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AngieW in Texas

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Everything posted by AngieW in Texas

  1. Her new doctor (the MS specialist) is a neurologist. We were able to connect with other MOG patients through a facebook forum and found several that go to see him in particular.
  2. I had not realized that I didn't update here. We saw the MS specialist two weeks ago. It is MOG antibody transverse myelitis. The lesion on her spinal cord is in her neck and is 7 cm long. The new neurologist did not know that the original neurologist had completely blown us off and done no imaging and no medication. He was astounded that nobody before him had put her on any medication or done anything for her at all. He put her on a one-week course of high dose oral steroids which has helped to reduce symptoms. She will go back to see him in three more weeks. A complication for treatment is her extremely strong vasovagal response. In order for her to have an IV, she has to be unconscious. If she is conscious, she will convulse for the entire time that the IV is in. They tried to give her an IV in the ER and then took it back out again after 5 minutes of convulsions. The most common treatments for MOG are through IV. What the doctor discussed was putting her on CellCept, since that is an oral medication. He wanted to see what the high dose steroid would do first. He does not like long-term steroids because of the damage they cause.
  3. Keep pushing. Go see a different neurologist who has better reviews. It may take a while to get in to see another neurologist, so get an appointment scheduled as soon as you can. My daughter finally got a diagnosis five months after our visit to the emergency room. If that first incompetent, arrogant neurologist had actually ordered an MRI instead of blowing us off, he would have known that she was not making anything up or exaggerating anything. Instead, he insisted that it was carpal tunnel and rushed us out of his office as fast as he could. After that we went to an orthopedist who referred us to a physical therapist who said that we needed to go to a different neurologist. The new neurologist actually did order an MRI and then bloodwork and now my daughter is seeing an MS specialist (not MS, but causes similar symptoms and is more difficult to treat). She is finally getting treatment and it is actually helping. She is recovering some of the coordination that she lost and has less stiffness in her hands.
  4. All of our primary care doctors are nurse practitioners. The only medical professionals we go to who are not nurse practitioners are the plastic surgeon who did a fantastic job on my 21yo this summer (and now they are pain-free for the first time in SIX YEARS!), the ENT who also worked on my 21yo and will be doing so again this winter, and the neurologist for my 23yo. Our primary care physicians are all nurse practitioners and the psychiatrists that my oldest and youngest go to are nurse practitioners.
  5. In that context, I would hope that everybody would see it as God's love including LGBT. I am one of the GSA sponsors at the school where I teach and my students often suffer horrible discrimination in their families and at their churches. Any time they see any kind of olive branch extended to them, it helps.
  6. We have a whiteboard calendar where all the kids post their schedules. There are four of us using three cars. We have to plan around each other's schedules to make sure that everybody can get to and from work and school (21yo is in college). Each of us has a color and we put our work times on the board in our appropriate colors. I have virtually the same schedule every week (school teacher), so I only put my schedule on the board when it is different. My kids all have different schedules every week, so they put everything on the board. As far as the illegal activity goes, your adult son needs to understand that just taking somebody to where they do something illegal can open up a horrible can of legal worms for him. He can end up with greater consequences than his little brother even if he did not participate at all because he is a legal adult.
