1. Oh my gosh yes! In a way I am glad to hear someone who can describe exactly what I am going through. I get this in my head (which also comes with this burning sensation like the inside lf my head feels hot) and along my spine and down to my feet. I've been trying to describe it to my neurologist but has so far disregarded it.

  2. I have been on Xolair for a year and I still get flare-ups. I get prescribed a Medrol dose pack every time. But Xolair plus prednisone is still much better than 4 antihistamines + steroids. Hang in there! I hope you'll start getting fewer flare-ups in between shots.

  3. Sonnet LXV by Pablo Neruda is a really sweet one. "I carry your heart with me" by E.E. Cummings is also a very good one.

  4. Um, that link you provided opens a video called "Who ripped the beaks off these ducks". Don't think you meant to send that one though?

  5. These are the words I live by: No company is better than bad company.

  6. I don’t post on Reddit much so I didn’t know how to add text to the post.

  7. Hi! I can't say much if it is Chiari (I am in the process of getting a diagnosis myself) but thought I'd share. My neurologist got me a video appointment to consult with one of the neurologists at Weill Cornell Neurosurgery in November. It is still a bit of time but the wait would have been much longer if I tried getting an appointment with a local doctor.

  8. It may sound old-fashioned but I found knitting/crocheting to be really soothing (as long as it doesn't cause you any joint discomfort or pain, of course!). I especially love using the bigger needles and thicker yarn so it's easier on my hands but it is quite immersive. And I get a giant comfy blanket at the end of it :D

  9. I think about this a lot. I get chronic migraines and severe facial pain and I've had a lot of people (most of them doctors) saying things like "There's no way you have migraines nearly every day" or "How could you be working/driving/ insert another normal activity if you're in that much pain?"

  10. I know it's a very scary moment to think, "What else could be going on?" But I think it is better to know now so you can get to feeling better soon than finding out much later. I've also learned in my many years of being passed from one specialist to the next, that sometimes, it's better to go in with zero expectations. It may be something or it may be nothing at all. The anxiety will just make it much worse. All the best to you!

  11. Oh my goodness, when I tell you she is the spitting image of my Saxon, I am not kidding!! They look soooo alike! Beautiful dog!

  12. I had TT last year and I think the most I gained was 5 lbs but I lost all of it about a month post-op. But take this with a grain of salt though. I am on other meds and I also have a pretty restricted diet due to other autoimmune issues. I think it's just all about familiarizing yourself with what your body needs once your thyroid levels begin to stabilize.

  13. Wow, that is awful and ignorant! My own surgeon told me this and I almost asked to switch surgeons if it didn't delay my surgerh. I told her I lost 50lbs at the worst of my flare up and she looked at the nurse in the room and said "It's the dream disease for women" and I almost walked out because I could have strangled her for that comment.

  14. Yeah they can be a little too ridiculous sometimes. I’m really considering TT because I don’t want my TED to get worse in the long run and hopefully I won’t need to do surgery..

  15. I got TT March of last year and while it has not stopped my TED, just the relief from all the other issues I had due to Graves' has been worth it and I highly recommend it, especially over RAI.

  16. Thank you! Quick question, how did it help you out? I’ve been on methimazole for 6ish years now and I feel like crap but my levels are fine 🥲

  17. Methimazole only worked for me for about a month before my levels started going up. After about 8 or 9 months, I was already on the max dose of Methimazole (I don't remember the dosage but I was taking 8 or 10 tablets a day) but my levels kept getting worse every monthly bloodwork. I did RAI which worked about 3 months before my levels went back up again.

  18. I don't see why not, but standard pickets are typically installed with the posts being higher than the top of the pickets, and the boards are usually gapped. If you don't mind that look and if it provides the privacy you want, then have at it. If you want more privacy, consider the wider fence boards you see on stockade fences. Either way, the wood isn't going to match without staining/painting...but since that fence is fairly new the colors may even out with age if you use the same kind of wood.

  19. Thank you so much for the info! I don't think I would really mind that the posts are shorter, I think I was concerned more that it would cause the pickets to be unstable.

  20. If it's not your fence, no you cannot do that. You can't hammer nails into someone else's property.

  21. I only took a week off. I also didn't really take any pain meds as soon as I got out of the hospital. But I work from home so I was able to stay comfortable. If I still worked in the office, I would have definitely taken 2 weeks off. The only other issue I had was my voice did not come back until a full month after surgery so talking during meetings was hard.

  22. I am also a software engineer and I adore my job even if there are days where it feels like it's killing me 😅. But I love the challenge and I am very fortunate I work from home and my company is flexible when I need time to address my medical needs.

  23. I’m so sorry!!!!!!!!!!!! I don’t know how you feel but I am dealing with my own horrible side effects and I swear it’s the Tepezza. Good luck and I hope you find relief.

  24. Thank you so much!!! I also hope you are able find relief for your Tepezza side-effects and that they won't be lasting once you are finished with your infusions as well! It's bad enough that we get hooked up to an IV every 2-3 weeks for a couple of hours but the side-effects are just... not fun 🥲

  25. In my experience, they discovered I had Graves' by blood work where they checked my T3,T4, TSH levels. Definitely request that from your endocrinologist or your GP. I know an uptake scan can also show if you have Graves' but I think the blood work might be the easiest and quickest way you can find out for sure.

  26. I have Graves, TED, MCAD (though I don't really know if this is an autoimmune disease? My allergist says it is though). The MCAD and TED came after my Graves' diagnosis and my doctors believe they were both triggered by my Graves'. Now my gp is suspecting IBD that was probably triggered by Tepezza which, if true, I am going to be so sad and miffed about haha because why must trying to fix one condition lead to a new one? 🙃

  27. I did both! Actually I did medication, RAI, medication, then surgery.

  28. I still notice at night sometimes when I try to sleep or close my eyes I sometimes need sunglasses to fall or stay asleep.. sometimes when I close my eyes I see “white” or a sort of brightness. Does this happen to you? Once in a while I’ll have the sensation of my eyes bulging but I think for me personally it is more of a fear because of how traumatic and fast the eye bulging began for me. Im curious to know if you have had any side effects after finishing the treatment (during or afterward)? I lost my period.. I have not had my period since June 2021, and finished my treatment in October 2021 and still to this day have not menstruated, I did all the hormone and Obgyn tests and all of my blood work is normal. Has this happened to you or do you know of anyone experiencing this from Tepezza?

  29. I also use an eye mask when I go to sleep for both dryness and extreme sensitivity to light. Whenever I see any flashing light, it's usually the aura before a migraine comes on.

  30. Hi.. I noticed you mentioned IBS.. just curious if you have had any correlated back pain, swelling, or anything cosmetic specially on the spine or lower back? Been to numerous dr’s and numerous tests and nothing seems to be wrong but it looks like a huge mass of inflammation/can be mistaken as a “fat pad”. Have you experienced any of these?

  31. Hi! I do have back pain but that's due to a different health issue. If my IBS flares up it is usually with a lot of abdominal cramps and bloating (and sometimes the bloating is so bad I swear I look like I ate a watermelon whole).

  32. I agree it sounds like Hypo. I lost weight and it was hard for me to put on any weight.

  33. Yes, of course, feel free to PM me! I am always open if you have any questions 😊

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