Amy Cessina
Forum Replies Created
-
I golf , ride a electric bike , walk a lot, hike, some resistance training. Basically try to keep moving no matter what. I know it’s hard but in the long run it’s better for your overall health. But we all have different symptoms so getting the ok from your doctors is important. In the midst of severe weakness of course this wouldn’t be safe. If I’m honest with myself the first 30 -60 minutes or so of golfing or hiking I have pretty bad anxiety about something going wrong like I’ll get weak but I tend to settle in after that. I guess PTSD creeps in but I am able to rid myself of it after a while. I wish I didn’t do that but right now that’s my reality. (My symptoms are mostly in my face/neck /mouth, my limbs so far are not affected)
-
I don’t go out for dinner due to MG. Dinner foods are harder to eat. I will go out to breakfast and lunch. Most places here you can eat outside. I haven’t eaten inside in a few years. Never felt safe even before the pandemic. People just didn’t stay home when they were sick and all my bad flare ups have been illness induced.
-
I have a primary care doctor. He does all my yearly physicals, flu vaccines, prescribes my thyroid meds, treats minor illnesses, etc. . I don’t think a neurologist would do any of that. I feel you should have a good primary doctor to stay healthy. They will do all of your yearly routine screening. It’s much easier getting appointments with primary care too. They have not harmed me. (I fear dental work much more)
I still run every medicine by my neurologist on the portal system and only listen to her. My primary will then change to what she says if needed. -
They blame everything on something else except MG. Like “everyone chokes on food sometime”. The worst one for me was when I was having trouble swallowing my husband seriously told me to “not swallow for a while.” Actually my husband is not very understanding.
-
I have a drink from time to time. Just white wines, or Prosecco no hard liquor. I’m not sure about the MG symptoms because the dizzy hits me first. I use those smaller cordial glasses so no one can pour me a huge glass. Saves the explaining.
-
I made an appointment once for acupuncture and totally chickened out and cancelled. I’m glad to hear it might help. Maybe it’s something I’ll try at some point. I get neck pain also.
-
I wish you all the best on your first trip. I know exactly how you feel. I felt the same way and still do to a certain extent. Mentally, It does get easier as time passes. In my case I have a good amount of warning nothing ever comes on suddenly for me but I only learned that over time. Plus I always google the closest hospital. Sad to say but it gives me piece of mind.
-
Great question! I used to short change myself due to MG but my husband really pushes me. I’ve done things I wasn’t sure I was capable of. But it’s taken many years to get there. I ask him almost every day “ do you think I’m going to get better and back to myself” and he says “yes” every time. Helps me believe I can. Sometimes I think half the battle is your mindset.
-
I have no troubles with heat. But I am hypothyroid so I’m always cold so I’m usually glad to have some warmth. I do have issues with high humidity makes my breathing bad.
-
I watched the video in the link. Thank you for sharing the link, it is excellent information.
-
I had the Pfizer also. My arm swelled and hurt for months afterwards and seemed to spread. I’ve had body aches and pains since in my upper body. So my doctor did a bunch of blood tests. I am now positive for ANA antibodies. I’ve had autoimmune my whole life and never tested positive once for them. Now I have to see a rheumatologist and see what’s going on. Not sure if it was vaccine or not but very coincidental. Had an orthopedic doc X-ray and nothing wrong with my bones. It’s soft tissue. Doctor says she’s seeing people with same complaints as me.
-
Recently I had trouble swallowing. My neurologist kept saying it wasn’t related to MG because of way it was presenting. It went on for quite some time until it was found I had an infection under a root canal that had put a hole in my sinus and toxins were dripping down my throat. Sometimes we have to be careful not to be too narrow focused that everything is MG flare because we can miss other issues. I ended up in ER getting IV antibiotics.
-
I go to NY Presbyterian so all of my MG appointments that have been virtual for well over a year. They can’t do the neurology strength tests but other than that it has been good. I’m not sure when it will go back to in person. I have my thyroid check there next week at the thyroid center but they will see me in person for that due to yearly ultrasound .
-
I can believe the vaccine was the trigger for it. I keep hearing that many MGers have had pretty bad flare ups from it. I haven’t been right since and hope I get back on track soon.