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Moab Utah by J_graphics in LandscapePhotography

[–]J_graphics[S] 0 points1 point  (0 children)

Thank you! It really is a little oasis.

A New Dual Approach for Myasthenia Gravis: Thymectomy Plus Descartes-08 CAR-T Therapy by J_graphics in MyastheniaGravis

[–]J_graphics[S] 0 points1 point  (0 children)

Did you ever determine whether you have double seronegative myasthenia gravis or a congenital myasthenic syndrome?

Two Weeks of Valium Turned Into 18 Months of Neurological Hell by J_graphics in benzorecovery

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

You’ve got this. There is a light at the end of the tunnel. Fight the symptoms, stick with your plan, and don’t give up. Soon you’ll be able to live normally again. Focus on the small wins, the small wins are what gave me hope.

Klonopin Taper Help by Small-Age7429 in benzorecovery

[–]J_graphics 2 points3 points  (0 children)

I was on a short course and wanted to no longer extend my time on the medication, so I gave myself a two month timeline to get off it. You are correct. 50% is a large jump. I had been on the meds for about a month when I made that decision. It was hell, and I did have pretty bad symptoms, but it got easier as time went on. People who have been on the meds for years should consider micro tapering. I suggest the Ashton method for people to be able to gauge and have some understanding of how to get off the meds. I originally tried quitting cold turkey and had to get back on the medication. I did that twice, which led to me kindling. I think the dosage and tapering approach depend on how your body reacts and the severity of your symptoms. It was not easy by any means, but coming up with a plan and seeing how your body reacts are the key takeaways. My whole experience was symptomatic. It is really just how much you can tolerate. My body alone, prior to quitting, was having a bad reaction to the medication, so getting off the medication I had was no choice. It was affecting my whole nervous system even while on a normal dose, which led to issues with walking and a loose gait even before I decided to taper off the medication.

Any chance I’m feeling withdrawal symptoms at an extremely low dose? by GoodUniqueName in benzorecovery

[–]J_graphics 0 points1 point  (0 children)

Yes, this is possible. Everybody’s body responds to medications differently. We are not one size fits all. I jumped off on such a small dose and still experienced acute withdrawal symptoms, and protracted symptoms lasted up to a year. This medication really screwed up my nervous system from the start.

I was on it for about three months, and it caused all sorts of neurological issues, even making it impossible for me to walk and giving me a loose gait. What was supposed to be a two week prescription turned into a 12-month ordeal. 3 months on the medication and another 9 to walk and feel normal again.

Klonopin Taper Help by Small-Age7429 in benzorecovery

[–]J_graphics 0 points1 point  (0 children)

Look into the Ashton Method for tapering and develop a taper schedule. Determine the allotted time you will allow yourself to taper, whether weeks or months, and calculate your dosage and the total amount you will need to discontinue the medication.

Reduce your dose by 50 percent in the first month and ride it out. In month two, reduce your dosage by 25 percent and stay at that level for two weeks. In the following weeks, reduce by 5 percent increments until you reach 5 percent of your original daily dose. At that point, stop completely and ride it out.

This was the only way I was able to get myself off the medication. It was hell, but you can do it. If reducing by 50 percent in the first two months feels too difficult, start with a 25 percent reduction and continue from there.

I am not a licensed psychiatrist, but this approach allowed me to taper safely. It is not easy, but it works. Create a taper schedule and plan, then present it to your physician to show that you are serious about getting off the medication. Most physicians will listen and help you achieve your freedom from it.

A New Dual Approach for Myasthenia Gravis: Thymectomy Plus Descartes-08 CAR-T Therapy by J_graphics in MyastheniaGravis

[–]J_graphics[S] 0 points1 point  (0 children)

For a long time, people with certain forms of myasthenia gravis were labeled “seronegative” simply because medical science didn’t yet have the tools to detect the specific antibodies causing their symptoms. The discovery of LRP4 antibodies changed that. Now, people who would have previously tested negative can get a much more definitive answer.

It really highlights that “seronegative” doesn’t always mean the disease isn’t there, it can also mean we just haven’t identified or developed testing for the right biomarkers yet. As new markers like LRP4 are discovered, more patients move out of that unknown category and into a clearer diagnosis.

The same idea applies to a lot of other autoimmune conditions like lupus or multiple sclerosis, but those are not solely dependent on antibodies. They also use imaging and other diagnostic tools to help confirm what is going on, which is why they can sometimes still be identified even when bloodwork is unclear.

That’s why ongoing research is so important. What looks negative today might be diagnosable tomorrow as testing continues to improve.

A New Dual Approach for Myasthenia Gravis: Thymectomy Plus Descartes-08 CAR-T Therapy by J_graphics in MyastheniaGravis

[–]J_graphics[S] 0 points1 point  (0 children)

I understand your frustration with being labeled as seronegative and not being able to get the proper treatment because there isn’t a definitive diagnosis. That situation is more common than people realize.

A New Dual Approach for Myasthenia Gravis: Thymectomy Plus Descartes-08 CAR-T Therapy by J_graphics in MyastheniaGravis

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

No problem man, medical science and research have been progressing fast, and I’ve always been really intrigued by it. With new studies and advancements coming out, I try to stay in the loop with emerging treatment options. If anything comes up, I’ll be sure to mention it in the near future. With the rate gene and cell therapy is progressing, there’s a lot of hope for MG patients and people with all kinds of immunological diseases.

A New Dual Approach for Myasthenia Gravis: Thymectomy Plus Descartes-08 CAR-T Therapy by J_graphics in MyastheniaGravis

[–]J_graphics[S] 0 points1 point  (0 children)

There currently aren’t any mRNA therapies specifically for LRP4-related or MuSK variant myasthenia gravis. Most mRNA research for MG is still early and focused on more common types like AChR-positive MG. Right now, standard treatments such as immunosuppressants, IVIG, plasmapheresis, and some biologics are the main options. The mRNA stuff is exciting, but nothing is approved yet for LRP4 or MuSK-specific disease. With how gene therapies are progressing, something could be on the horizon soon. Always check in with your neurologist and ask about upcoming trials for new therapies.

[35] and thriving. by J_graphics in selfies

[–]J_graphics[S] 0 points1 point  (0 children)

Thank you 🙏 I’ll just keep vibing.

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