Getting frustrated with the system
 

My neuro said last week that I needed to be referred to the Mayo for worsening symptoms. Since that time my symptoms continue to progress. I have gone from purely ocular symptoms to speech and breathing issues. Also my vision is bad most of the day with more general body weakness. I am now only working 2 days a week due to fatigue. I have to sleep in recliner many nights due to heaviness in my chest. When I called the office to see what progress had been made I found out they had not started the process at all. The nurse told me they were getting it done as fast as possible (yea right). When I told her my concerns about my progressing symptoms she directed me to go to the local ER if needed. I asked them to call me when the referral finally goes out so I can follow up with Mayo and my insurance. I must say I have lost a lot of confidence in the staff. Anyone have any suggestions on how to move the process along? I have met with another local MGer and he expressed concern over my condition. (thanks bill) :hug:I feel I have to take him seriously since I have never seen anyone else with MG nd have no idea what symptoms to worry about.:mad:

You can get your GP to do the referral. But you will probably have to do a lot of phone calls and faxing of results on your own. That is what they told me for John Hopkins. John Hopkins said there is a review process by a board and a usual 3 month wait list. But they did say that if symptoms worsened, to keep them updated and they may be able to bump the appointment up with a cancellation. Good luck and let us know how you make out.

If I were you I would pursue it. I definitely think it is worth the effort to get the best experienced doctors who treat more aggressively.

kathie

I am pretty aggressive where my health and the health of my family is concerned, and have no difficulty whatsoever in calling the referred institution and explaining situations. I find it very effective.

I'm glad you have an "in-person" contact. Definitely if the breathing really bothers you, or you can no longer manage saliva, get into an ER the fastest way possible.

Hope you get some action soon.

insurance nightmare
 

Unfortunately I have Tricare Prime as my insurance as my husband is retired military. It is the most restricted plan and the cheapest. It made sense when I was healthy but now there are many more hoops to jump through. You are restricted to in network docs only unless a lengthy referral process is done. I spoke to a Tricare Rep and they advised me not to see anyone until they approved the referral. If I did so the claim would most probably be denied. The only other way to go is through the ER. The Er doc can call in whoever they want.
I am doing somewhat better since I started taking some Huperzine A yesterday. My breathing and weakness are better. I am going to start calling the office staff everyday until the referral gets sent. This is stressful and exhausting:Bang-Head:

Sandy, See my response in your other post. Dr. Weiss is covered by TriCare.

Annie