[nonna3]

I get double vision and blurred vision, especially at night when my eyes are tired, but it can come at any time. Consequently, I limit my driving distances and try not to drive in the evening. I also wear prism lenses that help to relax my eyes and that often helps to avoid a major episode of diplopia. If I am driving and my vision sees double, I have to close one eye to see well enough to get home. Since I live alone, I don’t want to stop driving but I am cautious and I just got a new car with all the safety features to keep me able to drive safely as long as I am able.

[nonna3]

I have been taking Melatonin 2.5 mg for years to help me sleep. When I read that it might make my MG symptoms worse, I contacted my neuromuscular specialist and asked her if I needed to stop taking it. She said there were no counter indications and I can continue to use it. I did not notice any changes in my symptoms but the disease is one that fluctuates without knowing the reasons why. A good day can be followed by a not so great day, but the melatonin doesn’t seem to be a factor. At the suggestion of my daughter since prednisone interfered with my sleep, I did invest in a “grounding” fitted sheet and pillow case and that has helped me more than anything else I’ve tried with getting decent sleep. I really was a skeptic but willing to try anything that doesn’t cause more problems. I’ve been sleeping soundly on the grounding sheet since I got them two weeks ago, and I can only say that I hope it lasts.

[nonna3]

There is a rare MG anti-LRP4 antibody (low-density lipoprotein receptor-related protein 4) that is the most recent MG antibody to be identified, and there is a special blood test for it besides confirmation with an EMG and single fiber test.. Maybe it was discovered 3 or 4 years ago. Most people with MG have the AChR antibody (85%) and then about 10-13% have the MuSK antibody and about 2-3% have the LRP4 antibody. Some people have a combination of these antibodies but they all cause MG, only some function differently in our neuromuscular communication pathways. The problem for those of us with the rare LRP4 antibody is that we sometimes don’t respond as well to the more common therapies. Most neuromuscular specialists haven’t even treated anyone with this antibody. Thanks for asking.

[nonna3]

Thank you for your response. I am unfamiliar with Cellcept that you are now taking and wonder if it is an IV or pills and does help with the LRP4 antibody and symptoms such as swallowing and ocular problems? If the subcutaneous IG helped, is there a reason that you stopped? I greatly appreciate you all sharing your experiences with me. It feels like such a lonely disease and, especially, when the majority of research is targeting the most common MG antibody and not the LRP4, which isn’t always as responsive to the same treatments.

[nonna3]

Thank you for your reply and I will check out the video you suggested. I want to learn as much as I can about treatments because I know this anti-LRP4 antibody is so rare with MG. I was unable to tolerate Mestinon so I went right to prednisone, which is not great since I already have osteoporosis. If you know of an MG center teaching hospital with some experience with successful treatment of MG with the LRP4 antibody, please share that information because I would be willing to go anywhere to consult with someone that has treated this rare antibody.

[nonna3]

Thank you so much for sharing your experience. I have been on prednisone for 5 months since my diagnosis and it has helped but I am having difficulty sleeping even with the reduced amount. My doctor says the next step is IVIG but I have read that it isn’t always effective with the rare LRP4 antibody but works with the AChR antibody better. It looks about 5 years for me to get a diagnosis and I’m 77 years old. I have ocular, swallowing and some breathing effects that are most problematic. I have heard of some doctors using different treatments for our antibody and I wondered if anyone has tried them. My doctor has not suggested CellCept and I am unfamiliar with it. I am planning on getting a second opinion about treatment options at Johns Hopkins even though I have a wonderful neuromuscular doctor at Rush in Chicago.

[nonna3]

You are the first post I have read that also has the anti-LRP4 antibody and I have been diagnosed about 5 months ago. I wondered about treatments prescribed to you because I have been on prednisone only 5mg for over 4 months and began to have difficulty sleeping with agitation and strange sensations in my body caused by the prednisone. So my doctor has just gradually reduced it to 3mg and I don’t know if I will have worse symptoms now. I have osteoporosis and Glaucoma so I would love to get off of the prednisone and I cannot tolerate Mestinon. I wondered if there was a University Health Center that had considerable experience with treating our MG antibody where I could get a second opinion I have heard that Rituximab is a treatment that has been used but my doctor said I am not sick enough to prescribe it, plus it would be used off label so I doubt that Medicare would cover it. My doctor did say that the next thing to try with me would be IVIG and I am willing to try it but I have read that it isn’t always effective with the LRP4 antibody. It’s not good to have the rarest of the rare diseases. I’m searching for some place to get a second opinion if they have successfully treated LRP4. Any assistance appreciated.

[nonna3]

I have blurred and double vision from my MG but so far not the droopy eyelids. The one thing that has helped considerably is the prism glasses that my near-opthomologist has prescribed. The glasses relax my eyes and, unless I am overly tired, I can see much better. Without these prism glasses, I have 20/20 vision. The best time to get measured for prisms is when you are seeing double because they can find the percentage of prism that helps you see a single image and not double. I have MG with the anti-LRP4 antibody, and I’d like to know if anyone else has this same rare antibody. Good luck.