Kathie,

Unfortunately, the ER is sometimes needed for things to be sorted properly and sadly, to be taken more seriously. The fact that you are staying home, in a way says, "it's really no big deal." Health care, when as seriously ill as we are, is something of a game, and you will need to learn to play it in order to get the proper care. Sad but true--and will get worse with time, I'm afraid.

As for your daughter, I know you've said she has 5 families who wanted to take her with them on their vacations. Surely one of them, or someone else (as it sounds like she has lots of friends), could let her bunk at their house for a few days if you become hospitalized. If nothing else, she could stay in your room with you (fudge on her age if need be!)

Now, about the thymectomy. Right now you are not a good candidate for the surgery, as you obviously have either a bleeding or liver issue, neither one of which would be happy with a major surgery happening. So that is likely going to be put on the back burner at the very least. You will have to be in much more stable condition for that.

Finally, the PLEX.... It is also VERY hard on the body, and you have to have good blood counts and a relatively healthy body in general to do that, too, as blood cells do get damaged during the whole "cleaning" process. You may have to have more testing done to determine what is going on with you now before they put you on such an invasive therapy. Also, you may need to consider that they may want you inpatient for it...which would be anywhere from 5-10 days in the hospital.

In any case, it would be good for you to round up support and care for your daughter. Any of the above scenarios will require it.

I would also suggest looking around for a new PCP--one who will work more closely with you and your neuro, like a team. The whole "Not gonna show the blood test reports" just BLOWS...I would be furious and probably would latch on like a pit bull until I got them (but that's just me.)

Hope you are feeling some better today. Hang in there!

Thanks so much. I guess I may need to accept the ER as a reality. The question is which ER - local which may mistreat my IVIG, or a trip down to the city.

But I began to feel very ill/weak at work today. I got fed up with the whole process. I called my GP and insisted on appointment They were more receptive this time. I think they saw my condition and felt sorry for me. I think crying helped. They did review my blood work. Liver enzymes are down to normal. Wbc are coming down towards towards normal, still high.

Albumin abnormal low and getting worse. All electrolytes are abnormally low. Hemoglobin is getting worse/lower (11). My CMV titer was positive. COuld this be due to the IVIG or do I really have an innumocompromised infection from the pregnisone?

I got referral for a PT evaluations for falling again, referral for a gastroenterologist. They are retesting the blood work this week to see if it is getting worse again. They will call the neuro to try and coordinate care and see what else they can do for me and what is related to MG or treatment and what is not.

So I guess I have anemia due to malabsortion, perhaps with a G bleed. I agree I need to get that under control. I am in no shape for surgery. Anything they do I will insist on being done as an inpatient so I can get proper care. I am very afraid of the ER, I hear so many horror stories from MGers.
Thanks so much for your frank evaluation,
kathie

Glad some of your bloodwork is improving.. interesting about the CMV titer.. when I was hospitalized when I crashed 2 years ago my CMV titer was also positive (it had been negative months earlier, as they tested it at the end of my pregnancy).. I think I Had already had one dose of the IVIG when they drew the blood, but I was so sick I'm not sure.. anyhow,, I have malabsorption/GI symptoms too - so it's still a big mystery.. just thought it was interesting about the CMV thing.. what did your dr's say about it?

Hope your starting to feel a little better- hows your headache?

Kathy the hemoglobin being at 11 is why you are so tired, was it low anytime In the past (before the IVIG) ? You effectively are running around with 40% less blood (it should be about 15 to 16), that will exhaust anyone, when I was at 11 2 weeks ago I felt like I was made out of mud...

The IVIG antibodies stay in your system about 35 days. In my case it took 30 days for the hemoglobin to start returning to normal. Kathie I would see if you can talk to a hematologist. Hemolysis is so rare few doctors besides a hematologist know what to look for. Why do they suspect a GI bleed? Are there signs or symptoms of that?

Joe

Kathie

Just wanted to add my support and good wishes. So sorry for what you are going through.
You are in my prayers. Good luck
Sandy

Just had more blood work drawn again this morning. I should have the results on Monday. I think I will be heading to a hematologist. I just got the manual CBC differential and it said there were a moderate amount of spherocytes. I looked that up and it means an auto-immune hemolytic anemia. Finally something someone will treat hopefully. I still have not had a call back from the neurologist. Even the GP did not mention anything about the spherocytes. I will call on Monday and get them to release the blood test and get a referral to a hematologist. If the hemoglobin is under 10, I will go to the ER.

Nobody is treating the CMV and I am not sure if I should be worried. CMV is only a concern in pregnant women or immunosuppressed patients like me on high dose steroids. It is suppose to be treated by anti-viral meds in immuno-compromised patients. I will pursue that on Monday too.

Just for reference when you have a bad reaction to IVIG, who treats the problem, your GP or the neuro that ordered the IVIG?

Besides Joe, has anyone developed a hemolytic anemia?

thanks
kathie

Kathy, Every time I think I'm getting close to having some understanding of the American health system, I get lost again. Will you help me with this? My question is: Why are you or others, having to orchestrate
your own appointments with specialists? Doesn't the PCP do this for you? As well, doesn't the PCP go over your test results with you?

Thanks in advance!!

Not in the american health care system. Doctors do not like to tread on each other territory. The GP position is, the doctor who ordered the test should monitor the results, informed the patient and treat or refer the patient.

The attending of the substitute neuro ordered the tests. All the tests came back abnormal. I can not get an answer from the substitute attending, the substitute neuro or the neuro who is now back from vacation. The GP said he is unqualified to deal with the complicated case and does not know how to treat reactions to IVIG. So when I wrangled an appointment with the GP and cried that all my tests are abnormal, I am so weak I fell down the stairs, they finally looked at the blood work and issued referrals to specialist - Physical therapy evaluation for in home safety, gastroenterologist for the chronic diarrhea and another endocrinologist and local neurologist to be the go-between. Of course I am on the waiting list for 1-2 month for some of these specialist, even with MG, abnormal blood results and nodules on my thyroid.

I know the GP is thinking GI bleed, but I am almost certain it is an auto-immune hemolytic anemia. My only concern is, it is more than a week since the last blood test and how much farther has my hemoglobin dropped.

kathie

You probably need to consider getting a new PCP. I feel certain that mine would have done better.

Thanks, Kathie, I really appreciate that! ..."Doctors do not like to tread on each other's territory!" Actually, I think that's global.