  7. More than 10 years ago, I would have said Lisa Frank. Now I automatically go to LGBT with rainbows.
  8. Suggestions from my own journey with my 23yo to get her diagnosed properly: 1. Get an MRI for sure. Nobody was taking her seriously because she wasn't in pain and didn't have muscle weakness. They could see that her coordination seemed to be off and she reported reduced sensation, but that wasn't something they could see. Once the MRI showed inflammation in her spinal cord, they finally took her seriously. Initial visit to ER was in early February, first MRI was in June. 2. Get bloodwork done. The second thing that made her be taken seriously was bloodwork results. This was the bloodwork that was ordered based on her spinal cord being inflamed: copper, zinc, vitamin D, MOG, AQP4+. A positive MOG result pushed things further and more bloodwork and more MRIs were ordered and she was transferred to an MS specialist. It has taken 5.5 months to get to the point where we are now. We will finally see the MS specialist that she was transferred to in two more days. We went to the ER the first week of February, saw the neurologist they referred us to the next morning (blew us off and said it was carpal tunnel from too many video games), went to family doctor and got referral to orthopedist, orthopedist referred to physical therapist, physical therapist tried a bunch of stuff and said to try another neurologist, back to family doctor for referral to a DIFFERENT neurologist who wasn't so full of himself, finally got in to see that neurologist and then the wait to get insurance to approve MRI and then the wait to get it actually scheduled, then more blood work and more MRIs and the neurologist that she was seeing transferred her to an MS specialist because it was outside her wheelhouse. MOG was only discovered about 15 years ago and is treated by MS specialists because it is also a demyelinating autoimmune disease. People with MS who have not responded well to standard MS treatments are recommended to be tested for AQP4+ and MOG to see if they were misdiagnosed.
  9. There are four in-n-out burgers in the Austin area. I have one just 10 minutes from my house. I've never been though. The reason only that one location showed up for you when you did the search is that it was looking for Texas as either a city name or a street name. You can't actually search by state. The one in Killeen is on Central Texas Expressway, so it has Texas in the streetname. It looks like Dallas, Ft Worth, Austin, and San Antonio each have several locations. The closest location to Houston is in Austin.
  10. I pulled the sofa about 2 inches further from the wall and now the Aiper can run behind it and get all the dog hair that collects behind it. The biggest thing for me is that it can clean around and under all the things that have to be used when I am using a vacuum. The chairs at the kitchen table don't matter because it can fit between the legs of the chairs. It can go under the coffee table and the end tables. It can go behind the sofa. And it picks up what seems like a crazy amount of dirt every time I run it. If I was getting that much every 2-3 days, that would seem right, but the fact that it's picking up as much as it is when i'm running it twice per day just lets me know how much dirt we had on the floor on a constant basis.
  11. Once I start it, it runs for 2.5-3 hours before returning to the charging base. The noise isn't a problem. I have three dogs. There's always noise. It's much quieter than the dishwasher, the washing machine, and the clothes dryer even when I'm in the same room with it and those are running in another room. I like that it does a pretty thorough job. And the fact that it is ending up with so much in its bin each time it runs tells me that it needs to run that much. Yes, I could do it faster, but I won't. It really needs to be done at least 3x/week to keep up with the dog fur and the dirt. There's enough to do elsewhere in the house that I'd rather focus on those things than what we can shove off onto this. Right now it needs to run 2x/day Since it returns to its charging base automatically, I don't have to babysit it. I wouldn't have spent the money for a Roomba. Those are way out of my price league. But the cost for this wasn't bad at all. Maybe after it has been running 2x/day for a while, I will be able to drop it to 1x/day, but with the amount of dirt and fur coming off of my dogs, I doubt it. Vacuuming by hand still has to happen upstairs and I don't think this vacuum has the power to handle that well enough, especially since it is broken up into all the separate bedrooms. But for my predominantly tile floor downstairs that has limited area rugs, it is great.
  12. We have three large dogs and a backyard that has a significant dirt area, so my downstairs was a mess all the time. I got an Aiper ( https://smile.amazon.com/gp/product/B07KS1TNC3/ref=ppx_yo_dt_b_asin_title_o00_s00?ie=UTF8&psc=1 ) on Friday and I love it so far. It runs for about 3 hours at a time and it can find its recharging station on its own. Since I do have three dogs, I am needing to run it 2x/day in order to keep up with what they bring in. It has a pretty large dust bin and it picks up at least 1/4 - 1/2 cup of dust/dirt and 1 cup of dog hair every time I run it. It hasn't had any problem going from the tile floor to the area rug and back again. The area that I have it cleaning is pretty large: living room, dining area, kitchen, eating area, hallway, and laundry room, probably 1000-1200 square feet. The dogs have paid very little attention to it. I start it in the morning from my phone before I even leave my bedroom. I make sure to empty its bin later in the day. I start it again when I get home from work and make sure to empty its bin before I go to bed. I needed something else for downstairs because the little stick vac just wasn't doing what I needed it to do. I didn't want to buy another full-sized vacuum like the one I have upstairs and I didn't want to have to carry the vacuum up and down the stairs. Since this was just $150, I figured it was worth a shot.
