March 19, 2022 at 12:39 pm #18666Jodi EndersKeymaster
What is weighing heavy on your heart at the moment? Where do you need support in your life right now? We are here for you!
March 24, 2022 at 2:44 am #18697MichelleParticipant
What perfect timing!
What is weighing heavy on my heart is that I have been working for four months now trying to get into one of the bigger clinics to get help with my MG and it is so difficult. In NM there are very few neurologists and those there are have very little experience with MG.
I have also just had a CT scan that showed a tumor on my thyroid and another in the area between my lungs. It has been very difficult to get scheduled to have the recommended biopsies. One doctor will only refer to a thoracic cancer surgeon. I have to have my primary care doctor refer me to an endocrinologist and I haven’t been able to speak to anyone to request it for over 2 weeks. I am frustrated that the medical system doesn’t work and I have to set up reminders for myself to follow up on each call every 2 to 3 days.
Good news: I heard from Cleveland Clinic yesterday to schedule an appointment for late April!
I appreciate the opportunity to unburden some of this to my fellow MG friends.
March 24, 2022 at 12:11 pm #18700KarenParticipant
Hope is what I desperately need!
I am very disappointed that Vvygart (efgartigimod alfa-fcab) was not approved for sero-negative patients. While clinically, it is “loosely” referred to as an in-vivo PLEX (PlasmApheresis), I strongly believe it should be available to all MG patients who have responded to PLEX as well as those in the clinical trial participants.
That being said, I am being keep alive by PLEX every other week—my ports are old >5-years, I have clotted off several veins in the upper arms and neck (likely due to the presence of the ports) making replacement of the ports a risky option.
I had an A-V fistula (like they use for dialysis) placed in my L arm so that the ports can be removed and they can “clean-up” the clotted areas; but it is still maturing, and has clotted 2x’s already.
There are no other options now—I use a Trilogy at night and for 1-2 hours during the day and will now be started on a negative pressure (Hayek) non-invasive ventilator b/c I’m desaturating at night. Any lung infection could take me out and I’m slowly losing ground.
I want to be alive and functional for my youngest son’s college graduation (2024). At this point its a toss up on who will die 1st, my 85 year old healthy mother-in-law or me (54) and the odds are not in my favor.
Being told not to get stressed about it is NOT helpful.
March 24, 2022 at 9:23 pm #18709LISA MICHELE HALLParticipant
Hello all I am newly diagnosed and have not been told what type of MG I have. my issue is extreme pain in both legs upper and lower and both arms upper. The pain medicine does not help. I am very depressed because I am in so much pain and cannot do almost anything I used dance exercise etc. Is there anybody out there with pain? I know the pain is from the weakness in my extremities and I am on IV/IG doesn’t seem to be helping. Was on prednisone REALLY upset my GI system and added anxiety. I hope someone can relate to my symptoms….VERY DEPRESSED
March 29, 2022 at 3:22 pm #18739Eric WerveParticipant
I’m going into my fifth year after diagnosis. We have tried several approaches with minimal stability. Different meds in addition to IVIg, Rituximab (discontinued), and Soliris. I still have frequent bouts of fatigue and sudden weakness. At one point I developed DVT and blood clots in the lungs, landing me in the ICU for a little over a week. I am now on blood thinners and warned about falls and the dangers while on thinners. Since I experience sudden weakness, my exercise has become even more limited because I fear falling and having an internal bleeding incident. It seems with each treatment comes new complications. Have ideas or suggestions?
Recently several stressors have increased symptoms. I am now trying Oxygen Hyperbaric Therapy to try to gain some stamina and decrease fatigue for our son’s wedding. Any data on the treatment?
March 31, 2022 at 9:52 am #18758Doris VedderParticipant
I am one week post op thymectomy. Would like information on post op experience.
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