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    • #18025
      Jodi Enders
      Keymaster

        Have you contracted COVID-19?

        Did you contract it more recently or towards the beginning of the pandemic?

        What was your experience?

        Have you sustained any long-term COVID side effects?

      • #18028
        paul spychalski
        Participant

          I tested positive but felt fine. 3 days latter I was very sleepy, all the time. I ran a 99 deg. temp. and had depression thoughts. That lasted 3 days. I lost some sense of smell nd taste. That was Nov. 2021.

        • #18041
          Jokaryeli Ventura
          Participant

            Hi, I contracted Covid during the Christmas recess. I am fully vaccinated and it is going okay. Not much symptoms and MG is behaving. A couple of times I felt very tired, I have been quarantined and keeping everything as disinfested as I could.

          • #18044
            John Gore
            Participant

              After both vaccines and booster still got Covid. Very mild case just some coughing and diarrhea (yuck!).  Whole family had it before me so no way to avoid exposure.

               

              • #19506
                Michael Van Alstyne
                Participant

                  I tested positive until after 2 weeks. Felt about the same as always. After 2 months still have a cough remaining though.

              • #18062
                Thomas Lee Clark
                Participant

                  <b>I tested positive dec 7 2021 and rcv’d iv antibody cocktail 13 Dec. Never lost taste, smell, no fever, Oxy level stayed low 90’s with COPD. Had cough, Rales in lower lobes and bronchial phlegm. sore neck muscles. Took all over counter remedies. Tired all the time and sleep. My wife also had the cocktail but she was much worse, so I nursed her. She had fever, headache body ache like flu symptoms. We are both through and we think we were exposed at the same time. I woke up Wednesday morning seeing DOUBLE which lasted about 3 hours and I took another sleep, woke up and my vision is back to normal. I never had the shots. Since the thymectomy never experienced any MG symptoms, first time. Perhaps this episode was a reminder for how blest I am. The covid was nothing compared to gMG I had. MG is bad but I listened to some vax shot reactions and one girl was on a feeding tube with little hope. An eye patch is small thing. I could drive one – eyed but the choking and gagging to clear my throat while necessary, made many at the table ill. I made one engineer recoil when he looked at me while eating breakfast on a business trip we took together. he did not know about my eyesight. Funny stuff happened all the time.</b>

                   

                • #18135
                  Tay
                  Participant

                    My husband had been sick for several weeks, it started with a cold around Christmas time.  It progressed and he tested positive on January 10th, 2022.  Five days later I tested positive.  I am fully vaccinated.  I have been quarantined since the 10th.  Today is the 25th.  I didn’t start running a fever until just a few days ago, it has been pretty low grade.  Highest has been 100.4.  I take Tylenol, that helps that come down.  I have had severe coughing and congestion, headache, runny nose, chills, body aches, my throat is swollen and sore, and I’ve had shortness of breath, loss of taste and fatigue.  The fatigue  is horrible.  In addition to MG, I have CFS and Fibromyalgia, and asthma. I had just started to feel better after a hard case of bronchitis, when I got this.  I try to sleep but coughing keeps waking me up.  A few nights ago I was having a very hard time breathing after waking up from a nightmare.  My dog was standing in the bed over me, checking on me, three times that night.  It was rough, but not to the point of going to the hospital.

                    I’ve still got the symptoms.  It has exacerbated my MG a bit, but not in an unmanageable way.  Double vision is occasional, shortness of breath definitely plays a part, my O2 has stayed about 96.