  13. I have found plenty of jobs to apply for on LinkedIn, GlassDoor, and Indeed. I am also on Monster. But I've applied to >70 jobs since May and haven't had an interview. It's getting discouraging. I have been consulting with the career center at the school I graduated from and we fixed up my resume and my LinkedIn and GlassDoor profiles. It's getting pretty discouraging. Teachers report back to work on August 8th and if I haven't found another position by then, I will be stuck in the classroom for another year.
  14. I have an appointment with my doctor on Monday afternoon. I'm pretty sure that what's going on is uterine prolapse. Is there anything you recommend doing while I wait for the appointment? I've been doing kegels and making sure to pull up and in when using the bathroom. That has helped.
  15. It seems weird to even think about having a curfew with legal adults who have completed high school unless you know they have a substance abuse problem and that is a condition for being able to remain in the home. All three of my adult children are living in my home. There are four of us and only three cars. We have a whiteboard calendar where the kids all write down when their classes and work shifts are. We have to coordinate who is going to have which car and when. I always have the same hours, but the kids generally have different schedules each week. If I pick up tutoring as an additional job to supplement my teaching pay, then I will add my tutoring schedule to the board also because that would change each week.
  16. That is interesting considering that my 21yo was diagnosed with hypermobile Ehlers-Danlos 4 years ago. EDS is always what I think of first when anything happens because it can cause such a wide variety of symptoms. She did test positive for the MOG antibody though and everywhere that I have found mention of EDS and MOG, it has said that you don't have MOG antibody with EDS. I will be at her appointment with this new neurologist in three weeks and will definitely be mentioning EDS.
  17. I would expect Chiari malformation to show up in the cervical MRI or the brain MRI. I will definitely ask the neurologist about it when we see him in three weeks.
  18. No formaldehyde exposure that I know of. She did have an upper respiratory infection the week before symptoms started and I know that can sometimes cause transverse myelitis (although 60% of the time they can't find any kind of cause).
  19. My dd did get in to see another neurologist mid-May, who ordered MRIs of the brain and neck. Of course it took insurance two weeks to approve getting the MRIs done and then another week to get them scheduled. There was visible inflammation of the spinal cord in the neck, so the neurologist ordered some bloodwork and more MRIs. Insurance sat on those MRI orders for two weeks before approving them and then when we scheduled them, the closest appointment was another two weeks out. Meanwhile, the bloodwork came back and she was positive for MOG antibody, so she has been transferred to the neurologist who specializes in MS and MS-like diseases. So she has the additional MRIs (to look at the rest of her spine) next week and has the appointment with the new neurologist in three weeks. The neurologist's office called yesterday and said to start taking 5000 IU of vitamin D daily because vitamin D was low (and low levels correlate with recurrent attacks although we don't know if low levels are causative). The neurologist also ordered more bloodwork which we will do tomorrow since they called at 5pm yesterday and today is a holiday. Interestingly, when I asked if there was anything that she should absolutely avoid, the nurse said that she should absolutely not take echinacea. All of this started all the way back in February. She has definitely lost some functionality in her hands and arms. Her handwriting and her coordination isn't as good as it was. And it was never very great. She did multiple sessions of OT as a young child and we finally determined that we had gotten her fine motor skills as far along as they were ever going to get. I have always had to add cord stops to drawstrings for her because she couldn't tie a bow and carefully choose things that had buttons to make sure that she could actually work them. She always had legible (not great, but legible) handwriting. Her handwriting is much worse now. Typing is more difficult for her now too. She keeps hitting the wrong keys and has to go back and fix what she typed. I don't think that she will be able to return to her job. They made her go on medical leave three weeks ago because she couldn't perform all of her job functions and they couldn't accommodate her any longer without a work capacity form from the doctor showing what she could not do and for how long she would be unable to do that. So far, no doctor has been willing to fill out the form because they didn't have any kind of diagnosis and so they don't know how long she will be unable to perform these tasks.
