[Stellatum]

What's the protocol here? It's not an emergency, and the doctor knows it, but I want him to start my Imuran (we had some stuff to work out first). What is the prudent thing for a patient in this situation to do? I do not want to burn any bridges. It's taken me a long time to get diangosed, and this is my local neurologist, the only neurology practice in the area that specializes in neuro-muscular diseases. He agrees I have MG even though I'm seronegative and his SFEMGs were inconclusive and my symptoms are atypical. So, this is a doctor I do not want to lose! I also think he's a good doctor, and we communicate well (except when he won't call me...).

How do I handle this situation? He was supposed to look into some things and call me back--that was two weeks ago. I left a message for him one week ago asking him to call. Nothing. I will call tomorrow and leave another message. Then what?

Abby

[AnnieB3]

Abby, Can you make an appointment to see him and talk in person?

It is going to be Valentine's Day tomorrow. Perhaps since doctors spend so much time away from home, this is one of those days or weeks when they actually concentrate on things other than patients. Think of the significant others of doctors, doing without their attention all the time. It could literally and figuratively be a "make up" day. Or make out day.

You know how they are, doctors hate being pushed. So make an appt. Or hope the serotonin from the chocolate tomorrow puts him in such a good mood that he calls. This doctoring stuff should be easier.

Are you sure you want to try Imuran? Do you have any history of cancer yourself or in your family? I'm sure you've already thought about all of this. Would this be better than IVIG for you?

I hope he calls. Think of all the girlfriends today, asking themselves the same thing. I would be asking, "Why don't you call him?"

Or maybe he's on vacation in Florida, because it's too cold everywhere else to think.

Annie

[Stellatum]

Thanks, Annie. That is very sensible advice. I would really rather not make the trip (as I'm sure you understand! It will be _all_ I do that day), but it will be well worth it to get a response without alienating my doctor. And yes, I did notice the Valentine's Day connection! Should I bring him some cookies?

I am not being offered IVIG. My symptoms just aren't severe enough, I guess. My choices are Imuran, Cellcept, or Prednisone, and the doctor and I agree that unless I start having trouble breathing, or start falling, or something like that, it would be better to avoid the Prednisone. So I chose Imuran. I'm aware of the risks.

My paternal grandparents both died of cancer, but my maternal grandparents lived into their late 80s, and my parents are both alive (in their late 60s). I inherited an over-active immune system from my mother and her mother--germs are afraid of us (I can't remember the last time I had a cold). And we have autoimmune diseases (Graves' throughout, and my mother had extremely severe atopic dermatitis, cured finally by UV light treatment). It has crossed my mind that Imuran treatment might not only put me in MG remission (because my case is relatively mild) but also cure my Graves'--and perhaps even prevent future autoimmune diseases like MS.

But, my neuro's not happy about starting Imuran on me, since he thinks I'm of child-bearing years and he's worried about birth defects, if I conceive unintentionally. I found studies showing that the risk is tiny or non-existent, but all he sees is that it's a Pregnancy Category D drug. I also found studies showing that at my age--almost 45--the chances of conceiving are miniscule, even if I were not trying not to! So I think his concerns are unwarranted. That's what the hold-up is about. But if he's still not willing to consider the Imuran, maybe he would consider the IVIG after all--and maybe that's a better option for me anyway. Though with Imuran, I have the hope of remission, but not with IVIG, right? The Boston neuro said that (maybe because my case is relatively mild) it's "very likely" that the Imuran will put me in remission within a few years.

Abby

[AnnieB3]

It's funny how doctors need reassuring too. Sometimes, maybe more than patients. Maybe that's what he's waiting for . . . just the right "signal" from you that you won't have a child, that it won't have defects and that you won't end up suing him. It always comes down to litigaphobia, doesn't it?

The Catch-22 about immunotherapy is that your chances increase for having a remission but so does the chance of an exacerbation due to infection. Or cancer, anemia or lots of other side effects like not being able to sleep well.

Whatever you decide, I hope it helps.

Do you mind me asking what kind of cancer your paternal grandparents had?

Annie

[Stellatum]

Originally Posted by AnnieB3

It's funny how doctors need reassuring too.

Right. I'm doing my best. I do understand why he wouldn't want to feel responsible for birth defects. I have a lot of respect for problems of conscience.

Originally Posted by AnnieB3

Do you mind me asking what kind of cancer your paternal grandparents had?

Not at all. My grandmother had ovarian cancer, and my grandfather had prostate cancer.

Thanks, Annie.

Abby

[Jomar]

After 2 weeks of waiting, I think I would make sure the receptionist or whoever takes the messages for him, knows that he said he would get back to you and that you left messages 2 times already..and have not heard anything back..

I could see it possibly taking a week or 2 to get any info that he wanted..so a reminder call is appropriate - and maybe ask that he let you know how long it will til you will hear back from him.

