New Diagnosis
 

My 14 year old daughter was diagnosed with Ocular Myasthenia about a month ago. My wife and I are still trying to figure out when things are MG related or not. Example, she came home yesterday and lower back was quite painful and legs were somewhat weak. Any idea if that is MG related? We are trying to reach Dr right now.

I'm sorry your "baby" and family are dealing with MG. Although back pain does not sound like MG per se, the weak legs could possibly mean MG. In a large percentage of people with ocular MG, generalized MG develops eventually. I hope that isn't what is happening, but I agree with you that the doctor should be notified. With symptoms like she is showing, it could be several different things other than MG as well.

I hope you find some answers soon and your girl starts feeling better!

:)My son was recently diagnosed with MG. He started with ptosis, but now suffers from muscular weakness also. Sorry your daughter is suffering from these problems.

Thanks to you
 

Support much appreciated. The hard part seems to be to figure out what is MG related and what isn't. We have two different doctors ( primary and neurologist ) and coordinating communication will take some work on all parts. One thing I'm not sure of- as autoimmune diagnosis, we have swelling in lymphs per MRI, so is this another infection going on? Will infections/ reactions be more frequent or severe? Another MRI scheduled for next week so see if lymph nodes are shrinking as result of medication. Will this be an ongoing part of MG?

so sorry to hear about your daughters diagnosis.. I am not a firm diagnosis, but when I am having an exacerbation and am weak all over my low back muscles and buttock muscles hurt due to the strain of simply standing upright..

The lymph node swelling/infection is definitely not a part of MG, unless your daughter is on immune suppressing medications, which can increase the chances of infection. Has mono or other virus infections been ruled out for her?

Yes, it takes some time to learn to manage and realize what is MG and what is not, especially since you are still not even sure if she "just" has ocular or if it has generalized. I hope you can get things coordinated with the doctors, as that is always a challenge.

Have a good day.

Is she on any medication for the MG?
Please be aware, if she has an infection of some sort (swelling of lymphs), some medicine can worsen the MG. So if you're primary doc prescribes something for the infection, please look it up and/or ask your neurologist.

Or do you mean the thymusgland is swollen on the MRI? Because that is a "normal" thing for MG patients. This could be a thymoma, or thymus hyperplasia. It's also possible it doesn't really have to do much with the MG, because she's so young: it shrinks with age, the first years of your life it's much bigger.

Anyway, I just wanted to add this; I don't know if she's already menstruating, but be aware that it sometimes gives more weakness (hormones) that week or the week before. Especially on young woman, because it just tends to be not that stable anyway (menstruation I mean). Just something to keep in mind.

I wish you all the luck, I also got sick when I was a young girl.

Mono
 

Answer to the question on mono: Dr called about 10 days ago and asked if she'd had mono, and we said to the best of our knowledge, no, certainly no diagnosed. Guess she had antibodies from it in her system... so Dr presumes she had a mild case in not too distant past.

I'm sorry to hear :(


As for the back & legs, the nerves to your legs run around your lower back, so it's possible the nerve is being pinched and causing tingling and discomfort in her legs/upper thigh/butt area. I had this EXACT thing happen to me in January (January 1st..happy new year lol). Ice helped a bit (be careful with heat, because heat loosens the muscles and not good for MG, maybe only do it for 5 minutes to get the quick relief but not too much to really weaken her muscles in that area too much), and just have her keep her legs up. It hurts a lot but it will go away. Tylenol helped me also!

My lower back pain had a few contributing factors: I work in retail and it was just after Christmas, I think it all caught up to me from working. On top of that I was having my period (sorry for TMI but it's useful to know), and lower back pain is a PMS symptom. For me, I get the nerve pinches, sometimes it feels like I can't even stand straight up. Women with Myasthenia get weaker around that time of the month, so I think my muscles also got extra weak from that, causing me to have EXTREME nerve pinching and discomfort. I just did ice, a bit of light heat, tylenol, and didn't work for a week.


Hope this helps and she feels better soon!

Well, MRI says thyus is normal size and nothing attached. When they were examining that they discovered her lymph glands on one side were quite enlarged. The plan was to do antibiotics by 5 days into Amoxicillin we discover she's having a reaction to it. About 4 days later, back pain. We were about 10 days post menstruation, and that has been normal and regular.