Long Journey to Diagnosis

By tjmjones1

1 min read

I am an 80-year-old woman who wasn’t diagnosed with MG until I was almost 75.

I have had symptoms of the disease since I was an older teenager, but no one ever diagnosed my problems. All my life I have had problems with my eyes, trouble focusing, double vision problems, choking and swallowing when I eat, and problems with my balance. My eyes even got so bad about 15 years ago that I couldn’t keep them open, and my eye doctor did surgery on my eyelids to help me see.

Yet no one still diagnosed me with MG. I even had to go to the hospital one time because I couldn’t breathe, I believe I was having an MG crisis. I just couldn’t get any air in and out of my lungs. They started treating me for heart failure, and COPD and the nebulizer solution respiratory therapy used had medication in it that actually made my MG worse.

Finally, five years ago, my primary care doctor sent me to see a neurologist, and within 10 minutes, he diagnosed me with MG. I am currently taking Mestinon and prednisone, and have been advised to start taking CellCept. The jury’s still out on whether I will start taking that drug. I’d love to hear from other MG patients who take CellCept.

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Sally Farrier Moderator & Contributor
tjmjones1... I too have had MG most of my life without diagnosis or treatment. But with all the same symptoms you spoke about. I am now 61years old and just got diagnosed at age 58. I do take Cellcept!! And have no issues with it. I see you wrote this in Feb. of this year. Did you decide to try the Cellcept or go with something else? How are you doing now? Hoping for the Best for you... ❄️Sally Farrier...Myasthenia-Gravis.com (team member).
mom2mba Member
I have been on CellCept since diagnosis in 2012. I feel it has helped and I have not had any side effects. It took a while and several crisis with intubations and adding IVIG every 3 weeks but I feel I am at my new normal. Not great but better than I was.
1. tjmjones1 Member
 <inline-mention username="mom2mba" user-id="4669012"/> I finally decided to start taking CellCept. I’ve only been taking it for about a week, so far I have not had any problems with it. I realize it takes 4 to 6 months for it to start working. My neurologist also increased my prednisone dose, which seems to be helping, so I’m doing somewhat better right now. I really appreciate your comment. It helped me a lot. I was interested to find out that you were diagnosed at a later age as well. I wish you well with your treatment for myasthenia gravis.
Jodi Enders Moderator & Contributor
 Were you constantly searching for a diagnosis all those decades you did not know what was causing your symptoms? Why 5 years ago were you suddenly referred to a neurologist? Your unfortunate situation of having treatments trigger your MG before being diagnosed is a prime example of the criticalness of spreading awareness for MG. I am personally on CellCept, and it has been what I believe was the game changer to head me into remission. I have only had one crisis. Immediately after being diagnosed and set up with a neurologist, I was put on prednisone, mestinon, a round of IVIG, and CellCept. The IVIG was before I started any drugs to keep me stable. After a year, I no longer needed the mestinon and tapered prednisone successfully while staying on the CellCept. I am currently on 1000mg per day of CellCept. I started at 2000mg a day. CellCept, like other drugs, should be slowly tapered to avoid triggering symptoms. So consider that if you plan to start it. I recommend starting at a lower dose (500mg) and increasing it if needed. CellCept usually causes some of the least severe side effects I see people mention compared to other treatments, such as prednisone. Prednisone is not ideal long term, which typically is what leads people to start an immunosuppressant. Do you know what type of MG you have? - Jodi, Team Member
kaitlynsutton Community Admin
@Don Bobincheck wrote this comment: "I can only feel your long journey for my short time 9(about 6 months) prior to diagnosis. I too went to my opthamalogist after having my eye lids raised and they started to close again fortunately she sent me for diagnosed MG got me to a neuroligist he immediately put me on heavy prednesone, mestinon (mycophenolate) and pyridostigmine plus a lot of vitamins now after 8 months of treatment I am almost in complete remission I do have very slight short flare ups but they do not last long I do still take my pills with moistened crackers to keep them from sticking in the area in back of my mouth where the valve that shuts off the nasal passage is located i just wanted tell you meds you stated worked well for me. - Don" 
1. TerriT Member
 My husband has recently been diagnosed with myasthenia. He has trouble swallowing pills - and I see others have to - so I keep a bottle of aerosol whip cream in the frig. A small dot to hold the pill on the spoon and then a layer over the top. He takes some of the whip off the spoon to coat his throat and then the rest of the mix. It works well. We were lucky to find a neuromuscular specialist 25 miles from us and he is cautious. Starting out at 500 mg Cellcept twice a day, and prednisone 20 mg daily, he's already on Mestinon. We will also include Calcium 600 IU to start and D3 2,000 IU daily. My husband has COPD as well so I am concerned about the 3 major drugs. He is having a lot of bronchial secretions since on the Mestinon. Anyone else have this problem and was another drug prescribed to alleviate the symptom? 
2. Sally Farrier Moderator & Contributor
 TerriT, Lol, I use cool whip. I put in in cereal also to aid in swallowing that. I started on 500 mg 2 times a day for about 2 years. Now for the last 3 months I am on 1000 mg 2 times a day, hoping I get some improvement, but it can take a while with cellcept to kick in good. Just FYI.... My husband & myself both on our Pulmonary Function Tests (PFT) have isolated reduction in the residual volume of uncertain clinical significance. Mine husband does not have MG. But does have COPD according to the pulmonologist. His reading Do show COPD. I however Do have MG and According to this same Pulmonologist. But this was my second PFT after an ER Dr was trying to give me medication for COPD and not treating the MG breathing crisis. My first PFT just showed the isolated reduction in the residual volume of uncertain clinical significance. 3 years earlier it was left as not enough to call MG breathing crisis but not enough to show not breathing crisis from MG. Isolated reduction in the residual volume of uncertain clinical significance. Does happen in MG but is often called COPD when it is not. Like I said this Er Dr was insisting on I had COPD, without any testing and going to treat it as such. My pharmacist refused to give me the prescription. As the COPD treatment did the total opposite of the Mestinon. My primary care physician after the Er visit & pharmacist ordered the PFT to double check if I did have COPD. The response was from the Pulmonologist about me was No evidence of asthma or copd, I copied and pasted this statement from MyChart online records. Best of luck!! Sally Farrier... <a href='https://myasthenia-gravis.com' target='_blank'>Myasthenia-Gravis.com</a> (team member).
Jess.Hall Community Admin
Hi <inline-mention username="tjmjones1" user-id="6657810"/> , it sounds like you have endured so much. My heart goes out to you. I am glad to see another community member has chimed in with their experience with CellCept. I truly hope you know our community is here for you – to provide support in any way we can. Please reach out anytime. Sending hugs. -Jessica, MG Team Member
RNEducator Member
I started CellCept in December, 2018 after experiencing breathing difficulties for several months. As an asthmatic, we had to rule it out as the cause of my shortness of breath. A cardiac workup ruled out issues with my heart, so an MG exacerbation was ruled in. I no longer have breathing issues and my pulmonary function tests have actually improved since I started CellCept. My white blood cell count remains normal and I have not experienced ANY infections since starting the medication. Think of CellCept as a tool to attack this disease from another direction. The Mestinon helps improve nerve function while the Prednisone is an immunosuppressant which has a different action on the immune system than the CellCept. I hope this aids you in deciding about your treatment.