Sherri,

Weclome to our group. So sorry about your daughter but glad you found our group who is ranges in all ages and from around the world.

MG is very rare,so it is not surprising your pedestrian has not treated a MG patient. You will also find it may be hard to find a neurologist with much experience.

My first recommendation is to take the time to find a neuro with experience with patients including teenagers as in your case.

In reference to your questin I would suggest caution until your daughter is under proper care. Are MG patients are different, we often call ourselves snowflakes we are so different. However we all learn that we are extremely care about pushing it.

The problem with pushing it you will find your self " hitting the wall" and could have some serious MG problems incli
Using difficultly breathing and a possible trip to the ER.

Please take the time to check out the excellent resource information in the MY Groups - MG Lins and News. Be sure to clink the view all.

Wishing you and your daughter the best.

Bruce

Thanks Bruce. We have been referred to Dr. Howard at UNC. I guess he looks at the file before he will accept a patient. He sent us for B12 and another TSH test this week. Hopefully that means he will accept us. We should be able to schedule an appt when he gets those results. I just read that you have seen him before.

My daughter performed in the Macy Thanksgiving Parade this past November. The tedious rehearsal schedule really made everything much, much worse. I have to admit I was dismissing her symptoms as adolescent laziness until then. Her legs kept giving out and she is unable to dance for more than a few minutes since then. I definitely don't want to aggravate it or make it any worse but she insists on performing. We probably can't see the DR. til June. I was thinking about starting her on Huperzine-A before then.

Welcome to the group! Sorry to hear about your daughter's problems.

If she has MG, the usual medication that is used at first to give immediate strength for short duration is pyridostigmine (brand name Mestinon). You might ask the doctor to let your daughter try a small dose to see if it helps.

I don't think it is safe to experiment with drugs (even though they may be sold as "supplements") on others nor yourself. I think it is better to go through your doctor and ask first--supplements can be just as potent as FDA approved medicines, except that supplements do not need to pass any rigorous safety nor efficacy testing nor need govt approval. Testing them on yourself is one thing, but doing it to a child is worrisome.

If you want to find out more about what folks on this forum have said about huperzine a -- do a google site search on it.
go to www.google.com and type in the line below
huperzine myasthenia site:dailystrength.org

Hello Sherri, welcome. I am sorry to hear about your daughters' issues and your need to be here. I agree with Bruce and Russ' comments.

It is difficult for all those diagnosed with MG not to push ourselves. It takes time to know our limitations which can change day to day, there fore the reference to the "snowflake".
I can only imagine how difficult it might be for a young girl who is committed to her art.

When our legs or arms have met their limit, there is no pushing, but please please pay attention to breathing in order to avoid that trip to the ER.

Feel free to ask your doctors office to put you on a cancellation list. In fact , make a pest of yourself and call daily. It worked for me and others here to get in sooner than later.

Take care Sherri. All the best to you and your daughter.
Larissa

Because your daughter is an athlete, she may test normal under resting conditions. I would simtaneously contact other neuro's who will agree to treat seronegative patients, because if a doctor, based on data or lack thereof, will not see or treat, months are required to get in to the next doctor.

It is especially heartbreaking for athletes to deal with this disease. Because voluntary respiratory muscles can be affected, it is important for your daughter not to exceed her limits. That said, I believe I am stronger and have fewer side effects from drugs because I remain active, and no doctor knows enough to state with authority that that's not true. This disease is rare.

I don't know if you mentioned whether or not your daughter's weakness is fatigable. Does it improve with rest? How does she function in the heat? Many symptoms can be used for a clinical diagnosis.

Taking an over the counter supplement has on one occasion weakened me to the point that I was bedridden for a day. I would do a lot of investigating before I tried supplements or refrain from their use.

I am so, so sorry. I wish your daughter did not have to go through this.

To Elinora-yes her weakness is due to fatigue of exertion and relieved by rest. She feels fine for the most part until she becomes active. It's not just dance that bothers her. Stairs and running are very difficult for her. Her PE teacher in school has been great. He lets her sit and rest when needed and she still got an A on this last report card. The physical therapist has been the most helpful because she is the only one that has seen Allison before and after exercise (it angers me that not one doctor has tried to have her mimic the problem). She walks like duck or palsy like after working out. We have halted PT for the moment because it wasn't helping her. Not that it was bad for her it just didn't make the problem any better. We will probably pick back up this summer when her dance schedule is lighter.
The UNC doctor should do a rapid (something or another) EMG which hopefully will be more helpful that the first one.