                  • #18147
                    Lovina Wolgamott
                    Participant

                      In September of 2020 I was transferd to KU Medical Center. I was in a MG crisis which was when I found out I had MG. In November 2020 I tested positive for Covid. I was admitted to ICU where I fought for my life. 24 days later I was able to go home very very weak. I have been fighting extreme fatigue. I am on oxygen never was before Covid. I have just recently been diagnosed with COPD I have never been a smoker. A lot of my issues is a combination of Covid and MG according to the doctors. I am at this time fully vaccinated with 3 full vaccinations of Moderna. I was in the hospital 2021 6 times with respertory infections. I am not writing this for pity, I am back at work in an elementary library where I have worked for 18 years. I walk the halls with my oxygen and walker but I keep moving forward and still holding out hope to get off oxygen. If not we will deal with it. I have an excellent support from my family and friends, and am looking forward to 2022.

                    • #18170
                      Deb Couraud
                      Participant

                        Managed not to get Delta but 2 Pfizer Vaccines and Booster later  after my regular 3 week IVIG Dose and my every 6 month dose Rituxan which I received.
                        I woke up extremely sick. My PCP ordered me the Monoclonal Antibodies specific for Omicron which was detected in my PCR . I just couldn’t recover my Covid symptoms were better after 3 weeks but the illness put me in Crises so ended up on Covid Unit in full blown crisis. I was given 5 days of IVIG . I am better but still fatigue weak and have ptosis blurred but not double vision.  The hospital was tough because on Covid Unit not Neuro the nurses not really up to par on Myasthenia Gravis or IVIG plus they would not let me have any personal property except phone and charger no visitors at all .

                        Myasthenia Gravis is a very solitary disease the isolation and loneliness constricts you like a Python taking the very life out of you .

                        Rituxan seemed to improve my symptoms best I’ve been in 4 years. Imuran, Mestinon, IVIG every3 weeks, prednisone couldn’t do that . I was out of the hospital for the first time since my diagnosis for a entire year. Covid took its toll on me .

                      • #18166
                        Amy Cessina
                        Participant

                          I dislike posts on covid because.they can wander into this great divide.  But I am glad everyone here has recovered and I hope the best for those who have lingering  issues. I think people should stick to the topic at hand and I believe posts with vaccine or treatment mis information  should be rejected.

                        • #19214
                          Mary Jane Tynan
                          Participant

                            Febr 28, 2021 received 1st Pfizer vaccine. Next day 3/1/21 admitted through emergency to hospital. Vaccine exacerbated MG. Could not swallow even saliva. While they we’re putting in feeding tube it caused bleeding. Bad went to worse fast.  In ICU for 12 days on ventilator and feeding tube. 17 day in hospital. I ended on oxygen 24 hrs. After 2 more exacerbations in June and September. It was a very rough year.
                            UTIs led into the June and Sept 2021 exacerbations.  Now May 2022 had outpatient IVIG (UTI again causing MG). HOWEVER since May 16th 2022 I have been MG symptom free!!!  It is the best I have felt in way over a year.
                            just let me say – I have many family and dear friends who have been praying for me faithfully!  I am so very grateful!

                          • #19226
                            Thomas Lee Clark
                            Participant

                              #19225 I posted on the clotting the info on COVID My mistake. Covid did not cause this malady I was born with it. I had the Omicron version, nearly none of the classic symptoms. No fever, taste and smell ok but tiredness and sleepiness is hanging on.

                            • #19419
                              AnneL
                              Participant

                                I refused any vaccine.  I felt it was too risky for me and I probably wouldn’t build immunity anyway.  I’ve had COVID twice now. The 1st time, I was given Regeneron and felt so much better within 12 hours.  No hospitalization and it took about 2 weeks to completely get over it.  That was in Dec. 2022.  Now, June 2022, I have COVID again!  This time, I was given the new oral Paxlovid.  It took longer to work, but did finally relieve all but lingering respiratory symptoms by day 7.   Again, no hospitalization.

                                COVID wasn’t as bad as I had anticipated compared to a Norovirus episode which hit me in March.  That almost put me in the hospital and took a good, long 6 weeks to recover.

                                I hate being Immunocompromised and living life in a bubble for fear of catching “something”.

