Packed and ready to go..........
 

Hi Erin
 

I hope all goes well and that you start to feel better soon.

Love
Rach

Erin,

Hope all goes well and you start feeling much better. Take care...Sue

Dr. I sounds great. really thinking about you and trying to figure out what is going on.
I am sure he also consulted colleagues.

sounds very much like my neuro.

going to the hospital, having a line, and plasmapharesis is not much fun (to say the least), but I am sure that if it does make you better (stronger and without pain), you will feel totally different after it.

good luck,

alice

Mg ivig etc................
 

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

Hey Erin,

I really hope that this treatment gives you some relief! I know that PLEX helps me a lot, but it does make me feel drained (literally), so I hope that the good effects outweigh some of the bad ones... I understand your fears. I get nervous at the thought of having to have that treatment ever since I passed out the last time...But most of the time, things are just fine, so try not to worry to much....

I agree with Deb that it's odd that they're giving you PLEX right after IViG. I've had IViG after PLEX. This sorta made a bit of sense to be because I've read that that combo. (plex before IViG) can help; they're removing all the antibodies, then introducing 'new, healthy' ones. Even that didn't really seem to help me, though. I actually felt more sick after the IViG, which tends to happen with me (note to self: Stop agreeing to IViG- it doesn't work for you! lol). IViG just doesn't really work for me, but that's another story. But to give you IViG, then PLEX seems odd. They're giving you donor antibodies, then taking them all out.

Maybe you should seek out a second opinion. It's definately awesome that your doctor is totally there for you, and helps you when you need it. But from what I've been reading, you have been trying a lot of different treatments in a really short period of time. That must be hard on the body. Your body is constantly readjusting itself to all these drastically new changes (tapering from the pred., adding cyclosporine, IViG, PLEX, new pain meds., neurontin (read the last one is contraindicated for MG, in my MG bible, btw)). I know that you're feeling sick and tired, and that makes everything harder. I feel the same way too. It'd be a hassle to have to go to a new doctor, one you're not familiar with. But it might not hurt to have some 'fresh eyes' on the situation, as Deb said.

Anyway, I hope that you get to feeling better soon for a good long time!:hug:
Nicky

Erin, I hope all goes well. I miss hearing from you.
:hug:

Hey Erin,

Keeping you in my thoughts and prayers for some much needed rest and recovery.

JJ:hug:

Clearly you need something Erin. You know how much better plasma exchange makes you feel, keep that in mind while you're getting the straws put in... (I thought you had a port put in though, am I thinking of someone else?)

Erin,

Feel better sweety and try to get some rest.;)

Big Hugs,
Pat

Hi Erin sorry to hear your back in hospital again
i think what justdebs does make sence ive been having the same problems
of not being well and first it was come off the imuran then come down to a very low dose of steriods and its just the slow time it takes to get it right
any way every one wishes you a speedy recovery
alan:hug::)

Erin, I hope things go well for you.

I have to say that what Deb said is so true. And, Deb, thank you for being so honest and thorough. The strain on the body is one of the main reasons my docs won't let me have IVIG or plasma unless absolutely necessary. I have "fluid" issues, and infection ones, that make all the MG treatments quite problematic.

It doesn't hurt to get a 2nd opinion about how things are going. If your pain diminishes after plasma, I have to wonder too if it's from IVIG. When did your pain first start?

It's really hard being sick. And we all want to find that balance between feeling well and the treatments. You've had a hard time lately and I hope that gets better.

Annie

Packed and ready to go
 

Erin,
I just wanted you to know that you're in my thoughts. Hopefully you'll be feeling better soon. It's just not the same around here without you!!!:hug:
Kendra

Hope the plasma helps, & your pain goes away !

Hi Erin,

thinking of you at this time, hope all goes smoothly
take care
Kate

Erin,
I hope everything goes well for you, I also have been reading your posts for months, and my you have gone thru so much. I know you love your neuro , but I do somewhat agree with Deb., I would go and get a 2nd opinion definately., maybe someone else can see something someone else didn't.
I know the first neuro i went too wanted to fill me full of meds., my new neuro who is a specialist in mg has been treating me far more conservatively and I am very pleased with the change.

Erin's plasma exchange
 

Erin
I wish you only the best .I've only been diagnosed since mid Sept . but this forum has provided a wealth of info to me ... I'm not knowledgeable of plasma exchanges and IVIG procedures but I do know that when you're hurting you seek relief ..
Justdeb gave some wonderful advice to you and I really appreciate her words of caution ... I'm beginning to see the ups and downs of MG ....two weeks ago , I thought that Mestinon had me totally under control ..Last week ..Bam !!!!
Keep us advised of your progress and we're all there with you

Jack

Erin
 

Fistula
 

Hi Erin,
Ted had a fistula put in about 2 months ago and had his first out-paitient plasmapheresis with it yesterday. We were kind of nervous at first but it worked fine, yeah! Typically he would be like you and have to go into the hospital for about 10 days (series of 5). He is having shoulder surgery on Dec. 2nd and is having this as a precaution to make him strong. Typically he would only have plasma... when he was going into crisis mode. Hope all goes well, (I know that line is sooo uncomfortable). Get better and get plenty of rest and drink lots of water!
Janet

Hi there, this is also none of my business. However I do applaud the courage to speak up and present the contraindications and potential harm around the seductive trap in potentially overenthusiastic treatment of a process which is continuously altering it's presentation. No matter how desperate one might be, the conscious awareness that there is no magic doctor/TX/RX which will absolutely cure us on the physical level alone, is valuable and important to learn how to tolerate.

When both patient and doctor have an intense need to find and fix, and make it disappear, then the potential for harm is higher.

It is a paradox which is similar in almost any area of dealing with the unknown factors of unlimited numbers of diseases or conditions.

We are helpful when we remind each other of the value of the process of the learning curve, human limitations, allowing the symptoms, whatever they may be. Perhaps by not choosing action the new, unknown information might present itself. So many folks can never point to the exact cause and effect of their disease process, and it is useful to remind ourselves to remain observant and balanced, and refuse to panic by medicating, just because we can.

In honor of new information and resources and possibilities I wish you well.....TT