LindsayM - new member posted by Cait24
 

I am starting a new thread for this because I did not want the message to get lost. Originally posted by LindsayM
kathie

I am newly diagnosed and am soooo confused and mostly scared. I am so afraid of it getting worse. I am not real confident in my neuro right now, he is not the one that made the diagnosis, and actually in my opinion missed the signs (double vision, weakness, ptosis, positive ncs - which he diagnosed as peripheral neuropathy) because I had a negative antibodies test. I was diagnosed by a neuro opthomalogist. He says he knows MG, but he hasn't told me many of the warnings or medicines to avoid that I find online. He also initially also left me on a muscle relaxer that he prescribed for the nerves.

I am currently waiting to get into an MG doctor at the university where I live. My appt with this is not until the end of June. I talked to my neuro on Friday and he said that I needed to come back in this week probably to discuss other treatments that maybe Mestinon alone isn't doing the trick.

I am currently taking the ER Mestinon 2 x a day and I take the short acting as needed for breakthrough, usually around 10 and 3.

I think you are making the right choice in going to a University hospital. Finding a doctor with a lot of experience with MG makes a big difference.

Most of here, did the round of specialist sometimes for years before getting the proper diagnosis and treatment. MG can be overwhelming. It is literally, life-altering. But it can be managed. People do experience remissions, sometimes for years. We have had a lot of new members lately and there are a lot of recent posts with useful information if you have some time to go over them.

Please fill us in on your symptoms, frustrations and fears. We have many generous members willing to lend there expertise and experience to new members. Just let us know how we can help.

Mestinon is not a cure and only relieves symptoms for a short time. Most MGers take Mestinon and another treatment that gets to the root of the problem - the antibodies. Other treatments include pregnisone, cellcept, imuran, IVIG, plasmaphoresis, etc.. I take mestinon andpregnisone and am staritng IVIG in a few weeks.

Good luck
kathie

Welcome, and Im sorry you have to be here, but as kathie said- it is manageable, you just have to find the right "cocktail"... I personally don't have a confirmed diagnosis, and can totally understand your frustration with the neuro's For me, the heat and hormones are probably the 2 biggest exacerbating factors.. then adrenaline next after that (weather it's happy or sad adrenaline).. Good luck!! This is a great place!

new too
 

Welcome Lindsay

I am newly diagnosed also.(may 5) This forum has been so helpful to me. I spent some time reading through the old posts, I recommend you do it as well.

I am still struggling with my limitations and medications. I am on Mestinon 4 times a day, 60mg-30mg-30mg-60mg. I dont take any overnight so far. Everyone has to find their own unique dosage and schedule. I am also on prednisone 10 Mg. I was started at 20 Mg but had it reduced due to insomnia. I will start weaning off soon

The heat hasn't been as bad as I expected. It may be because I live in Fl. My biggest problem is stress. If I get the least bit stressed out for any reason, I am down for the next day or two. I mostly have diplopia and blurred vision, ptosis, slurred speech and neck weakness. Sometimes my legs get weak and I drag my foot.

Let us know how you are doing.
Sandy:hug:

Lindsay, I'm newly diagnosed also and just went through the process you are in the middle of right now. I'm not so happy that I have this disease but my initial fear of the unknown and confusion over the mountains of MG related information has passed and I am moving on. Sooner than you think, it will pass for you as well. I'm sorry we all had to go through that. It's no fun.

I assume you're taking 60mg mestinon 2x day. If so, that's not a large dose. If it's helping you, tell your neuro and he will be able to adjust the dose to further relieve symptoms. It works well for me.

I hope you are able to find some moments of peace while you figure all this out.