MemberJuly 16, 2022 at 7:09 am
I have posted for a while but I have an update. In place of Rituxan, a new neurologist started me on Hizentra SCIg in April. I responded within a month and felt much better. Then around June 1st, I began to feel worse and my breathing issues worsened. I developed a cough and while my scheduled pulmonary function test showed my diaphragm had strengthened a little, I was experiencing lower oxygen levels. My idiot pulmonologist (yes, I am scheduled to see a new one in 2 weeks) said the cough was from using my lungs more since the PFT showed improvement but that he “wished I could breathe better.” I asked what could we do and asked for a CT scan to see if I possibly had a problem. No to the CT scan and my lungs are fine so ask your neurologist. I got worse and finally went to the emergency room several days later. Diagnosis- pulmonary embolisms caused by the Hizentra (immunoglobulin causes blood clots in about 3 – 5% of recipients) and all it took was a CT scan. Now I’m on Eliquis to treat the blood clots and they want to try Hizentra again but that will require Eliquis to counter the blood clots. My new neurologist didn’t understand that when I told him I have a reaction to every drug, I wasn’t exaggerating. So now I add Hizentra to my list of IVIg, prednisone, imuran, cellcept, tacrolimus, Rituxan (severe dehydration, eye dryness that damaged my vision and possibly cause lung scarring – I’ll know more in 2 weeks) that all had serious side effects. Anyone else experiencing this?
MemberJuly 21, 2022 at 2:14 pm
MemberJuly 21, 2022 at 2:15 pm
I am Seronegative.
MemberOctober 17, 2022 at 4:13 pm
I am seronegative. I have been through many doctors over the last 10 + years. I have had all the diagnostics imaginable. I have the wonky eyes, severe shortness of breath, when I am tired my ears stop up and then my soft palate drops and I cannot speak normally. I can walk. I cannot hike because I cannot go up hills. I have extreme weakness in my legs.
Neurologist 1 — It is all in your head
Neurologist 2 — Prescribed mestinon and cellcept. The cellcept made me gain 50 pounds and my blood pressure and blood sugar rose to dangerous levels.
Neurologist 3 — Changed me to immuran. My liver doubled in size and I started throwing abnormal liver values. I quit taking it. When I got to the next appointment, Neurologist 3 had skipped town to avoid some issue. Which led me to
Neurologist 4 — He found out that I had stopped taking the immune suppressant drugs. He wouldn’t get near me. He held his hands in a position to indicate that I should stay away. I don’t remember everything that he said. The main thing that I remember is him shouting “You will die! You will die!” That didn’t make my day. But I did get referred to
Neurologist 5 — She is at a major medical school hospital. She increased my mestinon. She also sent me for about a million tests. I go back soon. I think that IVIG is next on the plan.
The best thing I got out of her so far is that I was referred to an eyelid surgeon. She did a bunch of tests and agreed that I could not see out. She did a “Silicone Frontalis Lift”. What actually happened in surgery is that she attached a silicone thing to my eyelids. Then that thing was run up under my eyelid and pushed under the “frontalis” muscle which is the one that raises your eyebrows. She stitched the thing on each eyelid muscle to the underside of its frontalis muscle. I have actually learned how to use my eyebrow muscles to open my eyes without thinking about it. It was supposed to be done with a sedative and a local anesthetic, but I ended up totally knocked out. I think that I asked too many questions.
I looked like a prize fighter that lost badly after the surgery. Now, I can’t even see the scar on the eyelids. There is a funny bump above the eyelids. I cover it with bangs.
Note: in case somebody doesn’t know, gas anesthesia is considered really bad for MG patients. They often don’t start breathing on their own once the gas is off. I had 2 knee replacements using just an epidural and a low dose of propofol. But that is a story for another day.
MemberOctober 21, 2022 at 10:26 pm
Diagnosed seronegative 13 years ago. Mestinon was fine for years. Past three on immunosuppression allowing a significant decrease in mestinon.
MemberOctober 21, 2022 at 10:30 pm
I am. Didnt find out inti 2 years into it. I take 60mg of menstion 3 times a day. Im alway tired and i seem to gind new problems with my body. Only to get no answers.
MemberOctober 26, 2022 at 7:46 pm
I am seronegative, diagnosed 2021 after physical exam and 2 weeks later myasthenia crisis. Since then I have been hospitalized 4 more times with exacerbation/ pending crisis ( with the last one just 2 weeks ago) if not for the quick action of the doctors with BIPap plasmapheresis and IVIG would definitely turned into crisis. I am currently on prednisone,cellcept, and retuxan and I am currently being set up for Plasmapheresis every week. My symptoms include. Neck weakness, eye ptosis and double vision, problems with swallowing, voice issues, arm/hand/ shoulder weakness and severe leg weakness. Many of my symptoms went away with just the Retuxan and the prednisone, but my neurologist left to do research and my new neurologist thought I looked so good decided to put me on maintenance which is have the dose of retuxan and titrations off prednisone. The result was another hospitalization. I am back up to my regular dosage but it won’t take affect for at least another 5 weeks or so. Plasmapheresis is the only other thing that works in the interim. Theresa I can’t wait for your zoom support group.
MemberDecember 29, 2022 at 4:14 am
I am seronegative. I was diagnosed a year ago. I currently take 180 mg of pyridostigmine Xr twice daily. I have issues with my voice, weakness, swallowing, and occasional breathing. Lately I have had issues with double vision. If you are doing a zoom meeting still I would definitely be interested in joining if it is not too full for one more person. Most people in my area have never heard of MG and I don’t have the voice to explain it to them.
MemberJanuary 2, 2023 at 1:21 am
Hi, I’m Catherine. I was diagnosed AChR and Musk negative and RyR (Ryanodine Receptor) positive in 1/21, via new blood test which became available at Athena (?) labs. I was diagnosed with Reynaud’s in my mid thirties . I am now 69 yo. I was started on IVIG (Privagen) every 28 days and 180 mgs of Pyridostigmine every day. (It is interesting to note, the IVIG immunotherapy drugs are made for Seropositive MG patients according to my Neurologist. There are no specific treatments yet for Seronegative MG patients !) I have also been diagnosed with Obstructive Sleep Apnea, but am unable to sleep with the nose pillow and strap. My first symptoms were systemic fatigue and blurry vision. I have moved up to 360 mgs Pyridostigmine per day. I experience severe abdominal muscle cramps, occasional difficulty swallowing and weakening of my hands and legs. In the last two months I have lost the muscle ability to speak after over exerting myself. Recently, my IVIG was changed to Octagam and my dose increased from 60 to 80mgs (over two days) every 28 days. I am feeling actually much better with this protocol.
Makes me wonder how good I could feel with a protocol actually designed for my illness!
MemberJanuary 5, 2023 at 10:14 pm
I’m sorry. That was from 60 to 80 grams in my treatment, not mgs.
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