                              • #19488
                                TheresaG
                                Participant

                                  I had the Omicron version, hit with a sore throat, loss of taste, mild headache, 1 day fever 100.4, no appetite, lots of fatigue, congestion in chest,  no appetite, YAY,  only plus as I’m still on prednisone so lost 3 pounds.

                                  most symptoms disappeared after 8-9 days except clearing chest congestion took about 14 days. All in all felt like a cold/flu, not serious.

                                  i am fully vaccinated with Pfizer and 1 booster.
                                  now 5 weeks after 1st symptoms I have no lingering effects.

                                • #19512
                                  Pamela Gleeson
                                  Participant

                                    I had the shots and boosters but came down with what I thought was an allergy. Husband suggested I test anyway and I was surprised to have Covid. Did a 2nd test from a different manufacturer and still positive. 2nd day I had a pretty bad cough. 3rd day, no cough but I sneezed a lot and had diarrhea. 4th day I felt fine. Never had fever over 99. Oxygen level got to 94 once but usually around 96-97. It was actually less of a problem than having a cold. I take 300-400 mg of Pyridostigmine and 2500 mg of Cellcept daily.

                                  • #19513
                                    JACK FLAUGH
                                    Participant

                                      I tested Positive on July 4th -(2 tests) —  very sore throat, severe headache, some congestion. I woke up on July 6th and I had very little of these effects and as of today, I have no symptoms. I took at an home test an hour ago and still Positive.

                                      I have had Pfizer Covid-19 2 shot and 2 Boosters since the beginning and up until this point I have not had any Covid Symptoms.

                                      I was diagnosed with myasthenia gravis in 2013 and currently living a pretty normal life after many doctors and medicines. Currently I do  Soliris infusions every 2 weeks and have weened off all other medicines. I feel very fortunate to have a good Neurologist who is open to discussions.

                                      With all I read on these sites- I am Blessed!

                                    • #19540
                                      Mick
                                      Participant

                                        I was in MG crisis when I tested positive for Covid December 23. I got it from my wife, who had tested positive about a week earlier. We tried our best to stay in separate ends of the house when she tested positive, but I pretty much knew it was just a matter of time. She was very sick. When I tested positive, my doc told me I should immediately go to the ER and get the monoclonal antibody infusion, he was very stern in his direction and said I should not hesitate due to my compromised immune condition because of the MG. I had the monoclonal antibody treatment on the 24th, the only Covid symptom I had was a slight fever, 99.6 and the early signs of a sore throat. I went from those mild symptoms on the 24th, to literally fearing I was going to draw my last breath in this life on the 25th. I had trouble breathing, my O2% went down to 83% and stayed there, my temperature went to 104, and I was so fatigued I couldn’t get out of bed. The Covid came on me so fast I felt more like I had been poisoned rather than contracted a virus. It was very scary. I refused to go to the hospital in fear I would be put on a ventilator and would simply die there. I made the decision, right or wrong, that if I died, I’d rather die at home rather than in a hospital room on a ventilator, by myself. It took about 6 weeks for me to begin to feel normal again, I lost all my sense of smell and taste, however now have no lingering effects of Covid, just back to dealing with MG. I only recently recovered from the MG crisis I was in, after I began participating in a MG medication clinical trial. I have been participating for three months now, and for the first time since I was diagnosed with MG three years ago, have gone a full month now with no MG symptoms whatsoever. One whole month now with no MG symptoms. I literally feel like my old self again, complete with zero fatigue and have gotten my strength back. I am cautiously optimistic that I can keep this recovery up!

                                      • #19709
                                        Annemarie P
                                        Participant

                                          Yes, I’m seronegative, not in remission, got Covid. Horrible for 4 days, until day 2 of Paxlovid. Don’t wish that virus on anyone, I can see why it was so deadly. Glad I , at least had my vaccinations!