You might want her to be active prior to the next step. It had not been my experience that neurologists attempt to reproduce symptoms, so you may need to initiate that discussion.

Welcome to this wonderful group of family. I was 15 when I was finally diagnosed. My first symptom was slurred speech. Words with a R or a S impossible. Then double vision. I was painfully shy & wanted to try out for track, but every time I would try to run I would fall. My parents took me to several doctors before I saw a ears, nose & throat specialist who sent me to a UC Davis. So a lot of GPs don't know what they are looking for. If your daughter can get started on some meds I would say keep dancing. If not things can go down hill pretty fast. Before meds, for me, I would go to bed weak & woke up weak.
Good luck to your daughter & your family.

Debbie

I agree that it's important for your daughter to not push herself too too far, to the point of not being able to breathe. I think it is really important to stay in shape though, even if dancing is too strenuous for her on some days, by going for walks or something. I think I lose muscle strength much more quickly now that I have myasthenia, but keeping some muscle strength is important to be able to cope with the disease. And I just feel better if I exercise a every day. I used to run marathons and can't anymore, though I still run a little, so I empathize with how frustrated she must feel to sometimes not be able to do something she loves. Everyone is different, but am used to having MG enough that now I can more or less tell when to stop pushing myself. And yes, when you do go to the doctor make sure they understand that she is an athlete, so that when they test her muscle strength, they expect it to be stronger than average. Hopefully she will be able to get proper treatment and will be feeling better soon.

Hello Sherri

I agree - Especially caution before diagnosis! Though understandably it is hard to have to compromise at 15....
Hopefully medication will even out some of the contrast from activity to fatigability.
In case at any point you think it would be beneficial for her to correspond/receive support from another, older dancer who suffers from the same symptoms, a lovely lady that I am in touch with, then feel free to send a pm.

Calmday

Hi, and welcome. most neuro's will say if you are stable you can exercise. As Bruce and other's have mentioned, going to the brink, can lead you to the edge, which is very slippery, and can lead to the ER. it has to be in moderation. This is unlike other diseases -- there's no quick bounce back...
be well,

Sherri, welcome! I am sorry your daughter have to go through this illness. She is so young. I too was athletic and I could only imagine how she feel. We are here to help in any way.Bruce, Russ and the others are right on point. She shouldn't overdo it. I start off with Pyridostigmine(Mestonin). Hope you can get her to see the doctor earlier. She should rest, rest, and more rest when needed. I will put you and the family on my prayer list. God bless you. Cabbage7

Hi,

I love to dance! I danced for Disney when I was young and now I just dance whenever I can get down to the groove. Although what I have done in the past may not be the same as what your daughter does and I didn't do serious dancing with MG, I can relate. Sorry to hear about your daughter's struggles.

I will echo what has been said, especially concerning Hup-A. There are actually people with MG that take HUP-A, but it is also true that we are all different and those that say HUP-A seems to help, could in fact be experiencing other benefits from the Hup-A to aid them. Hup-A cannot replace Mestinon for what it does for people with MG because MG occurs in the Peripheral Nervous System (PNS), not the Central Nervous System (CNS) where Hup-A would help the most.

I wanted to go at my MG naturally and tried to replace my Mestinon with Hup-A and suffered greatly. I don't believe Hup-A will cause any serious side effects or damage though. I think it is fine to supplement in moderation if desired, but only to help with energy and alertness. Caffeine has proven will do that also and a little caffeine can help people with MG because it affects the PNS and CNS. In my opinion, Hup-A will do nothing for helping signals get to muscles...

Huperzine-A has shown some promise for Alzheimers disease and although the like inhibitors ( like mestinon or even caffeine) seem to serve the same function as Hup-A, they do not.

I hope you get some answers soon.

If you can take a video of her during activity and right after for the doctor to see.
I also am hopeing they get to the bottom of it and that she does not have MG. But Like everyone says do not push to hard ICU IS NOT FUN!!
Also cantact the MG foundation and get there had book for health care it wil hep you understand this dease and treatments aso the different test better.
Chuck
Chuck