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Gail R

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  1. GG: Did you cut out ALL eggs (including cooked in recipes)? I'd be interested in knowing more about that. I, too, feel sometimes like I've "used up" all my strength or muscle usage, even after sitting at my desk all day. There are times when I can barely take the cap off a gallon of milk that was already open, and then I end up spilling some milk when I pour it. I'm curious if either of you have Raynaud's Phenomenon.
  2. I took mestinon--my original neurologist thought I had myasthenia gravis--it's been so long ago I don't remember if I thought it helped. It must not have done much because he discontinued it after a couple of years.
  3. I have unilateral stuff from time to time--mostly left-sided, and mostly related to numbness. The left side of my face sometimes gets numb when I'm experiencing migraine (like today, for example). I don't really lose muscle function or control, but I feel like people should notice that things are lopsided. They don't--I've asked multiple people if they can tell a difference and they can't. My left hand is twitchier than the right, and my massage therapist and chiropractor always have more trouble on the left than the right. I feel more pain on the right, but the real issues are almost always o
  4. Hi, GG: Honestly, the twitching and cramps and spasms are probably my biggest roadblocks. For a long time I was really worried about having something like MS but when I finally got up the courage to ask, I was told I'd been tested for pretty much everything (MS. Lupus, etc.) and all those tests were negative. It was a huge relief, but didn't get me any closer to the root of the problem. I take magnesium for the muscle twitches, and while I wouldn't say it actually "fixes" anything I do notice a difference when I don't take it so I know it's doing SOMETHING. Magnesium plays a role in nerve
  5. I don't have orthostatic intolerance. I don't have orthostatic anything. That's what I mean when I say I'm invisible in the middle of an invisible diagnosis.
  6. I hope you've been able to get some answers in the past month or so. It's hard to go into a medical situation where the people who should know things just give you a blank look as if you've just made all those medical terms up. Good luck with your testing. I'd be really happy to hear about any results you get.
  7. Thank you. I really appreciate your kind words. I hope you are doing well.
  8. I'm sorry about your neuropathic foot pain. I have some, but it's manageable and not constant. That must be just awful. I hope you get some answers soon. Keep asking questions and pushing for help. And if you aren't getting answers or help, change doctors. It's a pain to have to retell your story, but it may be the best way to find someone who understands, or at least wants to understand.
  9. Thank you for this. I agree that the fatigue is the worst part. My husband just doesn't get it. I try to explain that when you HAVE to do things you can manage it, but then ability to do the fun stuff suffers. He tries to understand, but he really doesn't.
  10. I'd love to be in touch. I"m not sure how to do that on this site. I agree that diagnosis is tough, but what's tougher is when you finally have a diagnosis and it doesn't really make a difference. I just like having people I can turn to. Thanks.
  11. First of all, thanks to everyone who responded to my feeble wailing. I really hope I wasn't offensive to others with what I said--I'm just so frustrated that so few people get any of this, and that I can't be classified anywhere. To see so much emphasis on one symptom really gets to me sometimes. I hate labels, but in this case labels make the difference between a real medical condition and hypochondria. When I can act like a grown up and stop whining, I do get something from many of the discussions, even the POTS-heavy ones, but somehow it's not enough. I have one friend who has dysautonomia
  12. I have also had these a couple of times. It could be morphea: https://emedicine.medscape.com/article/1065782-overview I need to have mine checked out the next time one appears. They come and go.
  13. I know this is an old post, but I stumbled on it and liked reading through the list. I kinda giggled when someone posted that you had 'fatigue' twice. I personally think it should be listed more than twice! LOL
  14. There are too many threads to search through--we're all exhausted, remember?--so I'm starting what I hope isn't actually a new one, necessarily. Here's my question for all you DINET folks out there: How many of us are there who passed the tilt table test and don't have POTS? To those who suffer with it, I'm so, so sorry you have to live with such a terrible condition, but I'm actually really tired of feeling like everything in the dysautonomia world revolves around POTS. I'm on a Facebook group in my state and all they talk about is POTS. I hold down a full time job and have a pretty norm
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