  20. I'm looking for any information I can find about MOG antibody disease. My dd's first MRI was two weeks ago and after seeing the inflammation on the spinal cord, the neurologist order more MRIs (will happen next week) and some bloodwork. The bloodwork showed that she tested postive for MOG antibody, so she has been transferred to the neurologist who specializes in MS and MS-like diseases. The appointment with the new neurologist will be in three weeks. In the meantime, she has one more bloodwork test to go get on Friday (they just told us about it today at 5pm) and she has been told to start taking vitamin D daily since that was low. This is the site with the best information I could find: https://myelitis.org/wp-content/uploads/2018/08/2018_MOG_F.pdf There's a lot of information out there about MS, but not so much about this. We don't have a definitive diagnosis yet either. I know that false positives do occur with MOG. I've requested to join a facegroup book for MOG, but that was just a few minutes ago, so I expect that to take a while.
  21. My youngest ended up with a double transfer. Adelphi was not the school they had presented themselves as. East knew by the end of fall semester that they would not be returning the next year. Their plan was to transfer to a Canadian university and they did get in to University of Regina with enough aid to make it affordable, but that ended up not working out for medical reasons. So they ended up being at home for a full year. They had applied to UT (close enough to commute to) but did not get accepted. They ended up going to the cc this past year instead and completed an associate's degree and applied to Southwestern for next year. That school is very expensive, but is known for fantastic merit aid. It is also close enough to commute and is known for being great for LGBT (very much unlike Adelphi which talked the talk but didn't walk it). They got accepted to Southwestern with a great scholarship that cuts the cost down to 40% of the list price and will be starting there in August. I do worry about the cost going up each year, but part of the divorce decree is that my STBXH will be paying for the entire cost of college, so that isn't actually my worry. Southwestern doesn't front load their scholarships, but they also don't increase them. I think front loading scholarships is a pretty evil thing to do, especially knowing that the cost usually goes up every year. It hasn't been an easy journey. They will be graduating much later than they had planned, especially since they are also changing their major (but I think it's a really good change). They spent one year at Adelphi, then one year home, then one year at cc, and now will need three years to finish up at Southwestern. So it will be a 6 year journey to finish the BS by the time they are done. It is what it is.
  22. One thing to be aware of is that getting into grad school for SLP is VERY difficult. There are many more applicants than there is space for due to the need to have clinical hours. Also, many grad school programs appear to prefer students who went to undergrad in a different state.
  23. I recommend calculus-based. If she has the math for it, it will be easier than algebra-based. With calculus, all of the equations make sense because you can derive them. With algebra, you have to memorize.
  24. Both of my older girls went to UT Dallas. My oldest went for 2.5 years and then decided that she was done with college. She did a reverse transfer to community college and is actually finishing up the last class she needs for an AS degree this summer after a very long break. My youngest just got her AS degree in May, so that prompted her to finally go back and take the last class she needed to graduate. My middle dd completed her BS in Speech Pathology and Early Childhood Learning and Development at UT Dallas. I thought UT Dallas was awesome. My oldest had to withdraw from school one week into her 2nd semester due to medical issues and they held her scholarship for her so she still had it when she returned the next semester. The dorms there are fantastic. My middle dd was in the dorms the entire time she was there and loved it. The dorms are very quiet. My oldest was in an on-campus apartment and loved it. The apartments were really quiet too.
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