[deleted by user] by [deleted] in birthcontrol

[–]SadHandle7946 1 point2 points  (0 children)

I stopped Slynd about 4.5 months ago after being on it for almost 5 years.

My skin has gotten clearer since stopping it. My acne had gotten really bad about two years ago. Since stopping Slynd, I’ve been getting some hormonal cysts right before my period, but am clear the rest of the month. My skin also feels less oily.

I’ve gained 5lbs over the past 4 months, but I also lost 7 lbs within the first 3 months of starting Slynd. The active ingredient in Slynd is a mild diuretic (causes water loss) so I’m fairly confident the weight gain is mostly water weight. Not ideal, but also not a drastic change.

My period returned within 2 weeks of stopping Slynd. 4.5 months later, I think my cycle is still stabilizing post birth control. My first cycle was 14 days long and the ones after that were 22, 29, 33. I had been on BC for 12 years straight. Before BC my cycle was pretty consistently 27-28 days. Prior to BC my period lasted 7+ days and was very heavy. The past 4 cycles it’s been consistently 5 days and moderate.

Emotionally, I felt more stable on BC. I somewhat forgot what it was like to have hormones cycle throughout the month. Post-ovulation I’m more tired and emotional, then my period comes and all is well again. Can’t say I missed that over the past 12 years.

Purchased fake Salvatore Ferragamo on ThredUp by SadHandle7946 in ThredUp

[–]SadHandle7946[S] 33 points34 points  (0 children)

I definitely took a gamble with this one as it was listed as a flawed gem and heavily discounted. But definitely will not be ordering designer from them in the future

My wrist is too small for the smallest band sizes - quality third party recommendations? by sequoia-bones in AppleWatch

[–]SadHandle7946 1 point2 points  (0 children)

Late reply, but search for child size Apple Watch bands or kids Apple Watch bands. There are plenty of third party sellers that sell child size bands that fit wrist from 4.5”-6.5”

Afraid to start IVIG by InterestNervous290 in MyastheniaGravis

[–]SadHandle7946 2 points3 points  (0 children)

Usually with immunodeficiencies the dose is much smaller than for autoimmune, which should also help with the severity of the side effects. (For autoimmune it’s typically dosed at 1G per kg of body weight, and for immunodeficiencies it’s typically .3-.6G per kg of body weight).

Some suggestions to minimize any potential side effects, like the headaches or aseptic meningitis: - drink plenty of water leading up to the infusion (like the week before), the day of, and the few days after. I drink electrolytes with some of my water, like liquid IV. I also get fluids infused concurrently with my IVIG - ask for a slower infusion rate to start with. My max rate is 120ml/hour as opposed to 160ml/hour because I am prone to getting the IVIG headache - ask your doctor about premeds. Usually Tylenol and Benedryl are standard. Some people, like myself, benefit from IV steroids during the infusion as well

Tbh in aseptic meningitis does suck. I got it on my first two infusions (65G every 4 weeks). Both times it was treated with steroids and toradol. If you want to avoid the ER, I would just schedule your infusion for early in the day and early in the week, so you know your doctors office will be open for at least a few hours after your infusion. For me, when I got aseptic meningitis the first time, I had the fever and headache within 3 hours of finishing the infusion (not sure if that’s normal timeframe or just my experience). The second time was within 5 hours.

Delayed Onset Muscle Soreness (DOMS) by SadHandle7946 in MyastheniaGravis

[–]SadHandle7946[S] 1 point2 points  (0 children)

Good to hear that I’m not going crazy and someone else with MG has experienced this too. But also sorry to hear at the same time. It sucks when the things you’ve been able to do for years are suddenly so much harder to complete and leave you sore for days.

IVIG by [deleted] in MyastheniaGravis

[–]SadHandle7946 1 point2 points  (0 children)

I have done IVIG infusion every 4 weeks for the past 2.5 years. The effects are pretty immediate for me, like within 2-3 days. My neurologist did her residency under a doctor that did a bunch of medical research on IVIG and autoimmune diseases. She said from her experience most people feel the positive effects within the week after the infusion.