                                        • #19711
                                          Jacqueline Marquiz
                                          Participant

                                            Yes, I contracted Covid end of April. I’m unvacc’d. I had a headache in the middle of the afternoon and took a one hour nap. Woke up and felt fine. Got out of the shower before bed the same day and had hot sweats. Took a test and tested positive. I went to bed and woke up with no symptoms after that. I stayed home for three days and worked out. Went outside and played two hours of pickle ball with my son. Thankful that I haven’t had any issues with MG since :))

                                          • #19852
                                            David S
                                            Participant

                                              Just tested positive this morning.  Sore throat, a bit achy all over and mild head ache.

                                              Dr. is calling in a script.  Probably Paxlovid.

                                              We have been very careful over the months but I guess I let my guard down a couple of days ago for a couple of hours.

                                              We have always worn our masks in public but….  OOOOPS.

                                               

                                              • #19853
                                                TheresaG
                                                Participant

                                                  Had it in April.

                                                  sore throat on a Wednesday, tested positive Friday, very fatigued for about 5 days. On Sunday had a 100.4 fever, for half day.

                                                  drank lots of fluids, OJ, ate chicken soup, lost 5 pounds, just laid low for 5-7 days. Took 12 days to test negative. Had about two weeks after where I had mild chest congestion phlegm. I did ret an antibiotic so it would not turn to pneumonia or anything.

                                                  you’re still in the time you can get Paxlovid, people I know who took it git rid of symptoms in 2 days.

                                                  Good luck.
                                                  For me I’ve had worse flu’s. I am totally vaccinated.

                                              • #19855
                                                David S
                                                Participant

                                                  Molnupiravir was prescribed.

                                                • #19856
                                                  David S
                                                  Participant

                                                    Day 2 –

                                                    It’s hard to say but with MG I mostly feel the effects of Covid in my throat and nose.  Sore throat to begin with then phloem developing.  Runny nose much of the time.

                                                    Did get a terrible case of the chills yesterday morning..  My body was firing all over at the same time that left me with tremors all over.

                                                    I would like to say mild joint aches but I think I have them anyway.

                                                    Have not spiked a temp. although it felt to me like I did,

                                                    Wanted to check my o2 level but couldn’t fine our oximeter.

                                                    I am mainly observing my respiratory system.  Drinking lots of fluids, taking vick’s 44 and Mucinex and ibuphrophen on occasion.

                                                    Scott

                                                     

                                                     

                                                    • #19857
                                                      TheresaG
                                                      Participant

                                                        Sounds pretty familiar. Found the phlegm stuck around awhile but never super bad.

                                                        is the mucinex not the D version which is contraindicated?

                                                        hope it passes quickly for you. My fever was 4 days after positive test.

                                                    • #19858
                                                      David S
                                                      Participant

                                                        The Mucinex is a generic store brand. I do not believe it is a D.

                                                        Got the chills again last night and got another blanket to stay warm.  Slept better.

                                                        Feel the same today.  Throat is no longer sore but do have some deep phlegm.  Coughing and sneezing producing phlegm.

                                                        Drinking lots of fluids.

                                                        Scott

                                                         

                                                      • #19859
                                                        Sharon Haw
                                                        Participant

                                                          Yes I have Covid now. My first symptoms were Aug. 19, 2022. I had 4 shots, but was due for a full booster on July 24, 2022. Foolishly decided to wait for a bit to hear when variant booster would be available. Learned I could have had Evusheld antibody shots as preventative but I have to wait until 14 days after Day 1 of symptoms. Initially, bit of cough, bit tired, sore throat, brain fog and upper mid back pain – all off and on, one at a time. On Day 1, was prescribed Symbicort inhaler and Pulmicort nebules to use in sterile sinus rinse. Started 5 days of Paxlovid antiviral pills on Day 2 of symptoms which stopped it from worsening and slowly got better. Vomiting and diarrhea with first dose but I took it on an empty stomach after that and no more stomach upheaval. I’m on day 13 after symptoms started and I’m more tired than before but I overdid it two days ago and have been more tired off and on since. Caution: don’t return to normal activity level until your symptoms are gone. My neurologist said not to stop Mycophenolate but I reduced the dose to 2 (500 mg.) capsules per day from 4 on Day 1 of symptoms, and I’ve increased it to 3 per day today.

