Originally Posted by justdeb

Erin, I have been observing the progress of your care for many months now. I have not spoken as it has been none of my bidniz. I think a lot of you and I like you a lot. At the risk of losing your friendship I am going to make this post. I'd rather have an ex friend who is among the living than have a friend who is not.

I think it is time to speak up. I know that you are probably not aware as you are a relatively newly diagnosed person, but we have in years past had a serious serious shortage of IVIG. People were forced to live without it. Live is a word that I use loosely as they didn't "live" but merely survived!! Hanging on until they could get the treatment they need to make it thru. IVIG is not just for MG patients. There are many others that use it. And have to live in a very dangerous state when they can't get it. And this most recent waste of the IVIG in your case is horrendous to my sensibilities. This tis the second time that I can remember you getting IVIG and then pex shortly after thereby wasting the ivig.
Hun are you aware of the havoc that this is doing to your body?? IVIG itself carries risks and issues all by itself. Your body has to process this formulation thru the liver/kidneys. It is not simply an infusion of IV fluids. It is hard for the body to process/utilize it. And now the PEX. that is not simply pulling out the fluids and antibodies. You are taking huge risks with it. Just the shift in fluids/electrolytes is a huge strain on the body. Not to mention numerous other issues. Then add to that the addition of the replacement with albumin. Also another thing that is very hard on you.

My concern is that you are getting these things in a very random disconnected way. PUtting your life at risk over and over like this is not a good way to treat the MG. I implore you to consider getting a second opinion.

Let me tell you what a very wise doctor told me about mg. When you make a change in treatments, you make ONE change at a time (not being done in your case) and then you wait, (also not being done in your case) Changes to mg are handled like trying to turn the titanic around, it is done very slowly and carefully and takes time. IN other words, you make a change and you wait. good or bad you have to wait for the results. The medications for MG are infamous for the WAIT periods. MOst take MONTHS to show any improvement and likewise to confirm failure---whichever the case may be. This is not what you are telling us is happening in your case. OVer and over you have changes one week to the next in your protocols.

You are now on some heavy duty meds for pain, that is not going to do a thing to help the MG. No matter what meds/treatments you get for the MG the pain meds will override them and be the controlling force.

I know this is not my business, but the IVIG portion of the program is. As I said the shortage from past days could very easily stir up again!! And as a pt who is very much dependent on it, I implore you to seek a second opinion on the protocol you are currently using to treat the MG/pain. You are putting your life in jeapordy at least these two times you have had the ivig and then followed with PEX.

And what you are calling "crisis" are in fact NOT crisis for mg patients. You have undoubtedly had some issues, that is for sure. But you have not experienced a crisis yet. (basing my assessment on your posts here each day) Each time we have a "flare" of an MG symptom it is not the standard of care to run and get IVIG or a new med.

I have a friend (just one example mind you there are many out there) she has double vision as part of her MG. Some days she can see clearly for miles. Other times, not so much as the DV is in control that day. This is the nature of the MG. There is no need for her to change her protocols because it will come and go. You can't treat that sort of symptom in isolation. You have to treat the MG as a whole. If she were to have a new protocol or change to her protocol each time she had the symptom of DV (just one of her particular MG issues) she'd be a medical nightmare. That's what happens when you switch treatments from week to week as you have been doing.
We all have days sometimes weeks where the MG is not gonna act right. That is the nature of the beast. That is how MG behaves. We have to in most cases ride it out if there is not some underlying issue that is contributing.

I know that you think very highly of your doctor and that is wonderful!! BUT would you please consider a second opinion?? NOt saying you have to change docs, just have another possibly more experienced set of eyes looking at it? There are many docs around who are very experienced with MG. The group at UTSW in dallas have a fabulous track record for treating MG. They have a LOT LOT LOT of experience. They are also one of the forerunners on the research into treatment modalities for MG.

Texas Neurology also in Dallas have great docs too who have much experience in MG.
There are several here in town as well. Ann Bass, Carolyn Jackson. There is a new clinic for private pay at the university now for neuro patients. They too are on the cutting edge of technologies now. With the private clinic the wait is non existant now like it used to be to be seen on campus at the clinics.

WEll, I am sorry if this post is upsetting, but again, I will risk the anger to see you get a wake up call.
HUGS