If it's a message on his own voice mail he could be disorganized and forgetting about it..

I don't know if you are leaving the message at the front desk or his voice mail.
But try both ways if possible.

A few drs offices even use email now.

But many don't use email - takes up too much non billable time.

[Stellatum]

Annie, if you don't mind talking about it (if you do, just ignore this!), can you tell me your own story? I know you've had MG all your life, but have only been diagnosed for a few years (?). I know you're not on any immunosuppressants. Why not? Did you try them and have trouble with them, or did you decide the risks outweighed the possible benefits? What about IVIG or plasmapheresis?

Myself, I am getting great (geeky) pleasure out of making line graphs in Microsoft Word. I have different colored lines for symptoms, activity levels, and the hormones that govern my cycle. After two weeks of plotting, I see a strong correlation (I've named it the "Duh Correlation") between activity and symptoms. A day of heavy activity means the next day will have high symptoms. But I knew that. I'm also about to try, finally, the progesterone--which is a bit scary for me.

Abby

[AnnieB3]

Abby, I'll write the basics down in another post. I can't write it all! I'll hit the highlights. What do you want to know?

Annie

[Stellatum]

Originally Posted by AnnieB3

Abby, I'll write the basics down in another post. I can't write it all! I'll hit the highlights. What do you want to know?

Annie

I don't want to wear you out! I'm mostly wondering whether the standard treatments (immunosuppressants, IVIG, plasmapheresis) failed for you, or whether you chose not to go those routes. I'm trying to make my own decision here--I had decided on Imuran, but there's this delay now, so I'm rethinking.

Abby

[AnnieB3]

I have issues with easily getting infections. That and the fact that I have had a few allergic reactions to antibiotics doesn't really make me a good candidate for immunotherapy. Plus our family cancer history of adenocarcinoma (GI tract cancer that spreads). They wouldn't do a thymectomy for the same reason, although I'm not convinced that a thymectomy would "work." I've never liked the idea of carving into a body. Sorry, just my opinion. After surgery in 2004, I got celiac disease two months later. I don't think that was a coincidence.

Also, after my MG crisis in July 2005, I got folliculitis from the damn steroids. Had to have antibiotics and then got clostridium difficile. I wouldn't even wish that on doctors.

As far as IVIG, the concerns are similar. I wouldn't mind trying either IV or subcutaneous IVIG but my body reacted to IV Benadryl once, so I'm not really hopeful about that either.

Plus the neuro drama, being red flagged, blacklisted and generally pooh-poohed, plus one neuro covering his back side because he was WRONG by dismissing my concerns about MG and then getting his other "pals" to do the same.

I was diagnosed with lazy eye when I was ten (1968). It wasn't lazy eye because lazy eye is permanent by then. And they thought only my right eye had it when, in fact, both eyes had fatigable weakness/ptosis, as did my eyebrows; which is clearly seen in my K-12 photos. I discovered that in June 2006. I was diagnosed officially in February 2001. A neuro-ophthalmologist said I had ocular MG in June 2000, two months after seeing my first MG expert, the one who dismissed me and began all this nonsense. My modulating antibodies were positive in March 2002 (almost positive in April 2000) but the neuro did not tell me about that, did not give me the results, I didn't get them when I asked, he later dropped me as a patient and "terminated" me from the clinic. Why? Oh, come on, you know why!

I didn't find out about the positive test results until I read that neuro's notes right before I sent in medical board complaints. If I hadn't decided to do that, I may never have known about that. The clinic he used to work at said that the test never existed. It wasn't in my chart, that's for sure. So I dug around and called the clinic who ran the lab, got it sent to the Schwarzenegger clinic and then they sent it to me. Good grief.

I had no idea I lived such a sordid life.

I have accepted that my life is about compromise. I should've had a Bi-Pap since 2005 (my MG crisis) but that's another story. I survive on Mestinon, afternoon coffee and common sense (most of the time). I would rather not be in a doctor's office or the ER every other week from infections or other complications, so I won't even try the other drugs unless I have to, like during another crisis. Too much doctoring trauma for one lifetime.

So, is that enough info? It's such a personal choice but it should be a highly informed one. Read those drug inserts. Think about what it would do to your life in very real terms. Then you'll make the decision that is best for YOU.

When my dog got pancreatitis in July 2008, my health started taking a downward turn. Due to his prescription, high fiber/low fat canned diet, I live an unpredictable life, often getting up at night to take care of burps (gassy food, that high fiber) and poopies. It's like having a newborn baby. It's what makes my MG tank the most - the lack of sleep.

Good luck in figuring all this out. It's not easy having MG, let alone deciding how to deal with it.

My former internist back in 2000 said, when I first discovered that I had ptosis, "Why would you want to know you have myesthenia (his misspelling, not mine) when the treatments are worse than the disease." Not exactly up to a doctor to decide that.

Anyway, hang in there. Things could be worse and usually are.

Annie