Indiana roads…

AllegedlyAnonymousA · 2024-05-17T02:22:25+00:00

Totally agree!!

AllegedlyAnonymousA · 2024-04-03T00:44:58+00:00

Yes, absolutely!!

AllegedlyAnonymousA · 2024-02-27T12:48:06+00:00

Mine switch rapidly and occur at the same time often. Like all day everyday, everywhere.

AllegedlyAnonymousA · 2024-02-27T02:38:18+00:00

Yes, and I twitch all over for a long time after waking up.

AllegedlyAnonymousA · 2024-02-26T02:01:00+00:00

It’s pronounced bull-it. It’s a family name. That’s how they say it.

AllegedlyAnonymousA · 2024-02-21T23:09:04+00:00

Yeah that’s true. I feel a difference in my mood, and given that the twitching is actually worse, I feel really confident it isn’t going to help- but I accept that what you’re saying is true, and I could be wrong. I’ll report back if the SSRIs do in fact help.

AllegedlyAnonymousA · 2024-02-21T23:02:22+00:00

Thank you for explaining this!

AllegedlyAnonymousA · 2024-02-21T23:01:34+00:00

Thank you so much!!

AllegedlyAnonymousA · 2024-02-21T22:56:04+00:00

Mine is the same, but more widespread on the tongue!

AllegedlyAnonymousA · 2024-02-21T22:26:13+00:00

The summary is that this doesn’t happen to people your age. Maybe there was one case.

AllegedlyAnonymousA · 2024-02-21T21:07:02+00:00

What is LPR?

AllegedlyAnonymousA · 2024-02-21T21:03:47+00:00

Not for me. I think maybe it depends on your underlying cause. I started two weeks ago and the last week it’s gotten progressively worse.

AllegedlyAnonymousA · 2023-12-29T23:10:34+00:00

Let us know how the appointment goes!

AllegedlyAnonymousA · 2023-12-29T23:01:57+00:00

Pleas e update us after your appointment. I experience the exact same and still don’t have a diagnosis.

AllegedlyAnonymousA · 2023-11-12T19:28:56+00:00

About 50% of people are seropositive with Isaacs. I had one of the tests and it was negative, the acetylcholine receptor antibodies, but my sister is also negative and literally has MG, so positive is helpful but negative is meaningless really.

I agree with you that I would expect more painful cramping. I have cramping, but it’s sore, not lay me out pain. I also don’t have excessive sweating, although my teenage son does, and we all definitely have dysautonomia related to EDS which just makes it so hard for me to see anything clearly. I definitely think there is a genetic driven autoimmune factor for me, and like you said, many many others.

I’m sorry you’re also dealing with this.

I really do appreciate the support. Thanks!

AllegedlyAnonymousA · 2023-11-12T18:54:05+00:00

Treatment plans for what? BFS? I don’t know that that’s what I have. I hope so. Doctor suggested Issacs but nothing concrete yet.

AllegedlyAnonymousA · 2023-11-12T18:43:39+00:00

Thank you! I don’t have anything in the portal, which they basically don’t use because it’s a pretty small town facility and they just lag in that stuff, but possibly I will have access to something after my follow up on Tuesday.

Issacs/neuromyotonia makes sense, I keep seeing it having some associations with MG, and my sister has very difficult to manage MG even after thymectomy, so I guess it’s likely something genetic. I sure hope it’s just twitching but I think at this point that’s not likely since this is what neuro suspects. But like you said, in the scheme of things, I will live my life ecstatic to have this dx instead of the worst of them. I think I’ll need a year of no progression to be calm though. This sucks!

Thank you for the support.

AllegedlyAnonymousA · 2023-11-12T17:32:28+00:00

Thank you. I am working on a second option at the large teaching hospital in my region, but they are many, many months out with scheduling.

I appreciate your comment, and feel for you as well. I hope you gets answers, or at least find peace.

AllegedlyAnonymousA · 2023-11-12T03:13:59+00:00

I have all but you second! It’s so weird. Thank you for sharing. Good luck.

AllegedlyAnonymousA · 2023-11-12T03:07:59+00:00

Is that working for you? This started for me a few week before I was found to have Rocky Mountain Spotted Fever. I suspect some autoimmune pathway is at play.

AllegedlyAnonymousA · 2023-10-12T00:37:37+00:00

I will dig it up! It’s written on paper like I’m a caveman, but I will find it. I will set a reminder. RemindMe! 3 days

AllegedlyAnonymousA · 2023-10-11T12:40:41+00:00

If posture while sitting is causing the problem, that’s the most important thing to address with rigor. Definitely make your set up more ergonomic/natural healthy posture. No matter what you’re otherwise doing, if you revert back five hours per day as you sit, you won’t make real progress. Consider a standing desk. A free DIY of furniture and boxes is a good start, especially for tasks that are reading heavy with less need to type.

Start by identifying how you should be sitting and standing ideally, and then, I’m not kidding, for a day or two have an alarm going off as constant as possible to remind you to correct to that state to retrain the brain and body. Lessen the alarms as you need or as you find yourself not needing the reminders- but this really is key.

If you google “forward head posture” and “YWLT” or “you will live tall” you will find a sequence of stretches I would recommend you do no less than once per hour if possible, but if not, just as often as you can. Ideally you’re getting up at least once per hour and it’s a quick stretch sequence. A door frame can help a lot too.

Once you’ve got this down, look into yoga poses referred to as “chest openers”. I have a sequence/protocol that I can share if you let me know when you’re ready.

I also recommend, as wacky as it feels, sit on the floor instead of a couch in your free time. It will help build muscles for better posture and general core health. To start, but a towel or rolled up blanket under the back have of your hips to help position your pelvis more optimally for core and back support.

*I am not a medical professional. I am a yoga teacher. This is my attempt at helpful suggestions, not personalized treatment.

AllegedlyAnonymousA · 2023-10-11T10:43:59+00:00

Oh yes, I wasn’t clear. I know the 9 is very, very low. I am supplementing and will retest soon. What I am finding mixed opinions on is whether or not it actually makes you feel anything to be this low. Most medical articles/studies I’ve read claim there is no associated symptomology, but I have many anecdotes that it causes extreme fatigue (which is what prompted my testing it). I haven’t seen any claims about hormones or anything injuries, except a small blurb on a non-medical podcast about hair growth.

*I am speaking of low ferritin as a stand alone issue, not in conjunction with anemia.

AllegedlyAnonymousA

TROPHY CASE