                                                        • #19861
                                                          Lovina Wolgamott
                                                          Participant

                                                            I contracted Covid 19 3 months after being diagnosed with Myasthenia Gravis and was in a crisis. This was in 2020. I have always wondered if the combination of the 2 is why I had it so bad. I did have the pneumonia and blood clot in the lungs. I spent 24 days in the hospital. Unfortunately in March of 2022 the pulmonologist diagnosed me with COPD from the covid. I am a non smoker. I am 65 years old. So we are still coming to terms with everything almost 2 years later and still on oxygen.

                                                          • #19864
                                                            luz d sharpe
                                                            Participant

                                                              Well after almost three years avoiding this virus it finally got me in the beginning of august. I started with a headache, that would not go away, by day two I had a raging fever, body chills, a horrendous sore throat, a nasty cough and my entire body ached. I called my neurologist on day two because I felt my breathing becoming an issue. ( I have seronegative mg, which we barely have control over.) I was sent to the emergency room where they were expecting me. They had neuro critical care team see me, who admitted me immediately contacted my neuro who told them that they would most likely need to intubate soon (I’ve been intubated over 8 times because of my mg.) they tried the bipap machine but to no avail, in less than 8 hours I was intubated. I was treated with Remdesivir for the covid along with 125mgs of steroids daily and a round of ivig for the mg. I was intubated for a week! Could barely move any part of my body. It took a little over two weeks but I beat it, barely. I’m home but I can do very little before I am completely exhausted and done for the day. I’m still coughing and still have no sense of smell or taste. I have muscle weakness that I am seeing physical therapy and occupational therapy for. Still do not feel like myself and no where near my baseline.

                                                            • #19870
                                                              Rebecca
                                                              Participant

                                                                I live in Washington State and became sick with a respiratory virus in January 2020, and again in February 2020. It was in February and March 2020 when other odd symptoms began. I had extreme fatigue, was unable to walk very far, let alone stand to take a shower. I lost my voice, and it felt like food was getting stuck in my throat and esophagus. My right eye began to close unvoluntary when I looked up. I had constant dizziness and weakness, developed livedo reticularis on my legs and arms, had a mouth full of sores, and lost massive amounts of hair. After seeing a neurologist, I was told I had probable generalized myasthenia gravis (although I was seronegative) and was sent to three different neurology specialists (and countless other specialists, such as endocrinology, cardiology, etc ) for additional tests. I was put on Mestinon and intermittent steroids for seven months while I went through a series of tests, and was in speech therapy to regain my voice.

                                                                After all this I was told I don’t have myasthenia gravis and was taken off the meds. I’m much better but I’m still not 100%. I take 10 steps forward and five steps backwards, it seems. I don’t have proof of a covid infection because there were a shortage of tests during the beginning of the pandemic, and there was different criteria to qualify for a test (must have recently traveled, etc.). I’m now participating in a four-year NIH study for long covid, which is only a theory that I may have. It’s not definitive. All I know is my heart goes out to you all with confirmed MG. I’ve never been that sick, and I’ve never felt so dissolute as when I received that probable diagnosis in 2020. You have my full compassion and support.

                                                                I’ve now had four covid shots (I’m over 50) and I am risk adverse when it comes to covid (and other viruses, for that matter). I still wear N95 masks indoors and keep most all activities outdoors. I’m terrified of ever being that sick again, and the constant medical bills during that time frame weren’t ideal either. I also don’t wish to contribute to anyone getting sick because of me (the mRNA vaccines don’t block transmission) and I don’t wish to contribute to the rise of new (and potentially worse) variants. But I understand everyone has different risk tolerances.

