Mandy, There was one more thing I thought about. If your liver and kidneys aren't clearing drugs out of your body well, then drugs like Pred might build up and make you worse instead of better. I can't say for sure if that is what's going on but you need to have a doctor keep ALL of this in mind while taking care of you.

I don't know why but hemochromatosis popped into my mind too. Has anyone done an anemia profile on you, including ferritin, iron binding capacity, transferrin saturation, etc.? Plus folic acid and B12.

Hang in there.

Annie

Hey Annie,

Sorry for the delay, I haven't been feeling well. Sounds like you haven't been either. How are you feeling today?

I wanted to address some of your questions and thoughts from your last post. Thanks again for taking so much time to think on this and help me with suggestions, it really means alot.

1. I had a doc run a lyme disease panel back in October. It was western blot, so I'm guessing it was accurate at the time. Negative.

2. You are exactly right in suspecting Guillain-Barre. That was the first thing they thought of when I got to the ER. They did several tests to rule it out. I never lost my reflexes, which made GB unlikely. After the various GB tests, the docs said it was off the table as a possibility.

3. We did a chest CT to look for a pulmonary embolism at one point, but we never did a CT looking for a Thymoma. Do you know if it would have shown up on the lung CT scan? The report doesn't mention anything unusual other than opacities in my lungs. I do realize that thymoma is a risk since those striational antibodies are present.

4. I have most of the labs from my hospital stay. Looks like anything that was sent to an outside lab is not here. I called about this and they said i definitely could have those reports, I'll just have to go back for them.

5. I am concerned about the liver and kidney function too. Glad you said that though because the neurologist i just met with seemed really annoyed that i asked if we could run follow up labs just to make sure everything had stabilized. He made me feel like I was being paranoid about it, so I dropped it. I am going to see a new PCP on Monday, so hopefully he will help me draw some labs, just to check on this. Also, I have contact info for the nephrologist who was helping me in the hospital. They did consider diabetes of one type, and they ran tests, but i was transferred to a different hospital before I ever heard back. I will try to call them to follow up.

6. You asked about lupus testing...is that the ANA test? The ANA tests were negative. I was also checked for ESR sed rates, HIV, West Nile, enterovirus, parvovirus, RPR with titer, rheumatoid factor, HSV type specific (the HSV non specific triggered reactive, strangely), Rickettsial disease panel (Typhus and Rocky Mountain Spotted fever triggered positive. Docs think its false positive, even though it continues to show positive in repeated tests), immunoglobulins, complement, coccidiodes (triggers reactive for ab IGM), EBV (positive for nuclear Ag index and EBNA), toxoplasma, cystericus, india ink, ABF, Crypotococcal, VC igm, and lots more.

7. You asked about polymyositis. I don't think that was specifically checked, but i do see a lab for aldolase, which is normal. I don't specifically see a draw for creatinine kinase and aldolase together. Might be worth looking into though.

8. You are right about testing positive for ACHR antibodies while on prednisone. I am not on it anymore, but when i tested positive for it before, i was on 30mg of pred. I was on a taper, down from 1000mg of solumedrol. You are right..I wonder what my levels would have been without the pred. I am going to see if my PCP will order a repeat of this test, just to see what it shows.

9. Your other post mentioned B12 levels with the brain lesion. I actually had a B12 shot not long before all this happened (my former doc thought it may boost my immune system) so my B12 levels are actually really high. Not sure what they would be without the shot though. Wish I knew.

10. Nobody has checked for hemochromatosis or done an anemia profile. Although my regular labs my RBC counts are within normal range and my folate is also normal. I don't see any check for iron or any of the other things you mentioned. I will definitely look into that if I can.

I think that's all. If I missed something, don't hesitate to ask again. Thanks so much for taking the time to help me brainstorm some of these things. Do you think my PCP is likely to be annoyed if I ask for specific labs? How does it work with sending labs to Mayo? Can any PCP office send the ACHR lab directly to Mayo if i ask them to? I have never had to deal with any of this before, so its all new. I think my family is exhausted of thinking these things over, so I am really on my own. Hoping the new PCP and the Barrow's doc will be willing to help me make a plan for staying on top of things. I'm putting a call into that nephrologist to see what he found on my tests and if he recommends follow up.

Hope you are feeling a little better today. You'll be in my thoughts and prayers. Thanks again,

Mandy

Mandy,
I am so impressed with how on top of this you are! I think it's great that we have this forum where much more informed people can help us through these questions. I want to encourage you in your search for answers. Don't stop!

The more informed we are the better we can cope with the situation.

Sarah

Mandy, I think you should take it easy! And get those new specialty docs.

http://www.lupus.org/webmodules/weba...242&zoneid=524

Lupus is not diagnosed with an ANA test. It is based on certain criteria plus antibody or other tests. Those are the specialized antibody tests in that article. Not all lupus patients test positive for all of them, not unlike MG.

I wonder if you do indeed have an active infection. The IgM is the first one to take care of infection. Have they done your Strep titer (not the swab of the throat but the blood test)?

http://labtestsonline.org/understand...s/aso/tab/test

I hope you get some answers when the tests come back. Thanks for answering all of my questions!

They might be able to look at the thymus on the chest CT depending upon how they did it. I know that sounds stupid because the thymus is in the chest area but you'd have to ask the radiology dept. It sounds like the neuro doesn't want to be bothered with anything other than neuro stuff, which is typical. Save the general stuff for your primary doc. Maybe they can follow up on that.

Again, a neuro won't give a hoot about liver and kidney function! Not their area. A primary doc or a nephrologist should check all of that out again, compare the values and go from there. It's not that neuros don't care but it's not what they do!

ANA tests - especially if you were on Pred - can be normal. Pred's job is to get rid of signs of autoimmune diseases/responses.

B12 shots are usually only 1000 mcg of cyanocobalamin. That has to be processed by your LIVER into methylcobalamin before your body can use it. The rest is urinated out. They can also check your homocysteine and methylmalonic acid, which can be elevated with a deficiency. It's worth the test, especially given your liver function! My homocysteine was elevated during my B12 deficiency in 1999; methylmalonic wasn't done.

B12 is so important, for every cell in the body. And it's not only how much you get but about how much you USE. Classic supply and demand situation. The liver normally stores years of it. But there are those who cannot convert it to methylcobalamin so that the body can use it.

Any doctor can send labs anywhere! What you might consider doing is simply showing all of the positive labs to your primary doctor and saying that you are not comfortable with ZERO followup. You can't exactly do without good liver or kidney function. Those things can be life threatening. My Dad had kidney failure, so I know a lot about that. You may not have "failure" but reduced function requires a diagnosis of WHY and the proper treatment plus a change in diet!

They have to figure out what is going on. The multiple system issues is what made me think lupus or hemochromatosis or something like that.

Don't let them drop the ball. The only way to avoid that is to do what I said before; employ the appropriate specialty docs to all do their part. Then have them send everything to your primary doctor.

I have to say that I'm concerned. If a doctor looks like a deer in some headlights, as it sounds your "hospitalists" did, they are way out of their league. It's not that they don't want to help but you have to realize that very few doctors are taught how to be creative problems solvers. They are more left brain than right and the best doctors involve both sides of the brains so they can be critical thinkers. Yeah, I'm a teacher as well as a designer/writer. Critical thinking/associative thinking makes everyone do their jobs better, not only doctors.

I hope you can pull all of this together and not wear yourself out!

Annie

I'm doing ok. Lots going on and I'm having a hard time in general. Thanks for asking.