[Amy]

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.

[Amy]

Hi Alice, my situation is similar to Mary’s. I have multiple autoimmune diseases, Sjogrens, Hashimoto’s, Raynauds, gluten intolerance (probably celiacs). I have been gluten free for many years so it is hard to tell now without a colon biopsy. I also am seronegative and have a positive SFEMG test. My double vision and droopy eyelids were the first to appear. I also have cancer and neuropathy. If your husband hasn’t been put on Mestinon that should be tried. I take it every 4 hours around the clock. If I miss a dose or am late my legs become so weak that I have trouble lifting them and tend to shuffle and have fallen a number of times. I have no trouble telling when it is time to take my mestinon dose. It even effects my breathing at night. Good luck. Amy

[Amy]

Hello, I have a blood clotting disorder and was told by both my hematologist and my neurologist that I absolutely can not have IVIG. I have had a couple of DVT’s and a PE. I had to take Lovenox injections for 6 months, I was extremely disappointed since it appears to be a treatment that has been fairly successful for a number of MG folks on this forum. Amy

[Amy]

Absolutely, I just started pool therapy, one on one with a therapist. The pool was too warm for me. When I got out of the pool, my legs felt like jello and I was completely exhausted after only 40 minutes. I am pretty sure it was a combination of the exercise and the heat since the same thing happens if I take a hot shower while just sitting on a shower bench. No more hot showers. I am hoping they can adjust the temperature in the pool since it is a single person pool and is about 95 degrees which is 20 degrees warmer than my community pool.

[Amy]

Hi Scott – I received my 4th Covid vaccination March 2nd. My 3rd shot was the end of Sept. i am lucky to have a very proactive primary care physician. The first 3 shots were Pfizer the 4th was Moderna I didn’t really react much to the pfizer vaccinations other than a sore arm with the 3rd booster. The 4th Mederna vaccine actually made me feel a little flu like for maybe 24 hours. Just more achy and stiff than normal. I got my 4th shot sort of by surprise. I went in for my wellness annual and the nurse taking my vitals said she noticed I was eligble for the 4th booster and asked me if I wanted it. I am on an immunosuppressant for MG and have metastatic cancer. They did make me wait 2 weeks after my booster before I could get my steroid shot for my degenerative arthritis.

[Amy]

Hello Maureen- it sounds a lot like the symptoms I have with my Sjogren’s dry eye. You could try a warm washcloth just in case your tear ducts are blocked. I see a neuro-opthalmologist twice a year. She helps me with both my MG eye symptoms and my dry eyes.
I also tell folks with dry eyes to ask about punctal plugs. Hope this information helps.

AmyB

[Amy]

Hi Jodi – i am particularily interested in learning how to combat the general fatigue I am feeling and ways to reduce the stress of having @ chronic illness.

I do have a question whether tinnitus is a symptom of MG? If it is, has anyone found relief from it?

Thanks AmyB

[Amy]

Hello, I have both horizontal and vertical diplopia. I was lucky to be referred to a wonderful and very patient neuro-opthalmologist and occupational therapist. Initially I had no idea I was seeing double. I was just super dizzy, had trouble walking and driving and also had light sensitivity. I was compensating by closing one eye and tilting my head until that stopped working. I tried patches and tape over one of my eye glass lenses. I would only see one image, but it gave me such an awful headache. The neuro-opthalmologist fitted me with prisms, but my eyes were constantly changing depending on how much I had been using my eye muscles to read that day. Working at a college library meant I was reading a lot. I started seeing OT to learn a few tricks to help me continue working. The best advice she gave me was rest my eyes and shopping at big box stores would be difficult. Your eyes are constantly scanning the shelves looking for items while your brain is trying to make sense of the double images. I would have these panic attacks every time I went grocery shopping and didn’t know why. I also attended a number of sessions at the Dizzy and Balance Center to improve my walking. I would weave when I walked. It also helped. I stopped driving at night almost immediately and try to limit my driving to the morning hours when my eyesight is at it’s best.

Things I found helpful:

I wear the darkest sunglasses I can find, sometimes even under bright lights indoors or a hazzy day.
Palming My eyes (OT technique for resting eyes, improving blood flow to eye muscles). I have used this technique on long roadtrips.
Using computer sofware for composing and reading (iphones and IPads with the newest OS have some nice accessibility features including text to speech)
Books on tape
Prisms – some days they work, some days they don’t
Dizzy and balance training by a certified therapist.

