July 12, 2021 at 5:22 pm #16456Michelle GonzabaParticipant
Before my medical team diagnosed me with MG, they put me through a series of tests that ended up having nothing to do with MG. I remember doing some sort of swallowing test where I stood in front of a scanner (I think) and drank a bubbly drink. This test was in response to my mouth and swallowing weakness.
What kinds of tests did your doctor do before they knew it was MG? Did any of the tests help? What was your experience like?
July 21, 2021 at 12:31 pm #16550Rick FedermannParticipant
Because I test negative for MG antibodies, I was subjected to multiple lab tests and CT/MRI scans. Without a definitive cause, things like brain cancer were considered possibilities. Meanwhile, I spent hours doing online research, which helped me to curtail the seemingly unending testing.
When the neurologist was mostly confident that I had MG, he wanted to do an EMG test to increase his confidence level. I had an EMG test for a previous situation and it was a very painful experience. I asked him if the result of the EMG test, positive or negative, would change his decision to proceed with MG treatment. “No.”
So I refused the EMG test and began taking mestinon. The results were immediate, and it was then clear that MG was indeed to culprit.
I suggest being your own advocate. While in the diagnosis phase, do research and understand the potential causes, available tests and potential outcomes. Medical providers are under constant threat of employment termination, lawsuits and license suspension if they make mistakes. They will err on the side of over-testing. But you are in the driver’s seat regarding what you will or will not do. And my providers have always reacted positively when I take some of the ownership of what we are doing, approaching it as a collaborative team effort.
July 21, 2021 at 7:36 pm #16554Kevin J FunaroParticipant
Fortunately my acetylcholine receptor binding antibody tests came back positive. The neurologist gave me first mestinon followed by low dose prednisone working up to 40 mg. Right now it 20mg. Muscles are very sore in legs but the eyes are better. Michelle from your experience is this normal in the beginning?
July 22, 2021 at 1:41 am #16565John G FayParticipant
My diagnosis was fairly straightforward. I had twitching left eye lid, upper and lower. Would have thought nothing of it except it was continuing for 3 weeks. Went to my PCP and saw the PA. She had me do some facial exercises and did the “cold compress” test on my eyes. She ordered bloodwork that came back positive and referred me to the Neuromuscular Services at Mass General. The docs there confirmed the MG and put me on 60mg/day mestinon. I had a chest scan too that was neg. for a tumor. I had a 6 month follow-up scheduled but I began to experience slurred speech and some chewing weakness, no swallowing issues. They got me in for an exam and added 20mg of prednisone/day to the mestinon. I still take both and currently take 1000mg /day of Cellcept (not a fan) after 2 months. Before I went on the Cellcept, I was on an increasing dosage regimen of azithioprine, but after 5 weeks had a severe allergic reaction to it (high fever, 105.9 and 3 days in the hospital). The docs switched me to the mycophenolate (Cellcept). I’ve been taking it for 2 months. My legs feel like logs. Jury’s out, but I agree with being your own advocate and this forum is helpful as is the MGNews website. Thanks for hosting.
July 24, 2021 at 11:09 am #16584
Be lucky that you are only on 1000 mg of CELLCEPT. I am on 200o mg of CELLCEPT as well as some MESTINON. My MG seems in remission … and all my symptoms are gone except fatigue and sore biceps …. but I have SEVERE ONSET INSOMNIA. It takes me hours to fall asleep. I thought that once I got off the PREDNISONE that caused my INSOMNIA as well as DIABETES too …. that I never ever had before, …… that my sleep troubles would be gone.
NO LUCK. Some one told me that CELLCEPT causes INSOMNIA worse that PREDNISONE does. I have been on CELLCEPT and MESTINON since 3-24-2020 diagnosis … and PREDNISONE from same day … until I had a severe Septic Bursitis MG crisis in my left arm in November 2020 and the two hospital stopped the PREDNISONE. My immune system was toast from the immune suppressant drugs and my body could not same me from infection.
So I try to be careful and keep asking questions .. as doctors do not know anything about MG … and give you STATINS, BETA BLOCKERS, and STEROIDS … that your MG doctor and MG websites say is potentially dangerous if you have MG. Also PREDNISONE and ATORVASTATIN gave me also DIABETES. You take something to lower your blood sugar … and unknown to you, another doctor’s meds have the side effect of raising your blood sugar …. and creating greater risks to MG patients already suffering.
July 26, 2021 at 8:54 pm #16588John G FayParticipant
Jonathan A, thanks for the input and follow up. I am going to discuss Cellcept at my next Neuromuscular visit in Sept. I’ve only been on it for two months and have been told it can take up to two years to show effectiveness. They will be discussing an increase in Cellcept to get me off the prednisone. I am not sure now if I want that. Many of the side effects of mycophenolate seem to be similar/mimic MG symptoms. I cannot differentiate if my MG symptoms are worsening or it’s the med.
Have you seen this article from NIH?: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2646649/
Any thoughts, anyone?