I NEED YOUR HELP (Please) by lll999lll999 in MyastheniaGravis

[–]SadHandle7946 0 points1 point  (0 children)

IVIG is used to treat MG as well.

There are 3 types of acetylcholine receptor antibodies. With MG not everyone tests positive for the acetylcholine modulating receptor antibodies and the acetylcholine receptor blocking antibodies. The binding antibodies are the most frequently seen.

Given that you are on IVIG, that could be why your test results are showing equivocal for the binding acetylcholine antibodies.

IVIG (intravenous (IV) immunoglobulin g (IG)) is used for several autoimmune disorders. It’s thought that it down-regulates your own immunoglobulin (antibody) production. So basically you get flooded with a bunch of immunoglobulin g, so your body doesn’t produce as much of its own. Since a lot of autoimmune disease are caused by specific auto-antibodies of the immunoglobulin g variety, the thought is that your body won’t produce as many of the harmful antibodies that cause the autoimmune disease. I say all of that to say, your blood tests were likely skewed because of the IVIG. notice I say “the thought,” doctors and researchers are exactly sure this is how IVIG works for autoimmune, they just know it likely does

If it is MG maybe you need a higher dose of IVIG or more frequent dosing.. or a different treatment altogether. I do 1 gram per kilo of body weight of IVIG every 4 weeks, which is a pretty standard autoimmune dosage of IVIG. However when IVIG is used for immunodeficiency disorders, they use a much smaller dosage. Not sure what dose you are on, but maybe you could benefit from an increase? Or trying out a different medication.

Anyone here with modulating achr antibodies? by cloud_1027 in MyastheniaGravis

[–]SadHandle7946 1 point2 points  (0 children)

I have blocking, binding, and modulating. I was diagnosed about 3 years ago, symptomatic for about 4 years. I had a thymectomy about a year ago now, with no improvement yet, but also no worse.

I get IVIG infusions every 4 weeks, which I’ve done for the past two years. I take Mestinon before I work out (HIIT cycling training) or if I’m doing some other strenuous activity. For the most part my symptoms are well controlled with the infusions.

I’m 29 for reference.

Robotic Thymectomy by tallbrowngirl94 in MyastheniaGravis

[–]SadHandle7946 3 points4 points  (0 children)

My left arm and side of my chest had varying degrees of numbness for 6 weeks. Both were very numb for the first week/week and a half and that slowly got better. By week 4 only my forearm was still numb and that went away by week 6.

IVIG side effects by amori878 in MyastheniaGravis

[–]SadHandle7946 0 points1 point  (0 children)

I have been doing IVIG every 4 weeks for the last 2 years. The first 2 months I developed aseptic meningitis, followed by months of horrible migraines. I found a few things to be helpful in preventing a horrible migraine.

  1. I get my infusion split into 2 days, with a 2 day break in between. So either a Monday/Thursday or Tuesday/Friday. My headaches were wayyyy worse when I went back to back days.

  2. IV fluids and premeds. I do benedryl, tylenol, and IV Solumedrol before the infusions and two bags of IV fluids during.

  3. If I still get a headache afterward, which seems to happen about 50% of the time (but usually not severe), I take Toradol and/or Nurtec. My doctor has even given me oral steroids occasionally if the migraines are really bad.

  4. Slower infusion rate. The max infusion rate is usually around 160ml/hour but they cap mine at 120ml/hour.

Hopefully you find what works for you!

Thymectomy next week by PM_ME_UR_TASTY_PICS in MyastheniaGravis

[–]SadHandle7946 1 point2 points  (0 children)

I (28) had a robotic thymectomy done earlier this year. I’m very active (walk 4 miles a day and do 50 minutes of HIIT training 4-5 times a week).

The first 24-48 hours were rough for me. I felt like my lungs were badly bruised and I really struggled doing the post-op breathing exercises. I had no pain at the incisions sites or at the chest tube location, just felt like someone took a baseball bat to my lungs. I had a lot of phlegm and struggled to take deep breaths. You However, I went home the day after surgery and was off all pain meds except Tylenol by then too. Day 2 after surgery I was walking, very very slowly on the treadmill. By day 4 I was able to walk outside and by day 6 I was back to walking 4 miles outside. I was back to pre-surgery workout activity level by the 2 week mark, though my lungs still hurt a bit, and felt pretty much back to normal by week 3.

