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mommytobees

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Posts posted by mommytobees

  1. NOT HAPPY!!

     

    O-bands are only present in a small percentage of people with MS. I don't have time right now to find you the studies.

     

    HOWEVER, an elevated albumin level IS a marker of MS, as well as neurosyphilis, a couple encephalitis (es) (how do you plural that word?!!), and something else equally nasty that I can't remember.

     

    Your Uni spec Neuro isn't releasing you, is he? He isn't THAT short-minded, is he?!?!?! 

     

    Kris

    • Like 6
  2. ::delurking::

     

    So, I don't have enough time this morning to read all of the responses, but I did read your two responses to other.

     

    First, {{{{{{{hugs}}}}}}} You need to take a deep breath. Relax, even if it is just for a few moments. Be gentle with yourself. If I came on here and gave a similar post, what would your advice to me be? Breath.

     

    Second, while I think exercise is very important for our bodies, I think sleep is equally important. Now, I don't know where you are, but pack the kids up and take them someplace where you can ALL walk. You don't have to choose between sleep and exercise...you can just make the kids go for a walk with you. Rather than focus on giving up something, adapt.

     

    Third, depression is insidious. It is one of those nasty summer colds that sneak up on you and then smack you when you least expect it. Every year on March 1st, I turn into a raving lunatic (okay, that might be me being hyperbolic, but I'm Not Nice). I am Not Nice for exactly 11 days and then on March 12....I'm normal. It sucks. It is a full on light switch. Last week, my son even mentioned to my mom that we could do something or another....why? Because it falls between 1 Mar and 11 Mar. Why? Because on 11 Mar 11 I lived in Japan. We are coming up on the 6th anniversary and this will be the 5th time I've gotten really cranky. Knowing it is coming....I try to dampen my emotions and my responses. I issue a self-regulation that I must breathe 2 breaths before responding to anyone.....but that didn't stop me from chewing the head off the poor mechanic last year. Poor dude. He's still scared of me.

     

    What does this mean? This means that you know you are under stress right now as your date gets closer. But, this probably means something else too. Have you considered talking to someone? I highly doubt you need medication...you mentioned that earlier. I think this sounds a whole lot more like you have some problems to work out and resolve within yourself. Maybe see if you can find yourself an MFT, an LCSW/ MSW, or even an LPC in your area. Go in and tell that person what you've said to us.

     

    You aren't the person you want to be.

    I don't think I'm depressed, but I feel hopeless.

    I'm unhappy and unsatisfied.

    I don't enjoy something I used to love. (church)

    I don't think I'm a nice person.

     

    {{{{{{{{{{hugs}}}}}}}}}}}}} I think the fact that you are upset and unhappy about this shows that you *are* unhappy and probably depressed. It happens so slowly sometimes that we just don't see it.

     

    A few months ago, my daughter's (15yo) therapist (who she sees because of a nasty divorce) looked at me as we were leaving her office and said, "So, how are you doing with all of this?" And.... I started crying. Turns out, without realizing it, _I_ had slowly become more and more withdrawn and depressed. She saw it, because she saw me every week with dd. I didn't see it, because i was too busy living day-to-day and dealing with dd's steadily worsening illness. My friends missed it because they were too close and really didn't know what to look for. I've been seeing her for several months now and that's a good thing for me and for my kids. _I_ am having a hard time and consequently, I'm not a nice person. I'll admit to something hugely embarrassing to me..... on Sat morning I cursed at my daughter and ripped her a new one. Now, she deserved the scolding, having done something I find highly inappropriate, but I've never cursed _at_ her before. I apologized later for cursing at her; that was uncalled for. 

     

    {{{{{{{{{{{{hugs}}}}}}}}}}}}} Be gentle with yourself. You are a good person, otherwise you wouldn't be questioning yourself. 

     

    Kris

     

    • Like 3
  3.   It's SO HARD to ask for food.  And it shouldn't be something that people need like this. 

     

     

     

     

     I know I'm coming into this late, but I wanted to agree with this statement.

     

    It is HARD to ask for food, but it's one of those "help" buttons that you will ask for.

     

    Kris

    • Like 2
  4. He did the entire 45 minute MRI with contrast with NO sedation! What a big boy he's becoming! They put the IV in for contrast and anticipating sedation, but he was surprisingly content to watch the movie they put on for him, they let him keep his Ender Dragon stuffed toy, let me hold his foot, and he was perfect the whole time. It didn't hurt that they made the experience nothing short of actual fun for him (child life specialist brought in her dog, he played Wii while waiting, MD and nurses came out and talked to him first, etc.). 

     

    I'm waiting and watching his online chart like a hawk. I'm pretty hopeful and confident that it's nothing, but... yeah. Still nervous. 

     

    The fact that they sent you home makes me a bit relieved.

     

    I'd be watching that online chart too. 

     

    Kris

    • Like 1
  5. Yeah I am probably going to look to have the rest of the work done elsewhere.  I just don't want to start over, but I feel like this is pretty careless on their part.

     

    I don't think it was careless. I think it was negligent. 

     

    Let's change this a bit: rather than a cyst, you got a cut and a nasty infection? (it's within the realm of possibility).

     

    This infection became bad and went to your blood.

     

    Just because you had a rather "inconvenient" problem from this negligence doesn't change the fact that it was a serious error. I wouldn't file a complaint or even sue them, but I wouldn't go back.

     

    I have low tolerance for medical incompetence. Mistakes happen, we are all human. But they NEVER EVER should have left you alone. That act was negligent.

