Myasthenia gravis; Making an informed decision for my Treatment Path

Hello @blondie13 I’m glad you’re sounding so upbeat! It’s the best way to tackle autoimmune diseases! You may need to call the doctor’s office and make an appointment to discuss your possible diagnosis. Your doctor may be reaching out to other doctors, also, to determine the best plan of care. They may also want to transfer your care to a rheumatologist who are becoming specialists in autoimmune disease.
I’ve posted the link to an older discussion that is all about MG. Don’t mind that it’s old, people’s experiences haven’t changed.
https://connect.mayoclinic.org/discussion/hi-everyone-let-me-begin-by-telling-you-some-of-my-story/
I’ll also ask these members to join the conversation: @pmci @lucylulu5280 @pikuptruk @ellen307 .
Will you come back and tell me what you learn?

Hello! I was recently diagnosed with Musk MG. My PCP ordered the antibody blood work and referred me to a neurologist. I saw the neurologist within two weeks. My symptoms were only ocular. I believe she would have seen me ASAP had my symptoms been more severe. So far, I haven’t had a flare for more than 6 months, and I don’t take any medication. I do follow a very strict vegan/gluten free diet. I can’t say for certain that that has helped, but I’m sticking to it for now. Stay positive, don’t be afraid to ask questions, and don’t be afraid to live your life. MG symptoms can be managed!

@blondie13, I add my welcome. I moved your question about myasthenia gravis to this existing discussion:
– Myasthenia gravis; Making an informed decision for my Treatment Path https://connect.mayoclinic.org/discussion/mg-trestment-path/

I did this so you can read the posts by and connect with @carrie13 @Erinmfs @asquires @ellen307 @mgmember @skhollandmt @pmdwarrior

Hi @becsbuddy

Thanks for your kind reply. I guess I’m just being impatient. 🙂 Since I’ve seen the test result I’m just anxious for my neurologist to confirm it.