July 23, 2021 at 8:07 pm #16576John UlfelderParticipant
I showed up at the emergency room with drooping eyelids and inability to swallow ;iquids or solids (not even my own saliva) but no weakness in my feet, legs, arms or hands. Immediately suspected myasthenia gravis. Started me on mestadon but it didn’t help my symptoms. Blood tests for anti-bodies for MG and Miller-Fisher Syndrome were negative, CT scans and MRI didn’t turn up any abnormalities or tumors, EMG on arms and torso were normal, subsequent EMG on face (not painful or particularly uncomfortable) also negative. Neurologist still working on assumption it is MG even though we don’t have a definitive diagnosis from all the tests. Plan to repeat the blood tests in a few more months to allow anti-bodies to build up again after IVIG and plasmapheris treatments. Sure would be nice to have some definitive diagnosis! My wife is my advocate and a damn good one.
July 25, 2021 at 11:42 pm #16589Lou VenemaParticipant
I had my diagnosis and confirmation in less than a month. My optometrist checked my double vision in my left eye and sent me to a nuer-opthamologist. He performed several tests and referred me for a blood test. It came back positive. That had me very concerned for a while as I had just left a where where I was destroying nerve agent and took the same test every year. The work tests were only to verify my initial Ach levels and then compare them every year. There was only slight changes in 6 years.
I went to my neurologist, he confirmed the test results. My VA PCP referred me to thier neurology. Then I was referred to Indiana University to their head neurologist. We had quite a discussion about what had been happening at the VA, results of their treatments and results and help the VA team change my treatment outlook.
I bounced around a bit at the VA but after 6 months I was assigned to a permanent care taker, I get a new one every three years as the cycle of students come over from IU. My supervising neurologist was changed by a fluke in t he scheduling. I found the new one was from the hospital and medical center where I have normal care. My neurologist there and my PC doctor both new him well and that helped a lot.
It took about a year to get my IVIG started. So far, it is the only medication that has had any long term response. Occasionally I have a bad day and I take 1 or 2 Mestinon. That helps but that is about all I dare take.
That may seem like a long time for treatment but it is pretty fast in VA time. Once it was determined to use IVIG things happened quickly. There was no time lost for approvals like some people have with their insurance.
Best wishes to all, I hope you treatment works well for you.
July 26, 2021 at 8:53 pm #16591
You are extremely LUCKY for a quick diagnosis. It took me 8 months and finally a floor nurse diagnosed me …. and the next day they started me on 5 days of IVIG treatment.
My CIGNA doctors were TOTALLY CLUELESS and could not diagnose my MYASTHENIA GRAVIS … so CIGNA figured … oh the patient forms says he is old …. he must have an old person’s disease …. totally IGNORING my 8 or 9 M.G. symptoms. So CIGNA referred me to a Foot doctor and an OPTOMETRIST to try to prove to themselves that I had old person’s DIABETES. The OPTOMETRIST said NO … that I had a better chance of getting cataracts than diabetes …. and this was after I already had all the symptoms showing of Ocular MYASTHENIA GRAVIS … including droopy eyelids, competing eyeballs, not wanting to drive at night due to “CHRISTMAS STAR light rays” from every street light. I even had to hold up my eyelids for his technician to look into my eyes on her viewing machine …. like they have in DMV license offices. At that point I would have given anything for my referral OPTOMETRIST … to have referred me to a NEURO for blood tests.
I finally in desperation went to a hospital urgent care, three NEUROLOGISTS examined me, and were totally clueless in their guesses for almost a month. They sent me in a late night ambulance to a second hospital of clueless doctors. After 4 weeks, a floor nurse recognized all my MG symptoms from her other patients and got me IVIG treatments. I have been in remission since 3-24-2020 ..with only one M.G. CRISIS. I had been taking over 2000mgs of CELLCEPT daily … so my toasted immune system … could not protect me from left arm acute septic bursitis swelling. So I hope you continue to improve and you have doctors finally that know M.G.
July 26, 2021 at 8:58 pm #16583
You guys seem to be very lucky. You have found out what tests they did to you. I was undiagnosed with general MYASTHENIA GRAVIS … starting with hand and calf leg weakness first along with all the Ocular MG symptoms. The doctors in the hospital did not tell me anything, rarely saw them (usually if at all …. 6am walking out the door on a quick turn) and the nurses could only answer all my med questions.
Now my new MYASTHENIA GRAVIS doctor … I found …. He actually let me set up an appointment and a followup to see him …. “a real, live doctor” in person (the consulting hospital neurologist that prescribed my Prednisone, Mestinon and Cellcept only does ZOOM and phone calls .. so I never met him in person). So now my new MG and me are facing roadblocks … We can get no reports from the second hospital that finally had a nurse that finally diagnosed me with MG …. after week 4 of my stay at the second hospital.
I actually signed up for ALL STRIPES to help in searching for tests the five hospitals did on me …… if I was ever tested for MG or not. I had 5 days of IVIG treatment and chest X rays after the first hospital gave me three types of PNEUMONIA. I do not remember getting a Tensilon ?? or any wired muscle tests.
