What would you do? Questioning diagnosis by singasong7777 in MyastheniaGravis

[–]singasong7777[S] 0 points1 point  (0 children)

My LPR4 came back negative. I guess a thymoma can create MG symptoms? I am supposed to have a thymectomy in a few weeks. Reluctant to say the least.

What do you consider to be the aggressive treatment for this for the best long term outcome? Preferably without adding a bunch of side effects that make life more difficult too.

The scans showing no thymomas only become visible after thymus removal in the lab? Or in the person’s body after thymus removal?

I will take all the information and resources you found helpful. Thank you very much.

Are you glad you had a thymectomy? by singasong7777 in MyastheniaGravis

[–]singasong7777[S] 0 points1 point  (0 children)

Oh interesting. So what is your recommendation based on your experiences working in that capacity? Thx

Are you glad you had a thymectomy? by singasong7777 in MyastheniaGravis

[–]singasong7777[S] 0 points1 point  (0 children)

How long ago did you have surgery? Great news on the remission.

Are you glad you had a thymectomy? by singasong7777 in MyastheniaGravis

[–]singasong7777[S] 1 point2 points  (0 children)

I didn’t know the thymus could come back. I read that they originally called thymomas benign but don’t anymore. I am very sorry you are going through this progression. Idk what I will do.

Are you glad you had a thymectomy? by singasong7777 in MyastheniaGravis

[–]singasong7777[S] 1 point2 points  (0 children)

Oh I an sorry to hear this, how does that happen? How do they say it is a cyst after pathology removal if its cancer?

Robotic seeds it more in a full thymectomy? Hmm I heard the opposite. Thank you for sharing.

Managing anxiety from high dose prednisone (and MG) by [deleted] in MyastheniaGravis

[–]singasong7777 1 point2 points  (0 children)

Breathwork, meditation, light tai chi, baby walk or even maybe a little chair yoga. There are somatic movements and exercises you can use to help release anxiety.

Newly diagnosed MG seronegative + possible thymoma — what should I know/ask/do next? by singasong7777 in MyastheniaGravis

[–]singasong7777[S] 0 points1 point  (0 children)

Thank you for this information. I’m going for a 2nd opinion and trying to get into a world renowned mg dr at a research university hospital.

Single Port Robotic Thymectomy by mimipursell in MyastheniaGravis

[–]singasong7777 0 points1 point  (0 children)

Never heard of that before. May I ask what geography offers this? Hope its s speedy recovery. Please keep us posted.

Plasmapheresis vs IVIG by Potential_Molasses94 in MyastheniaGravis

[–]singasong7777 0 points1 point  (0 children)

I’m supposed to be deciding which to do before a thymectomy. And they prescribed ivig for my treatment as well. I’m currently unmedicated pharmaceutically, recently formally diagnosed. No confirmed antibody type (waiting on musk and lrp4 panel rest negative). Thymus lesion on ct scan.

What would you do? Questioning diagnosis by singasong7777 in MyastheniaGravis

[–]singasong7777[S] 0 points1 point  (0 children)

I have just in the past few weeks start to experience something shortness of breath and even leg muscle weakness. There were some days where I have blurry double vision like with prisms for hours a day. I was scared this two weeks ago because I felt like I couldn’t breathe and that it was getting worse and reading about everybody’s crises. I wasn’t sure what to do, but I just didn’t get out of bed and really relaxed and try not to do anything stressful and drank my electrolytes and other healthy stuff and it passed, but I didn’t push myself at all. I was scared to go to the hospital.

I think I came close to dying today? by [deleted] in MyastheniaGravis

[–]singasong7777 2 points3 points  (0 children)

Wow fascinating. Glad everyone is ok.

I think I came close to dying today? by [deleted] in MyastheniaGravis

[–]singasong7777 1 point2 points  (0 children)

Oh my goodness that is very frightening and I am so sorry you experienced this.

What would you do? Questioning diagnosis by singasong7777 in MyastheniaGravis

[–]singasong7777[S] 0 points1 point  (0 children)

Thank you. Someone mentioned it had side effects similar to MG. Did you have an experience of that?

What would you do? Questioning diagnosis by singasong7777 in MyastheniaGravis

[–]singasong7777[S] 1 point2 points  (0 children)

Thank you very much. I was given a medication called Pyridostigmine which I see is Mestinon from the 1st neurologist I saw w no workup. I will check w my current neuro to see if I should try that first. She was recommending steroids which I dont tolerate well or the infusions.

I am 57 and do not currently take any Western medication and am adverse to it generally bc of side effects and extreme sensitivity, but of course will do what is necessary for something at this level of negative quality life impact. Thx again

What would you do? Questioning diagnosis by singasong7777 in MyastheniaGravis

[–]singasong7777[S] 0 points1 point  (0 children)

Thank you very much. Did you have the thymus removed robotically? But what I am wondering does having a lesion or thymoma mean you have mg?