[suzanne-x]

I developed ME/CFS around the same time as MG — I had a positive ANA & over-training injury (rowing) in spring 2009, traveled abroad in summer, and then my health quickly deteriorated upon return in the fall. By spring 2010, I had dx of generalized MG and Hashimoto’s Thyroiditis; I had a bunch of other bizarre, unconnected symptoms which required additional investigation. I was diagnosed with ME/CFS at Georgetown, but never really have had it treated, even during my appt at Mayo Rochester (2011). It remains this insidious shadow that still significantly limits my existence. Consider checking out this quiz by the advocacy group for ME/CFS: https://solvecfs.org/me-cfs-long-covid/do-i-have-mecfs-quiz/ (link still works for me)

solvecfs.org

Do I Have ME/CFS? Quiz - Solve ME/CFS Initiative

Take our short quiz to see if you may have ME/CFS.

[suzanne-x]

I was diagnosed with MG at age 23 (drooping eye lids, blurred vision, weakness in hands & arms but advancing quickly) in 2010. I used Mestinon and tried Prednisone, the latter only aggravated symptoms and caused significant weight gain which made life with weakness even more difficult. I had my thymectomy (no thymoma) in early 2012 and wish I’d done it sooner. It helped with the more significant symptoms and I believe completely altered the trajectory of MG for me. While scientists are now understanding that the thymus does play a significant role in the immune system past adolescence (originally thought to just be adipose tissue), I would still undergo a thymectomy as it’s saved me from difficulty chewing, swallowing, and breathing / MG crisis.

https://news.harvard.edu/gazette/story/2023/08/turns-out-lowly-thymus-may-be-saving-your-life/

 

Good luck!

news.harvard.edu

Turns out lowly thymus may be saving your life

Study suggests the organ plays a vital role in immune health, particularly cancer prevention.

[suzanne-x]

Hi,

I’m happy to share my story if you still need contributors. Along with MG, I’ve developed another autoimmune disorder, POTS / dysautonomia, gastrointestinal issues, and several chronic overlapping pain conditions.

[suzanne-x]

I got the flu ‘& Covid bivalent booster (Moderna) on the same day in September. I wish I’d spread them out because they really knocked me on my behind. I haven’t had any issues with any of the 5 Covid shots, except some soreness at the injection site (massaging immediately after helped) and symptoms that mimic allergies / histamine reaction (congestion, ears plugged up, etc.) — I definitely have mast cell issues, which apparently go hand in hand with dysautonomia. I am exceedingly fortunate in that I haven’t gotten Covid, and I hope it stays that way.

[suzanne-x]

I’m really sorry to hear this development — autoimmunity is awful. However, while it is rare to have both Hashimoto’s (which I too have) and Graves, I know several people with both. Perhaps becoming more common with more endocrine disrupters in our environment.

I am very fortunate to still be in the “Last Longer” club — thanks to living alone, masking anytime I leave the apt, being vaccinated and trying to keep people 6′ away from me (easier said than done). However, isolation is rather depressing. But I would not want to survive if I contracted covid given all my additional comorbidities.

With you in solidarity.

[suzanne-x]

I think it’s critical that these studies state the specific material that is being smoked — tobacco is miles removed from cannabis. I’ve never smoked tobacco and haven’t had much exposure, aside from living in Cairo for 2 months (air is basically saturated with tobacco) leading up to the onset of MG at age 22; however, my mom’s father smoked throughout her childhood (epigenetics ??). To manage chronic pain, I’ve used cannabis regularly for 13 years without any adverse effects, even with exercise-induced asthma (at least to my knowledge).

[suzanne-x]

Hey, I’m also a female under 40yo with ME/CFS and generalized (AChR positive) MG, since 2009/2010. I went to Mayo Rochester in 2011 after MG diagnosis for another issue, but was seen by neuro & surgery (consult for thymectomy). Did Mayo do anything to treat ME/CFS? They didn’t touch it, nor would anyone else for years, so I’m curious as to whether Mayo has any treatment or ways of mitigating this insidious, debilitating illness.

[suzanne-x]

Thanks for your share, Jonathan. Unfortunately, the GI issues cropped more than a decade in advance of MG. I hope you stay well / stable enough to avoid the hospital and all it entails again.

 

Thanks for this resource, @Jodi!

[suzanne-x]

I can definitely see the impact of smoking on my blood pressure / cardiovascular system, but it doesn’t affect MG for me. I only started smoking because I developed fibromyalgia about 6 months before the onset of MG (I had a positive ANA before studying abroad in Egypt — after that my body quickly fell apart, but it was a perfect storm / multifactorial). I’ve never used tobacco paper — just bowls & bongs. Given decades of chronic pain, I can wholeheartedly say I would not be here without it — especially with chronic overlapping pain conditions.

 

 

I’m still very curious though!!