your daughter and have been thinking about her.
Kris, who has to stop off at the Imaging Dept. of the local AFB clinic to get the rad's report from my daughter's MR from Friday. {{Hugs}} I really do understand.
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Well, good! Here's to hoping for a radiologist and neurologist both finding nothing much!
I'm praying that they can figure out what is causing it, but still want the MR to be clear.
Kris
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Am I the only one who keeps coming back to this thread.....hoping to see an update on the MRI?
Kris
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Neuro would want to see her in a month to check on her headaches. If she's still vomiting at that time they'd investigate other reasons for it (still not with MRI unless she has new symptoms). Right now they think the vomiting is related to UTI and/or migraine.
Thoughts?
I think if they release her with this, I'd make plans to be back there 48 hours after she starts the abx if she continues to vomit.
I can understand being bullied by the medical staff. It sucks.
Kris
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It's really sobering being here, though. Another child in dd's unit coded this morning.
One of the hardest parts about being in the hospital ended up being the other children on the floor. My son was in isolation, so he wasn't going out of his room until the last 5 days....and as a 17yo boy he wasn't interested in seeing the other kids anyway LOL. But, there were so many really sick kids and my kid was in the hospital for unknown origin vomiting and images on a CT of his brain.
Hospitals suck.
Kris
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{{{hugs}}} Laura, I am so sorry that you daughter's going through all of this. I pray they can get her MR sooner rather than later. My son has had more MR's at 2am than during daylight hours. Praying for her.
Kris
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It lines up with several brain stem complications, not just a tumor. Plus, there are other neuro complications that can mimic brain stem involvement.
I'd ask for both the Ped's neuro referral and the MRI or at least a CT.
Kris
We've started writing things down over the past few days. She gets a headache and double vision, vomits, and then her head and vision return to normal. Her symptoms match what I'm seeing described for brain stem tumors, which, of course, worries me quite a lot.
I'll ask for a referral to a pediatric neurologist, but I know our regular doctor can order an MRI now so that its results are ready by the time we're actually at the specialist's appointment. We did that when my 14yo started getting migraines (at age 8). MRI was normal, so we created a migraine treatment plan (at the pediatric neurologist).
Dd10's situation doesn't really fit migraine, IME. I've only had visual disturbance twice out of hundreds of migraines. I never vomit with them. My 14yo doesn't get visual disturbance, but she does feel nauseated. Neither of us has ever had a migraine last 17 days.-
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This may sound like an odd question, but have any of the doctors done a neuro exam?
Kris
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I like to call that child a Spirited child. He's full of life and spirit and you have to either contain it OR find a way to utilize it.
What is his money?
At that age, my son's money was electronics time. One task = a 15-min coin. Math + English + Reading + ______ = 1 hour of electronic time to do whatever he wanted.
My daughter's money was crafting with mommy. 1 task = 15-min-with-mommy coin.
The other idea I would focus on with him is he may need to do LESS school, but still be busy. Science experiments, special construction toys, and art can all be "busywork" for him to do during school time.
Kris
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Dog people: is there a positive way to correct this behavior?
in The Chat Board
Posted
Prong collars are effective IF used properly.... but, honestly, I don't think that's what you need here with your dog. I use a prong collar on one of my dogs and I love it. However, I don't and wouldn't use one on my other dog. This isn't about types of dogs; this is about personalities of the dogs.
I think what you are looking for is positive reenforcement.
For the next few days, having nothing to do with a walk, cut up a hot dog into tiny bites (1/4" thick round cut into 4 bites). Over the course of the day, say a word and feed him a tiny bite of hot dog. My words are: hustle and focus. You choose ONE to start with. When I say focus, my dog continues what she is doing (walking, playing, whatever) and she looks at me for direction. I've actually been training her over the past few months to respond to a noise (kind of a kissy noise with my lips) in the same manner. Hustle means: STOP and come to me. Your dog should STOP and look at you (or) should STOP and come to you.
Once you think doggie is responsive to your word, prep your hog dog into bigger bites than normal. I use full rounds about 1/4" thick. Go for your walk. Don't wait for doggie to be distracted, but use your word and reward.
Depending on how stupid/smart your dog is, keep it up.
Then, go somewhere where you KNOW you'll find a distraction that you want to control against. Word = hot dog. Which does doggie want more: prey or hot dog?
Kris