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Member
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Join Date: Apr 2009
Location: ohio
Posts: 160
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Member
Join Date: Apr 2009
Location: ohio
Posts: 160
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I know I am just going in circles right now., and probably stressing myself unnecessarily., so I am going to try to put it on the back burner for now., as I go to bed thinking about it, and wake up thinking about it., and I don't want to make myself worse. Thanks for all your help and support.
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Originally Posted by Maxwell'sMom
Hi, I wanted to echo what others have said, that your neuro in a very bad way, doesn't want you to get stressed out over this, as it can throw you into a crisis. And he doesn't want that. Now, I really wanted to say something that I don't think any one has addressed. Every Neuro does things differently when treating MG. Some start out with Mestinon, and they'll have their patient start out slow, cause Mestinon can cause terrible terrible G.I. problems, or you can accidently over dose. Some times it's to get you use to knowing how much you'll need. It may never get to be more than 30mgs, as you may not need more.
Some Neuros will start their patients out on Prednisone, and not even start Mestinon for months. (This was my case. I didn't start Mestinon until around 8 or 9 months after I was given Prednisone)
It really depends on the patient's condition, and the Neuro.
Some Neuro's go right to IVIG's, or Plasma, and some right to Imuran, Cyclosporine....etc.
I'd stick with this Neuro a little longer, and if you continue to feel like he's belittling you, or feel like you just can't have a good relationship with him, Find Another Neuro. Call your local MDA and ask who's good for Myasthenia. And by good you mean, both, knowing his stuff, and is easy to talk too.
Do you have someone who can go with you to your next appointment? I really hate saying this, but are you married, or have a brother that can go with you, to help stand up for you? An Avocate is so important. My hubby goes with me to all my appointments, just incase I really need him to talk for me.
I know this is hard, but don't get too overwhelmed with all the information. There is so much to learn, and it took me a couple years to really be on top of it. I've read just about everything, and knowledge is power, it really is.
I really feel for you, and I know what a difficult time this is for you. Wish I could sit and talk with you face to face.
Pittsburgh has Fantastic Doctors. I go to the Pulmonary Hypertenion Clinic. Although I couldn't make the regular trip for Myasthenia care, they have wonderful MG doctors there too. For PH, I only go every 6 months, to a year. But for MG, I'd have to go every so many weeks, and there is No Way I could make that 3 hour drive that often. (my husband drives me, but being the passenger wipes me out, can't imagine being the driver)
Wish you were in Pittsburgh too.
Love Lizzie
Wanted to add that if the neuro feels you need a Pulmo. he'll reccommend for you to see one. I have to see one because of Ph, and sleep apnea. But not everyone with MG has to have a Pulmonologist. For now, trust in this neuro's advice. He has your medical records, we don't, so he may be doing what is best for your body. ( I do think he stinks in the comforting area..smiles..but probably had your best interest in mind,)
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