                                                                Anyways, I wish everyone in this forum a joyful and healthy life. I will continue to support your causes although I don’t have MG.

                                                              • #19872
                                                                David S
                                                                Participant

                                                                  Feeling better today.

                                                                  Slept well last night.  No chills.  Still no fever. O2 level 95.  Less coughing and sneezing.

                                                                  Scheduled for my monthly IVIG next week.  The Neuro says OK as long as I test Negative.

                                                                  Wondering if I will be able to get in some yard work tomorrow.

                                                                  Scott

                                                                • #19890
                                                                  Amy
                                                                  Participant

                                                                    Hello, I just was diagnosed with Covid Aug.25th, neg. home test, but positive PCR test. I knew I was sick, becase I was woken from a sound sleep by a screaming headache with a very sore throat. I have had all my vacinations and booster, but was considered high risk for Covid complications or death so I was given the monoclonal antibody infusion. My kidney function was too low to take the oral antiviral. I have more shoulder weakness than normal, which might be from coughing so hard for a couple of days. I think the worse thing that hasn’t gotten better, even though I rarely cough now, is my eyesight. I have no control over my eye muscles. My eye lids are droopy all the time and my double vision is awful. My eyes are very red and dry. I am only taking Mestinon and that is not helping at all. I head to Mayo next week and see their MG team. One additional thing I noticed every morning, while actively coughing I would wake up and feel like someone had me in a big bear hug. I had lots of tightness around my ribcage. I am still very short of breath and tired.

                                                                  • #19901
                                                                    David S
                                                                    Participant

                                                                      In preparation for my IVIG this morning, I tested last night and the results were Positive.

                                                                      Contacted my Neuro and PCP to advise and see how I can get this treatment.  I understand that many can test positive for up to 90 days.

                                                                      I feel no symptoms other than some coughing.

                                                                      Scott

                                                                    • #19933
                                                                      David S
                                                                      Participant

                                                                        Still testing Positive for Covid.

                                                                        Bit of a cough and runny nose.  No temp.

                                                                        Still quarantined.

                                                                        I must test Negative two times in 24 hours before I can reschedule my IVIG.

                                                                      • #19985
                                                                        Amy Cessina
                                                                        Participant

                                                                          I got covid after attending a wedding stupidly without a mask. I had fairly mild symptoms but it hit me in the throat area mostly. Very bad dry Cough for a few days and pretty bad covid laryngitis and a mild sore throat. Doctors prescribed some steroid nasal spray and cough meds. I was negative in 8 days but very tired for two weeks.  I only had one booster shot last November so I didn’t have much protection left.  I will get the new booster later  in the fall.
                                                                          it did not kick up any MG symptoms thankfully because viral illness in the past caused Mg symptoms .  I am antibody positive MG for five years now.

                                                                        • #19986
                                                                          David S
                                                                          Participant

                                                                            Had my 2nd Negative test in 24 hours on Friday.

                                                                            Called to reschedule my IVIG – That’s another story.

                                                                            Scott

                                                                          • #20340
                                                                            June Robertson
                                                                            Participant

                                                                              I had 4 vaccinations and I wasn’t very sick. I immediately went on the antiviral Lagevrio which helped. But after it was over I was tired; polymyalgia rheumatica was triggered(it had previously come on after a bad ‘flu), then a few weeks later breathlessness and pneumonia. I don’t know how much blame to put on Covid. It’s now 2 months since I tested Covid clear but I am still very achey and not sleeping well due to pain. The MG is the least of it. Only 4 x 10 mgs of Mestinon daily.

                                                                            • #20365
                                                                              EDWARD CLAGHORN
                                                                              Participant

                                                                                I tested positive two days after returning from two weeks of work in Europe. Out of nowhere I felt like a truck had backed over me. I did take paxlovid and felt better within hours. Tired and sore for about a week or two then back to normal mg life again.

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