[Amy]

Hello, I get my vitamin D tested a couple times a year. I take a D supplement every day. About 2000 iu. I was told by my doctor that folks with autoimmune diseases often have low D.

[Amy]

Hello, I get my vitamin D tested a couple times a year. I take a D supplement every day. About 2000 iu. I was told by my doctor that folks with autoimmune diseases often have low D.

[Amy]

Good Morning Bernadette,  I am being treated.  I started Mestinon in 2018 and recently started Cellcept.  I am antibody negative, but had a positive SFEMG test and initially responded well to Mestinon.  I believe my first symptom was also my eyes, double vision.  I am hoping to start more discussions with other folks that are Seronegative and what they have discovered.  I have already heard from one other Seronegative person that has plex as part of her treatment protocol.  I think we can learn a lot from each other.

[Amy]

Hi BBernadette, it is nice to meet you.  I am sure you know being seronegative comes with a whole host of problems, from diagnosis to treatment.  Even finding a neurologist that believes  in Seronegative patients can be a daunting.

Can I ask what your presenting symptom was and what tests were given to help with the diagnosis?

[Amy]

Hi Nan, i just figure out how to get my ipad to read my emails. I too am excited to meet other Seronegative MG folks. I have my first appt with an ENT about my swallowing issues 3/2. I choke on both solids and liquids, not all the time, but frequently enough my family keeps bugging me about it. I also have trouble chewing meat or anything tough unless I cut it up into really small pieces. Do you have any problems with excess phlegm or a runny nose?

[Amy]

Maureen, I am so sorry. I have trouble with spasticity and leg cramps. I was recently approved for medicinal cannabis in Minnesota. I use a oral liquid that has helped with pain and sleep.
I think all of us Seronegative folks at one time have experienced the feeling we have been shelved by our doctors. If they can’t prove it with a test you don’t have it. I remember almost being in tears telling the doctor, I don’t care what you call it, I just need to feel better. So do something or I need to find someone that will. I had to get out of the mindset that the doctor was always right and remember that I deserved to get the care I needed to feel better. Don’t give up. Amy

[Amy]

Cyndi & Theresa –

I also have SOB upon exertion. Do your O2 stat’s drop significantly? Have you seen a pulmonologist or gone to a sleep clinic?

[Amy]

Good Morning, I had to stop reading last night. My eyes are terrible in the evening. Currently I am seeing 2 neurologists and a neuro-opthalmologist. I am seeing a doctor at the U of Minnesota Health Centet for my MG. I did have the option of going to Mayo in Rochester. I went there for my Sjogrens and breast cancer. I was much more mobile than and my vision was better. It is a big place. I still may end up going there.

I have had the 3 day iv solu-medrol steroid and a few of the taper packs that help for a few days, but it messes with my diabetes and causes such fluid retention that my doctors hesitate to give steroids to me.
Unfortunately we discussed IVIG, but because I have had multiple blot clots, in my lungs and leg, I cant have it.

I am wondering about PLEX. I don’t have many options because of my medical history.

Ironically I felt fantastic during my chemotherapy for my breast cancer. I was on Adriamycin/Cytoxan. I hope somebody will mention a treatment option I can pursue.

[Amy]

Hi Theresa, my SFEMG test was overwhelmingly positive. The doctor stopped after 18 pairs. All 18 pairr were positive, 2 of them were completely blocked. I am sure that isn’t normal, maybe not even for MG. I live in Mn, but would love to zoom with other Seronegative MG folks. I take 90 mg Mestinon 4 x day plus 2000 mg of Cellcept. I have only been on the cellcept for about 3.5 months, but I don’t think it is working. I would love to hear what others are doing and what has worked. I had to retire from a job that I loved after 30 years because of this disease. I think the 15% is a low estimate of the number of folks that are Seronegative, just by the response I have seen here over the last day. It also confirms my theory that most Seronegative patients have trouble getting the right treatment to control their symptoms.

[Amy]

Hi Nan,  I am sorry to hear you are still very symtomatic.  I was also diagnosed with a positive SFEMG and my response to Mestinon.  I think we can learn a lot from each other.  I was curious about what treatments were working or not working for Seronegative MG patients.  I believe there is something that unites us all, maybe an antibody that has not been identified.  I know a little bit about PLEX because my brother had it as part of his treatment protocol for AHUS.  There are a number of recent pubmed articles on Plex vs IVIG for MG that I am going to read up on.  There is another member receiving IVIG, which I know nothing about other than I can’t have it due to having previous blod clots in my lungs.

Can I ask what your initial presenting symptom was?