BBernadette
Forum Replies Created
-
I’ve had double vision due to MG for 20 years. Some days are worse than others with my vision. I wear a patch when I need to and it certainly eliminates the binocular double vision, though sometimes I find it hard with monocular vision. I’m not embarrassed wearing an eye patch now, but early after diagnosis I was. Generally prisms in my glasses help to alleviate much of the double vision.
I am not aware that wearing a patch will help improve vision for MG patients. Wearing a patch certainly does not improve acuity, except for eliminating the double vision. Could you cite your source so that I can read more about it.My understanding is that because individuals with MG have antibodies that block the AChr receptors, the eye muscle weakness is due to the interference in the neuromuscular transmission—not weak eye muscles per se.
Someone with strabismus (usually kids) can benefit from the eye patching to strengthen a specific eye muscle and hopefully prevent amblopyia.
Do you wear an eye patch?
Bernie
-
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. Perhaps you could “google” for support groups in your area. I know that my support group in my state does have a website, so it shows up in searches.
Also, make sure that your (new) neurologist is a neuromuscular specialist. They should have a better understanding of current treatments for MG. It is not a one size fits all disease, for sure. I had symptoms for about 7 years before I was sent to Mayo for another evaluation. My antibodies were negative at the time that my initial symptoms presented, so they didn’t investigate any further. I am thankful that I was able to be reevaluated by doctors at Mayo clinic and started on a course of treatment. But…it was a very long road.
I hope that you’re able to find a neurologist that can partner with you to provide the best care possible.
-
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 navigate a diagnosis. It’ll be interesting to hear what they have to say.
-
Hello and welcome,
I am seronegative
-
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 area didn’t feel comfortable initiating treatment. I was evaluated by a neuromuscular specialist at Mayo and also a neuro ophthalmologist (due to my diplopia and ptosis).
Mayo initiated treatment and worked with my PCP back home coordinating care until I was able to establish care with a neurologist in my area.
I think if you requested to see a neuromuscular specialist and an ophthalmologist, that would cover your primary concerns. The neuro I saw at Mayo also ordered additional testing to rule out other diseases. I was very pleased with the process and they got me on the road to appropriate treatment. I’m not sure where I’d be health wise if I had not made the trek to Mayo. I was there for about 5 days. My doctors back home followed up with my Mayo neuro as needed.
-
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 health care providers for quite some time. It was quite a long and winding road to diagnosis and appropriate treatment.
-
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 and/or neurologist so that I’m assured that there are no contraindications with the medication. I also carry with me the MGFA produced card that lists medications that should be avoided with MG. In addition, I am able to access a website that has a “medication interaction checker”, and will alert me if something prescribed is contraindicated.
There are also health issues that need to be addressed that are not in the realm of neurology expertise and I feel that is is best to start with your primary care doctor.
-
Thank you for your helpful reply. I hope that your husband continues to do well.
-
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 available to seronegative MG patients.
-
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 get in to see your new neurologist.
-
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.
Double vision was my first symptom and it still continues to be the biggest issue. I also have had swallowing issues, slurring of speech, and muscle weakness (mostly arms). I was diagnosed on clinical symptoms and a positive Tensilon test. I’ve been on a variety of treatments and am currently taking pyridostigmine, prednisone, cyclosporine and IVIG infusions. The regimen keeps most symptoms at bay.
Amy, are you currently getting treatment? I totally understand that it is difficult to find a neurologist that will manage treatment of a seronegative patient.
-
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 little surprised as they left it in for 5 days when I started my infusions earlier this year and received 5 days in a row. It certainly doesn’t make sense for them to pull a perfectly functioning at the end of the 1st infusion and then put a new one in less than 24 hours later when I return for the second infusion. I’m getting infusion 2 days every other week–so that’s a lot of IV sticks. 🙁
Best,
Bernadette
-
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.
-
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 a maintenance regimen of infusions every two weeks that I noticed a sustained improvement in my vision as well as elimination of other MG symptoms.
I receive my infusions at an infusion center, and I am allowed to take Claritin instead of Benadryl. This is primarily because I get too sleepy with the benadryl and have to drive home alone after treatment. I also premedicate with Tylenol to help with headaches during and after the infusion.
-
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.