@colleenyoung Thank you! I appreciate the reply and the link! 🙂

Hi Ellen!
I apologize profusely for not replying to your request…thankfully I read it when looking for information regarding COVID and MG.
In September, 2019 I was admitted to MassGen in Boston, which in my opinion is a premiere hospital. I went to have exploratory surgery because I had a predominant taste of salt in my mouth all the time. I hate salt! Everything tasted like pure salt and even drinking water choked me it was so salty. I begin to lose a tremendous amount of weight and became malnourished. At the same time, I had been battling a constant cough that I’ve had for 15 years and no one could figure out the cause. I’d had so many appointments with specialists ranging from: eyes, ears, nose, throat, stomach, et cetera. The exploratory surgery specifically was an endoscopy. During the surgery, one of the doctors noticed from my mri that my thymus gland looked as if it were beginning to grow so a discussion ensued. A team of doctors couldn’t decide what was causing the cough and salt taste so one thing they suggested was to remove my thymus. This was no small thing…they begin by cracking open your chest as they do during open heart surgery. I didn’t have time to worry about this because they did it two days after my exploratory which was great because I probably wouldn’t have done it. The surgeon inserted a feeding tube also as I was very malnourished. Let’s just say, coughing incessantly after this surgery was in a word horrible. In the end, I still had the salt taste and cough.
Over the following two years the salt taste finally subsided!! We still have no answers as to why but I’m just glad it’s gone. I never liked chocolate and now I do and many things I used to love like pasta and bread I don’t really like any longer? I finally had my feeding tube removed after 9 months but it had to be done surgically. I was just happy it was gone. I had a fairly good summer in 2021. In October we were moving back from our summer home and I did a lot of packing, organizing et cetera. All summer we had lots of company and I cooked, cleaned, changed linens daily and planned fun things for our guests and begin to really get tired after dinner…highly unusual for me. Then one night when climbing the stairs to our bedroom I told my husband I didn’t think I could do it. I was scared and he just helped me and I went to bed. I tried to get up during the night and couldn’t use my hands at all! It was as if someone inflated them and they wouldn’t move. I woke my husband and he helped me into the bathroom…then I tried to take a drink and couldn’t swallow. By morning my mouth on the left side drooped. I then thought I had a stroke. I called my doctor and he got me right in. He thought I had Bell’s palsy and everything went downhill from there. He thought maybe my hands had problems that required a hand specialists opinion. I got into one within three weeks but in the meantime had begun losing lots of weight again as I couldn’t swallow! The hand surgeon took one look at my hands and told me I had a much bigger problem than my hands. He drew blood, took X-rays and pulled strings to get me into a neuro-muscular diagnostic doctor the next day after his regular hours. The hand surgeon guessed it was als or md. The neuro-muscular doctor was unbelievable…he examined me for 2 1/2 hours and ruled out als immediately so we were very grateful. The alternatives it could be were very scary as well. I had to wait over two weeks for all the blood tests results to come back and when they did, they did not support any diseases he thought I had. He thought the steroids my doctor had put me on had skewed the results so he redid all the bloodwork…now it’s the middle of December!! The steroids were causing me loads of problems so they needed to stop them. After waiting 3 more weeks for results I was diagnosed with myasthenia Gravis. My pcp only heard about mg in college and never in his 36 years in practice. He began to study as much information as he could get. He, along with the diagnostic genius, recommended a neurologist who started me on mestinon and Imuran. After 10 months of treatment I can now swallow, my mouth is better and my right hand is doing great but my left hand is taking its time. During all of this the neurologist always is so puzzled that I have mg as he feels I’m a unlikely candidate and didn’t have the eye drooping and relatively isolated leg involvement. Now he thinks it could be that during the thymus surgery a piece of the thymus might have dislodged into my body and caused the mg. He wants me to have the thymus removal procedure done again to see if that’s what happened. I’m very opposed to this. Sorry I got so carried away but living with this has changed my life in so many ways that I find it irritating, depressing and puzzling. I’m still coughing so that’s a huge consideration also. Hope you are doing well!! Peace, Carrie

Hi @lucylulu5280

Thank you for sharing your experience. I’ve been experiencing leg weakness, among other things, for years. I don’t have any ocular symptoms and my neurologist suspected that I have small fiber neuropathy, but wanted to rule out myasthenia gravis. I sure glad she ordered the antibody bloodwork, but I’m just anxious waiting for the follow-up from her. She’s booked 4 months out so I’m hoping I’ll hear something before then.

Thanks again! 🙂

Hi Lucylulu,
I’m sorry you’ve had to wait for test results and for an appointment. I’d call your neurologist and ask to be put on a cancellation list…four months is way too long to wait. I know everyone is busy but hope you get treated before anything else happens. Terrible to say, but we must advocate for ourselves. Good Luck!

Quick answer ... there are a lot of MG clueless doctors and three local "NEUROLOGISTS" at the local BANNER hospital ... who could not diagnose MG ... so they gave me a CODE RED when they did MRI and CATSCAN tests under sedation (I was moving and choking too much for their X-RAYS). So they slit my throat (Trach and Peg) and sent me to a DIGNITY hospital in another town ... where more MG clueless doctors failed. I was finally diagnosed by their third floor nurse, who had met other patients with my symptoms. She talked the hospital into a NEURO CONSULT, and that got me my 6 ANTIBODY tests .. all through the roof scores.

You live in Maine ...BUT ... find and join a MG support group ... from anywhere. I belong to four MG SUPPORT GROUPS who ZOOM ... two in Arizona, one in Minneapolis, and one at http://www.myaware.org in London. They are GREAT. The moderator keeps list of local MG SAVY doctors, clinics, and testing labs. You can ask in ZOOM, any question you want ... and one of your fellow MG sufferers can tell you what works and does not work for them. Some are not on transfusions or IVIGs like me any more. Others are trying VYVART, SOLARIS, IVIG, or that PLASMA fairisis or what ever it's called. Your support group from any state can answer your questions. There are a lot of great hospitals on the Northeast coast, so your fellow ZOOMers and the group moderator can answer any question or refer you to someone who can. Also all 4 of my support groups have had guest speakers from Axion and other companies, who can present info or answer any of your questions also

I have been in REMISSION since Christmas 2020 ... after an 8 months search for a diagnosis from MG clueless doctors and hospitals. I am currently on CELLCEPT and MESTINON ...