     

    Kris

  6. Any clue what this is from?

     

    I think this happened because they left the suction instrument hanging in my mouth for too long.  The assistant literally just left it in there and left the room for quite some time.  I was with it enough to realize this, but I couldn't communicate that it was hurting.  And of course they could always claim I was too out of it.  I showed it to them at the follow up and the dentist figured it WAS an injury during the procedure, but she claimed I must have bitten that spot.  It's impossible.  There is no way my teeth could reach that spot no matter how I move my mouth or distort my face.

     

    I think mine are related to autoimmune conditions (be it lupus or Sjogren's). I get them when my Lupus gets really bad (which has happened twice).

     

    My daughter.....not sure. One of hers, and the worst one she's had, was because she kept chewing on it (there was no pain). They think she must have injured the spot. This was the only one that they cut and biopsied. (both medically covered but done by the dentist) The others were in various spots of her mouth, but she couldn't chew them. 1 was left alone and she has a scar from that one. The other 2 were drained and she was given steroids. 

     

    Dentist did some research and thinks it might also be autoimmune related, but we really aren't sure. Now, she does have some sort of autoimmune condition, but we don't have a formal diagnosis yet. (suspected MS)

     

    Why did you get it?

     

    My guess would be that you had an injury (check) and possibly have a naturally occurring bacteria in your mouth that is making it worse, which is why it keeps coming back. I wouldn't step foot back in that dentist's office!! Oral infections can be weird. 

     

    Kris

    • Like 1
  7. Based on what I read they often try draining it first.  I did it three times now.  I know, way TMI...way way.  But it just keeps coming back.  And I've been extremely careful about using sterilized everything, but gee I don't want to get some sort of infection either. 

     

    It's weird.  It does not hurt.  It's just fracking annoying.  I want it gone. 

     

    Okay, is this in your teeth (root area, socket, ??) area or in your lingual (tongue) / cheek area?

     

    Does it need to be drained and then a heavy dose of abx to follow?

     

    See, I'd be seeing my dentist for it, but my current dentist is a jack-of-all-trades kind of guy. 

     

    If you have a name for your problem, call around and see if X doctor will remove it. "Hi, I'm pretty sure I have a "thing-a-ma-bopper", is that something that your ENT/ Dentistry/ Oral Surgery office will take care of." If the person you are talking to doesn't know, ask to talk to the office manager and then he/she will talk to the doctor about the problem.

     

    Good luck!

    Kris

  8. No.  I have to have spinals for my cerclages and I have had an epidural a few times - so Ive had a lumbar puncture in one form or another over a dozen times.  

     

    ;)

     

    I knew that I would know what he was thinking based on the tests he ordered.  If he ordered a new MRI or LP, then he is wanting to confirm MS.  If he is ordering an EMG again, he is looking for fasciculation confirmation and ALS or MND is higher on the list, kwim?  I was relieved it was the LP.   :)

     

    You and I both!!!

     

    Do be warned, you aren't guaranteed an answer with the LP. My daughter's keep coming back clean and I'm starting to get peeved. She doesn't quite fit the McDonald criteria. My son, however, had more than 15 o-bands in the CSF.

     

    {{{hugs}}}

     

     

    Oh, also! You need to get a CD copy of all of your images!

     

    Kris

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    • Like 1
  9. I think you have a plan! You have an idea on the student loan numbers...it isn't my job to approve or not, I just wanted you to know to think about it! (you wouldn't believe the number of people I talk to who don't before starting!)

     

    {{{hugs}}} 

     

    Not that you asked, but do you have listening or attention lectures? (again, you don't have to answer!) My son has MS and he just started community college. They have a voice-recording pen...only more. Hard to describe... check this out: https://www.livescribe.com/en-us/smartpen/echo/ 

     

    Anyway, they aren't very expensive and I think they might be of benefit. 

     

    Kris

    • Like 2
  10. Not a nurse (and never, ever ever want to be!!! Yucky!!!) but know many nurses, a couple with their own host of mental health problems.

     

    First, how are you going to pay for it? You are banking a lot on being successful IF you are considering getting a BSN.

     

    Second, what is the acceptance rate at the school you are applying to?

     

    Third, don't count anything out with a BSN. What do I mean: I mean that if you want a hospital job, yes you are likely to work nights, which I don't know would be best for you. HOWEVER, depending on the population you want to work in, working at a hospital might not be in your best interest.

     

    Between now and when you graduate: decide what population you want to work in. Geriatrics, then go for it 'cause there are always nursing home jobs open. The work will suck and I mean that in the poopy-your-employer-and-most-parts-of-the-job-will-suck way. BUT, you will get experience quickly and move into something else with your NP certification. You have lots of areas to choose from: geriatrics, mental health, ped's, women's clinic, or ???? look around and consider for yourself.

     

    Having said that....if this is what you want to do, make a plan and take action. You CAN do it if you choose to make it a priority. Just because the "normal" path includes sleep deprivation, doesn't mean you have to be normal. 

     

    Kris

    • Like 1
  11. WOOT!!!!!!!

     

    I know that MS isn't something to be happy to have.....but...... if you have MS WOOOOTTT!!!

     

    As for the EMG, it's not a typically ordered test in part because it isn't conclusive if you do not have lesions in that area of your spine. Even if you have leg involvement.

     

    LP makes perfect sense.

     

    My daughter has had 2 in the past 3 months. Are you worried about the procedure? 

     

    {{{{{{{{HUGS}}}}}}}}}}

     

    Kris

    • Like 1
  12. {{{{{{{{hugs}}}}}}}}}} My son gets MS hugs and they SUCK!!! There is a medication that you can take that will help it, but I don't remember what it is (and am not somewhere where I can look).

     

    I'm sure I've said this before, but when my son was dx'ed with MS I was relieved. MS SUCKS! There is no doubt about it. But, there are things that are much worse than MS.

     

    Kris

    • Like 2
  13. 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

  14. 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

    • Like 4
  15. 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
  16. 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
  17. 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

     

     

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