Myasthenia Gravis

[mobbik]

Hello,

My wife (28yr) has been diagnosed with MG 3 months ago and is on 6x60mg mestinon

Her symptoms started over a year ago with severe problems with eating / drinking and talking. Doctors diagnosed her with postpartum depression and gave her antidepressants.

Year after she was diagnosed with MG Mestinon is helping her with facial muscles problems, but she is complaining about arm weakens and double vision is starting to affect her somedays. Her arm weakens is to the point she can't lift anything.

We have an appointment with surgeon next week to discus option of removing thymus glen (?)

my question, did anyone tried the natural remedies that are available over the internet?

[moderator note: website addresses have been removed]

sorry, but Im desperate to find something that will let us live "normal" life. Those sites guarantee 100% success...but is it possible? probably not...

[amm34]

You can live a relatively normal life, but from a physiologic perspective, you need something that will address what is going on at the neuro-musc junction. Natural remedies will not do this. In fact, there can often exacerbate the condition. Is she on immunosuppression? They can take anywhere from 3-12 mos to work, which is frustrating.... Plasmaphereis and IVIg are 'good' alternatives in the meantime to get through the flairs. I have done it all, and can thankfully say I am pretty stable on immunosuppression and mestinon. Thymectomy can be beneficial, but I have decided to not do that b/c it's no guarantee. They are just now doing at study at Harvard on the true efficacy of thymectomies compared to gold-standard txs. There are lots of options and I would encourage you to try them and see what works and what her body can tolerate. Some are tougher than others, with variable returns for each individual. If there was a 100% guarantee cure, I am pretty sure it would be more mainstream. Good luck, but do trust that you can have your life back, it just takes time and can be VERY frustrating.

[mobbik]

Thank you for your replay.

Shes not on immunosuppression. I will do a research on that and try to educate her.
Problem is that she is still not accepting that she has MG and that she will probably have it forever... she is not reading about it, not trying to find some online support from ppl in the same situation. So it is up to me to find everything about MG and how to live/cope with it.

Next week we will decide on thymectomy.

Once again thank you.

[amm34]

I completely understand. I was 23 and in med school when I was dx. It was a blessing in that I had access to all the best specialists and hospitals, but also very overwhelming at first too. This was 2 years ago and yes, it has shaped my residency choices, but I have learned to live with it. I, too, was pretty much in denial at first, which lead to some lack of compliance and resultant trips to the ICU... I have since learned to just take the meds, be patient, and things will get better. The worst part is how long it takes for things to work. Like I mentioned, all the immunosuppressants take a number of months, but do remember that thymectomies can take up to 3 years before people notice a difference, but that the most success is found in people who get them early in their dx. If she is getting dbl vision, I recommend a neuro-opthmologist. They have amazing solutions. I recently got some prisms, and also special contacts which all help with the dbl vision. Give her some time, let her try different therapies. Good insurance is key b/c lots of the best txs are very expensive. Honestly, if she is getting weak, perhaps a round of IVIg or plasmaphereis might be helpful just to lift her spirits and show her that you can live basically normal with some flexibility and perhaps some acceptance of a new reality. A good neurologist (neuromuscular specialist) is also key, as you will be spending lots of time with him or her. Feel free to ask questions as I am sure most of us here have lots of perspectives to offer. Good luck.

[liddyann]

I also have prism lenses in my glasses, which have helped my eye fatigue alot. I would love to go back to contacs. Do your contacs have prisms?

[amm34]

I don't have contacts, but I don't believe they can do contact prisms bc that is what I wanted rather than glasses since I didn't want anyone to notice the prism. The only contact alternative my neuro-opthamologist offered was an opaque lens in one eye to eliminate the dbl vision. It is an easty soln, but you lose your depth perceptions, which is ideal for my work, but if I were in a different field, I might consider it.