Double Vision and Autoimmune Diseases like MG: Can anyone relate?
Started having double vison after covid. Had MRI ,CT SCANS, MRA seen Neurologist & everything has came back Good. Seeing a Neuropathy doctor she diagnosed me as to having Myasthenias
Gravis autoimmune disease. She put me on
Prednisone steroid 20 mg tried that didn’t help bummed it up to 40 mg started to gain so much weight feeling horrible water retention light headed also didn’t help with double vision. Can anyone relate ? I’ve had this for 2 years and nothing or anything seems to help so depressing.
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I also have double vision as a complication from covid Oct 2020. I see a neuro-opthalmologist, and the treatment plan for me is vision therapy and prism glasses. Try seeing a neuro-opthalmologist.
Great suggestion, @louiseg. How did you know to consult a neuro-opthalmologist? Were you referred?
I am a little surprised if your problem is MG that your symptoms remain the same. One thing I have learned about MG is that if you have it now, you may not in a short time or if you don't have it now you might soon. In other words, it keeps changing, i.e. for me. I started with Ocular MG. One side of my face would not smile, then I could not chew adequately so went to baby food, then had Ptosis, eyelid surgery, double vision, and continued to get worse so 8 days in ICU in 2019 with IVIG and my symptoms were gone. However, in a couple of months I developed Peripheral Neuropathy which I still have (lack of balance) and my MG is now generalized, not ocular. I believe all was caused by lack of B12 absorption since my Intrinsic Factor is negative. Mention other symptoms you have. Are you anemic? Check your blood work. And, get the opinion of other Neurologists. I don't think most doctors that are not Neurologist have enough knowledge of MG. Just my thoughts.
@ess77
Hi, thanks for your post. Can I ask what the new eyedrop is you are taking that opens the eyelids and helps you see better?
Thanks!
@busterbrwn22 and all...It does work nicely. My eyes open much better and my sight is improved, clarity, range, and such. The double vision is still there, but less and less I can see through it or control it better.
Upneeq is the name. You can only get it from one pharmacy/company-RVL Pharmaceuticals, the manufacturer I suppose. It was $150 for a 30-day supply. I only ordered one time so far. Time to order again now. I will probably get prism glasses in the new year. Since wearing glasses from the young age of 7-8 I was thrilled to wake up and see clearly after cataract surgery several years ago. I still love not wearing glasses all the time. But, as the vision is decreasing, I'm running out of options. So, we'll cross that step when necessary, not today.
Hope all are doing well. I'm holding onto the improvements so far. Resting today after several days of higher activity. My poor watch is going crazy with my lack of steps today! It keeps reminding me to move...so I get up for some water or a snack...not quite what the poor watch has in mind...Tough. I now know and understand and really put into motion the 'rest as needed' philosophy. And, my life is greatly improved. I do recommend we all listen and hear our body telling us what it needs. It knows.
Enjoy the drops if you try them. Be well and be blessed. elizabeth
Hello, @raye. It's about 1 year later -- Hope you are well.
Flomax? Is that the nasal decongestant? I'll look that up. i have been using it the week of diplopia.
I also began having double toward the end of my day which is actually @6 am. I'm a chronic insomniac, though if I take enough drugs I can sleep all day long. After which I can barely walk. My balance is bad to begin with, I have Multiple Sclerosis and bad balance is one of my major problem.
Steroids, yes, can help, but too many oral steroids is bad for your vision. A friend with MS almost lost his vision completely because a new doctor was feeding him oral steroids. IV Methyl prednisone is better, once a week (not entirely sure about that) for a few weeks...
I only have double vision when I take off my glasses to write and read. I'm seriously myopic. Now that they've invented thin lenses my glasses look normal but when I was growing up they were brick-thick. Thinned lenses, sunglass-shaded, don't know how prism lenses could be added to all that...will look that up too.
@raye. Your message came thru totally garbled. Can you resend it?
i threw out my flomax, decongestant just in case anyway. can see why it might be problematic re tgn
@ekelks Am i understanding correctly-you’ve had double vision for 2 years? Does your doctor say what the cause is? I only had it for 2-3 months when I first was diagnosed with an autoimmune disease. He mentioned prism glasses, but we never had to try using them. Has your doctor talked about using these?
You grew up wearing glasses? Me, too! When glasses weren’t cute, either!
You mentioned that your day ends at 0600! Are you a nurse?
hi, no, not a nurse, just like staying up late, nice and quiet. yet to see md about this. this week will be seeing gp, next week neurologist, week after ophthalmologist.
someone will figure it out, i hope.