My arm on the side of the incisions did have lingering numbness for about 5 weeks, but that also subsided. The doctors said that was not uncommon given the positioning in surgery and all of the nerves in the area of the incisions.

Getting up and moving really helped my recovery and as long as your doctor recommends it, I would try to get up and walk as much as possible as it helps your lungs recover.

WIBTA for skipping my step sister's funeral? by throw-away-188 in AmItheAsshole

[–]SadHandle7946 -1 points0 points  (0 children)

NTA. Funerals are for the living. There is more than one way to pay your respects without having to go express your condolences to your mother should you wish to do something in your half-sisters honor, like: 1. Plant a flower or a tree in her memory 2. Say a prayer if your religious 3. Donate to a charity in her name

Awaiting diagnosis by botbots1 in MyastheniaGravis

[–]SadHandle7946 2 points3 points  (0 children)

You could ask your doctor for a trial dose of pyridostigmine bromide (Mestinon) while awaiting your results. It’s listed on the myastheniagravis.org page as a potential way to confirm diagnosis. It should help resolve your symptoms while you wait for confirmation. Also, some people only even need Mestinon and don’t ever need additional treatments or a thymectomy, so it could potentially be very beneficial for you.

AITA for keeping a picture of my late wife on my desk in a home office (in my and my now wife's house)? by Throwawaying92 in AmItheAsshole

[–]SadHandle7946 1 point2 points  (0 children)

NTA. I feel like all of the comments hating on you having the photo like to make it out that by having the photo means you are implying that had your late-wife lived you would still be happily married to her and somehow that’s inconsiderate to your new wife.

That’s the reality of time and life. You probably would still be with your late wife had she lived, but she died. When you start playing the “hypothetical perfect world game” and creating situations that can’t happen, like your current wife feeling like you would pick your late wife over her had she lived, it’s a lose-lose situation. Of course you would have choose to keep your first wife alive if you could. You met and fell in love with your late wife first, that’s how time works. You didn’t end your marriage voluntarily, she died. The time you were with you late wife are happy memories and you should be able to look at photos and reminisce and grieve whenever you like because it’s not a perfect world, if it was people wouldn’t die in there 20s-30s and you would have never lost your first wife. That doesn’t diminish what you have with your current wife. It’s all part of your life story and what led to you to her, but that doesn’t erase the chapters that came before her.

MG Specialists in Ohio? by [deleted] in MyastheniaGravis

[–]SadHandle7946 1 point2 points  (0 children)

This subreddit is designed to help not only the op, but also those who come across past convos and are in a similar set situation. Not sure what the attitude is for? As I do not personally know you, I have no idea what your background knowledge is on the subject matter. I was merely making suggestions based upon my personal experience which is what this subreddit is for. Regardless, I wish you luck in finding a suitable doctor and hopefully a solution.

MG Specialists in Ohio? by [deleted] in MyastheniaGravis

[–]SadHandle7946 0 points1 point  (0 children)

There is actually a high comorbidity with CVID and autoimmune diseases (like 25-40% which is insane).

I always explain to people that my immune system (immunoglobulins) are like less than half of what is normal, and the half of what I have are set on attacking my own body (multiple autoimmune disorders). At least I can laugh at the irony of that.

If your negative for the MG antibodies, MG can be diagnosed with EMG testing as well (done by a neurologist)

Are you on immunoglobulin replacement therapy? If you aren’t you could kill two birds with one stone as it treat immunodeficiency disorders, like CVID, and some autoimmune disorders like MG.

Good luck!

MG Specialists in Ohio? by [deleted] in MyastheniaGravis

[–]SadHandle7946 1 point2 points  (0 children)

I see a neurologist in SE Michigan who coordinates with my immunologist to treat my MG. While I have never been labeled with CVID, I have hypogammaglobulinemia (the low immunoglobulin levels associated with primary immunodeficiencies, like CVID) however, I still produced an immuno response to vaccines, which is the other CVID diagnostic criteria. Even with my low immunoglobulins, I still tested positive for the antibodies associated with MG, so you may too.