BBernadette

I was diagnosed with a positive Tensilon test and positive response to Mestinon.  It took almost 8 years for me to receive a diagnosis.

Hi Lisa,

My heart goes out to you after reading your story.  Some times it’s a long road to diagnosis and continues with getting appropriate treatment.  I was going to suggest the same thing that Mike did.  Research to see if there is a support group in your area.  It helps to hook up with a local group and meet members that have MG.  Perh…[Read more]

Hi Julie,

It sounds like you have a lot going on.  I hope that you find something that works for you.  Please keep us posted.

Best,

K Bernadette

Amy,

Has your provider discussed Rituximab (Rituxan) infusions as an option?  I know several people who have been on this treatment and it has helped significantly to control their symptoms.  I think the infusion are about every 6 months.  Initially this treatment was only for seropositive patients, but my neurologist says that it is now av…[Read more]

I’d be interested in being able to meet up on some forum to help support each other.  To be honest, this format is really hard for me to navigate with my double vision.

Also, FYI: the MGFA National Patient Conference is being held virtually next week (2/10 and 2/11).  They are having a speaker on 2/10 talk about seronegative MG and how to n…[Read more]

Maureen,

Reading your post brought back memories of all my symptoms prior to diagnosis.  My arms and legs ached miserably and the health care providers were stumped on what is was and how to treat.

Hang in there.  Is there a primary provider that can order the monitoring labs that you should have done for the azathioprine?  At least until you ge…[Read more]

Yes, being seronegative was a challenge with diagnosis.  It took close to 8 years from first mention of MG to an actual presumptive diagnosis and some treatment.  Along the way I had the normal antibody tests done including MUSK and some other more obscure ones.  Single fiber EMG was read to be negative, though clinically I presented as MG…[Read more]

Hello and welcome,

I am seronegative

Patricia,

Thanks for the information.  Wishing you the best on your next IVIG infusion.  A photo of the setup would be great.  It sounds you are getting great care at your infusion center.

I am also a Kaiser patient (in another state).  I was told that I cannot leave the IV in place between my two consecutive days on infusions.  I was a litt…[Read more]

Patricia,

I’m glad to hear that your infusions have helped with your MG symptoms.  Are your infusions for 2 consecutive days?  Do the nurses have to put an IV in for each infusion or do you have a more permanent IV access/port?  I’m just curious as the frequency of my IVIG infusions will be increasing at the beginning of the new year.

Bernadette

ThereseG,

I was told by my doctors that it means that I have no detectable antibodies to Achr and MUSK antibodies. I was also negative for several other antibodies that they test for with MG (LRP4 and anti-titin)

B.

Hi,

It sounds like you definitely need to plan a trip to a specialized center to obtain appropriate care for your MG.

I was seen at Mayo Clinic after visiting numerous neurologists in my area for a number of years.  I never received a presumptive diagnosis until I was evaluated at Mayo Clinic.  I am double seronegative so many neuros in the a…[Read more]

I was diagnosed with MG after 7+ years of symptoms.  It was initially thought that I had classic signs of MG, but my antibodies were negative so that diagnosis wasn’t investigated again for a number of years.  My presenting symptom was double vision.  I did have limb weakness, but it usually occurred later in the day, so it wasn’t observed by he…[Read more]

I’m sorry to hear that your husband hasn’t experienced any improvement in his symptoms with the IVIG infusions.  I have had several IVIG 5-day infusions that seemed to help my double vision and droopy eyelids, though it was very temporary.  This response caused my neuro to feel that the IVIG wasn’t really helping me.  It wasn’t until I was put on…[Read more]

I am not eligible for a “booster” yet because I received the J&J vaccine.  However, my antibody levels have increased considerably in the 6 months since my vaccine, so I’m OK with not getting a booster yet.  I am on Cyclosporine, Mestinon and IVIG twice a month.

I believe it is essential to have a primary care doctor for overall health and for care coordination.  Most of my visits are with specialists, but I am in a integrated health care system that keeps my primary informed as to current happenings with my health.

In terms of prescribing of medications, I  make sure they coordinate with pharmacist a…[Read more]

I’ve had several antibody tests. My 1st one was 1 month after my J&J vaccine and it was 25 U/ML. The second was 3 months after my vaccine and it was 250. I’m not sure if this was the same type of tests as yours. It said anything above 0.8  U/ml was positive.