Finally my weekly visiting nurse let me in on a little secret of the MEDICAL COMMUNITY .. and how you can find a way to get into corporate health portholes and find consultant and discharge papers, x ray results, and lists of Morphine, diuretics, anesthesias, antibiotics (that gave me 4 months of hearing loss that I was fed in the hospitals) and 60 other drugs. So 11 months after my IVIG treatment I am finally getting some of my test results to give to my MG doctor … who has been put off also. This week I finally found the three Acetylcholine Antibodies tests … all high … BINDING 3.5 8.1 8.7 Blocking 59% 50% Modulating 81% as well as CO2 and Ammonia levels way high also. Now I need to get these to my new MG doctor for translation along with the X ray reports that seem to indicate they never went looking for a THYMUS … as they were interested more … it seems in the three PNEUMONIAS that I contracted in ICU after newly found out (to me) my collapsed right lung, ACUTE RESPIRATORY FAILURE, and being dead …. that they did not tell me anything about either.
So it is SUPER IMPORTANT to locate those hospital medical papers any way you can .. as you will need them for your own doctors. My new doctors wrote me up ….. to go get lab tests done a SONORA LABS Testing. SONORA has a great patient PORTAL. They tell you the results of all your tests, as well as which are low and which are too high … as well as why some of your test scores are off and why. Doctors only tell you to fast from food …. SONORA tells you about PSA, Blood Sugar, and other tests. There are also “ACTIVITIES” … besides no food or drink, such as sex, exercise, hand jobs (to make ones self sleepy when have rampant insomnia from your meds), bike riding, a DRE exam, or motorcycle riding that YOU DO NOT DO …. before some of your tests …. as it will skew the results …. just like the neurologist that took ” NINE ATTEMPTS” in a short time frame to do a Lumbar Puncture on my back. When I went to the medical websites … I went to find out …after the fact .. what was a lumbar Puncture …. as I was never told I got one. the websites say only do three PUNCTURE attempts per day … any more than three tries in a day .. will screw up your test results.
But the total welcoming surprise to me was ….. SONORA LABS had not only the tests results for the 9 vials of blood I gave them a few days earlier in 2021…. SONORA LABS also had on my own patient portal 18 tests and their results/analysis …. for blood workup and blood draws at three of the five hospitals I was confined in from almost a year earlier ….. from 2020. The three hospitals took my blood, had SONORA do the tests, and now 11 months later I am finally finding a way to know about the tests they did on me and what the results were from SONORA LABS …. not from the three hospitals or their doctors who removed my blood.
SO GET THE TEST RESULTS ANY WAY YOU CAN … your own doctors will thank you … as they are getting blocked also. Also beware of MRI’s and Cat Scans. I had ACUTE MYASTHENIA GRAVIS that was undiagnosed with all the MG symptoms … including trouble swallowing, phegm in my mouth, trouble being flat on my back, an unsupported neck, and having a weak breathing MG diaphragm muscle. They gave me anesthesia for the tests to SUPPRESS MY BREATHING and keep me still …. totally clueless that I was already in breathing distress. When I was taken to post anesthesia recovery care, I did not come out of it … the nurse called a CODE STRIKE. I was finally resuscitated and sent to ICU …where I contracted three types of PNEUMONIA, was given ANTIBIOTICS, and from that … had total hearing loss for 4 months from the side effects of those medications. I found all those reports 11 months later …. when my home care nurse told me how I could find “PORTHOLES” … to finally find the reports and test results of what they did to me, and why I arrived at a second hospital sedated and in bed wrist restraints late one night. The newly discovered consulting and discharge papers mentioned “self ex-tubation” at times. No wonder I was having nightmares.
Also those same reports said almost always .. that the patient information was taken from the medical charts. Reading further into the newly discovered consulting reports … one would find that I was either …. sedated … intubated ….. or groggy for almost the entire month of February 2020 at the first of three hospitals. Also my brother … Paul being Paul … took phone photos of my situation … so know I know about the continuing nightmares at that hospital and their reason. All those air hoses and IV’s around my face, neck, and arms …. and being wrist restrained to to my bed rails with white nylon luggage straps.
August 28, 2021 at 8:34 pm #16951SamaraParticipant
I was diagnosed in a rather old-fashioned way. After a few terrifying months, my PCP referred me to a neurologist who referred me to another neurologist that specializes in muscular disorders. The Neuro did a quick exam, listened to my description of my symptoms, and said “I think I know what you have. Try mestinon and if it has any effect on your symptoms, you have MG. It doesn’t work on anything else”. The mestinon did help (for a few hours, and, of course, it stopped being enough as my symptoms got worse) and thus I was diagnosed and treated.
Several years later, I got a new Neuro who had me tested for the acetylcholine receptor antibodies. That test confirmed the diagnosis, but really, the “mestinon test” did the trick.
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