Amy

[Amy]

Hi Maureen,  you are not dumb.  This web forum is clumsy to navigate.  I’m having trouble too and I did beta testing of websites for a University for years.  The easiest way to private message Cindi would be, to click on her picture right above this message (cindi and her dog “Cindi DeHoff”.  You will get a larger picture with 3 boxes, add friend, public message, private message.  Click on Private message and send her your phone and email for the zoom group.   Hope this helps.  Amy

[Amy]

Hi Julie, Glad you are here. I have a diagnosis of mixed connective tissue disease on my chart also. I think it is the diagnosis doctors give you when they have no idea what you have, but you have something. We are the square peg that doesnt fit in their round hole. Amy

[Amy]

Good Morning, the more I read everyones story the more I realize how similar our stories are. It will be good to get the Seronegative group together. Maybe we can make a difference in actually advancing an FDA approved treatment for us that actually will put us in to remission, not just try to “manage” our symptoms.

[Amy]

Hi Maureen – you can download zoom app for Iphone I know. You will have to check for android. Amy

[Amy]

Hello, I ended up retiring at 53 and getting permanent disability a few years later. I worked as a project Manager in a University Library system. The majority of my job was on the computer. If I wasn’t on the computer I was walking all over campus meeting with faculty and staff. I found the last year of my career I needed to sleep through my lunch hour and take a nap in the afternoon. Besides the double vision, I started to stumble and fall. I met weekly with an OT trying to stay employeed. I learned a few tricks for the double vision, but in the end I was told I just needed to rest. At the same time my employer wanted to promote me into a different position that would be even more mentally and physically demanding. That was when I realized I couldn’t keep doing this. At this time my doctors had diagnosed me with a neuromuscular disorder, but because I was Seronegative I had not been given the diagnosis of MG. I miss my job and I miss the people. I also miss the financial security I had. I’m glad I wasn’t at work during COVID. Dealing with my illness has become my full-time job.

[Amy]

Paul, Immediately, after atarting Mestinon I could actually pick up my legs, prior to that I was shuffling my feet and had to use my arms to lift my legs to get into the car. I didnt notice my eyes right away because I have been wearing prisms to correct the double vision for 5 years. Unfortunately my eyes still fluctuate. My body tells me when it is time to take my next dose of Mestinon. I have the tell-tale signs of weakness in both biceps and upper thighs.

[Amy]

Hey Carol, i see this thread is running twice. I got an appointment with the neuro-team at Mayo in Rochester in Early Sept. They know I am seronegative/Sfemg+ and thank the Lord Mestinon actually works for me with no side effects. Unfortunately I am taking it every 4 hours 24 hours a day. I just recently was given a 180 mg ER Pyridostigmine (Mestinon) to cover me through the night so I am not getting up at midnight and 4 am. Another fly, I have spots on my left lung that need to be biopsied. My first bout with cancer is how I figured out steroids and strong chemo drugs help with my neuro-muscular symptons. The would give me a bump of steroids everytime I had chemo.The steroid helped with the fatigue and inflammation and the Adriamycin/Cytoxan coctail surpressed antibodies. I am guessing why the steroid is helping somewhat is that you have less inflammation and more energy, but are not on anything to supress your immune system, so your symptons are getting worse. Amy

[Amy]

Hi Dave,

I am so glad Soliris is working for you. I believe it is a very good drug.  It did stop my brothers immune system from attacking his blood cells, but he got the drug too late.  He had another rare illnes, A Typical Hemolytic Uremic Syndrome. It took a long time and two hospitals to finally come up with a treatment plan. By the time they started the infusions he had blood clots in his kidneys and lungs and eventually his heart.
Having the right care can mean life or death when you are dealing with a snowflake disease.  Also it is impossible to get your insurance to cover a drug, let alone a very expensive drug, unless you get the exact diagnosis the FDA   has approved the drug for.  Meanwhile you wait and hope you can hang on long enough until you can get approved.