I was on nasty steriods Prednisone and statins. They are are REALLY BAD, as they gave me MEDICALLY INDUCED DIABETES II and acute ONSET INSOMNIA. So try to get tapered off Prednisone as soon as possible. I am close to being ME AGAIN. Hope you will be better soon too.

PS. TALK TO your anesthesiologist in your family. Any sedation to an MG patient can be DEADLY. Keep that person in your close medical loop ... as he can SAVE YOUR LIFE. I died and had a CODE RED called on me ... after they sedated me with PROPOFOL and ROCURONIUM for MRI and CATSCAN tests. The official cause of my passing (and 5 months in five hospitals) was ACUTE HYPERCAPNIC RESPIRATORY FAILURE due to an OVERDOSE OF ANESTHESIA. When sedation is given to an undiagnosed MG patient (whose diaphragm breathing is already suppressed), you are being given a sedative dosage of 5 to 10 times the strength given to a normal patient. Also with out the correct sedative reversal agent for an MG patient of SUGAMMADEX, you could arrive in PAPC not breathing and unresponsive too ... and get a CODE RED call. So keep that family member in your LOOP!!!!

HELLO Becky the nurse ....

Until I was diagnosed with MYASTHENIA GRAVIS, after an 8 month search for a diagnosis, I had never taken ANY MEDS, unless a cough drop for a sore, overused church singing group voice. SO I HAVE BEEN GOOGLING LIKE CRAZY ... to be medically informed on MEDS and procedures.

I am close to being ME AGAIN, except for ACUTE ONSET INSOMNIA, which Prednisone, and possibly other meds cause. I have been in REMISSION since Christmas 2020, after 5 months in 5 hospitals. I have had only the original diagnosis treatment of 5 hours of 5 days of IVIG ... and am on 180 MGs of MESTINON and 2000 MGs of CELLCEPT daily, and got that dangerous/nasty PREDNISONE KILLED. So I am religiously taking my meds to stay in RECESSION ... but one does not really know what SIDE EFFECTS are causing what issues, as I am still on 13 different meds of over 5500 MGS daily, including blood thinners and anticlots, even though I aced the CARDIAC CATH just fine, but have insomnia, a cold right leg at night, and instantly bleed, from scrapes in arms and exposed legs, when out gardening and trimming sharp plants. So I am being super careful, as I have no way of knowing what MEDICATION is hurting me and what MEDICATION is saving me. I consider myself lucky .. as several MG patients in my four support groups need to use SOLARIS, VYVART, IVIG or that PLASMA--- still. So why am I better ... when my fellow MG patients suffer worse ... is it my 2000 MGs of CELLCEPT, that other don't usually mention taking ???

My hospital nurses for 5 months in 5 hospitals WERE TERRIFIC. The nurses tried to find answers to as many questions as I could write, as I had to use paper pads or white dry erase boards for any communicating, as the doctors gave me TOBRAMYCIN OTTOTOXICITY so had no hearing for 4 months .... and no voice either ...due to a slit throat trach ... because they did not recognize my MG throat breathing and chewing symptoms ... for what they really were. Because I arrived in the first hospital on 2-4-2020, pre CORONA PLAGUE, which arrived very soon after, no doctor would visit me in my hospital rooms, except at 5 or 6 am, for three minutes, if I had had a bad insomnia night and was still awake ... and quick with a pen on paper .. while he was getting on blue gloves.

So THANKS for being a nurse and patient with patients. Because I am taking so many MEDS ... it is hard to know what is keeping me SAFE and what is giving me SIDE EFFECTS ....