[Amy]

Hi Dave, i believe you might be the first person to mention Solaris.  How many infusions of solaris did you have?  Did you do plex at the same time?  Did it help with any particular MG symptom?  You didnt say how long ago you took it, but I am wondering if the manufacturer is still helping patients cover the cost.  I had a younger brother on Solaris when it first became available.  It was a big deal to get it and at the time it was one of the top 10 most expensive drugs.  Sadly my brother did get Solaris, but not before he permanently damaged his heart, lungs and kidneys due to an Autoimmune disease that caused his blood to clot.  I am thinking Solaris might actually sort of reset your immune system and might be a good choice to try for folks that have multiple AI diseases.

[Amy]

Hi Norm & Alan,  I was surprised by my sleep apnea test, particularily because I rarely snore.  I have had breathing problems for a couple of years, but only when I exercise or over-exert myself.  I saw a pulmonologist who had me walk the halls with an O2 meter on my finger.  My Oxygen would drop into the 80’s, the alarm would go off, but once I sat and rested my O2 would go back up to 97% or higher.  My cardiologist and the pulmonologist both were perplexed.  Then last summer my fatigue got much worse. I had started Cellcept and thought that might be causing the tiredness.  I stopped the cellcept, but still was extremely tired.  My neurologist ordered a home sleep study.  I am waiting to go into the sleep clinic to try both a cpap and a bi-pap, meanwhile I am taking 60 mg of Mestinon at Midnight and 4 am., then every 4 hours during the day from 8 am – 8 pm. i was taking 90 mg every 4 hours during the day only, nothing at night.  I hate getting up during the night, after only a week my body just automatically knows it is time to take the Mestinon.  I am also starting to feel a little more rested.  I was hoping I could maybe resolve this issue with medication instead of a machine and get the XR so I wouldn’t have to get up during the night.  I am apprehensive about wearing a mask. Amy

ered pp

 

and the

[Amy]

Hi Cynthia,  Are you taking the potassium and magnesium for muscle cramps?  I wondered about Magnesium since I thought it was on the use with caution list for MG.  I use both a topical oil and a vitamin B complex that have Magnesium.  It has been the only thing to stop the awful cramps I get.  Walking it off never seems to help.  The worse ones are in my upper thigh muscles and forearms.  The pain is unbearable.  It feels like someone is twisting the muscle like they are wringing out a towel. The next day my muscles are so tight I can barely walk. I was never quite sure if muscle cramps were a symptom of MG or not.

[Amy]

Thanks Dave,  I currently am taking 360 mg daily.  90 mg 4 times a day, i am pretty sure I need to take it while I sleep at night because of my breathing.  To avoid having to get up during the night I want to try the XR tablet. My insurance does cover it but, it is a top tier drug and will cost me about $2 a pill.  Which isn’t too bad.  I have pretty decent retiree’s insurance through my former employer.  I know a couple of folks that go to Mexico for their insulin.

[Amy]

Hi Lisa,  you are Seronegative, there are still many neurologists out there that still believe Seronegative MG doesn’t exist.   There are a fair number of us out there that are positive with other gold standard MG tests who I believe either. produce too small number of antibodies to be detected or a completely different antibody that they don’t test for.  Neurology as a field tends to draw from a certain personality type that are not always the easiest to work with.  Remember you are the consumer and you deserve to get the care you need and should feel like you trust your doctor. Amy

[Amy]

Yes Bravo Alan,

Thank you for reminding me to look for the positive and live the best life I can.  Some days it is just harder than others.  Yesterday was just one of those days.  Amy

[Amy]

Hi Alan,  you are absolutely right about the tinnitus.  I barely notice it in the morning, but by the afternoon if I am tired it is a dull hissing sound that just gets louder as the evening wears on.  Just like my eyesight.  I just can’t read anymore in the evening.  I have no control over my double vision, even with prisms.  My Mestinon lasts maybe 3-4 hours per 90 mg.  I take 360 mg per day, plus 2000 mg of cellcept.  The further I get along this road the more fatigued I get.  I see my  neurologist next week to look at my 6 month cellcept use, which I don’t think has done much for me other than controlled some of my skin issues.  This really isn’t living. I hope you can find a way to live with the tinnitus.

[Amy]

Theresa, Thanks for the heads up. I was hoping to just get a swallowing test to make sure I am not aspirating too much.

I have a healthy skepticism of all doctors.