NeuroTalk Support Groups - For AliceMD and AnnieB3

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For AliceMD and AnnieB3

Before I go to my regular doctor, I would like your opinion. This may be connected with MG. I don't know. About 7 years ago, I had blood work done (cannot think of the name ? alpha phosphate maybe) and it came back showing signs of muscle/bone cancer. The blood test was fractionated and came back even within normal limits. My regular MD did the test last year before MG diagnoses, and it came back again. She was trying to find out why I had so much pain in my legs. She fractionated it and it came back higher in bone. Hemotologist suggest bone scan. It showed no hot spots. Due to MG being autoimmune, could this have any bearings on other blood tests. I am hestitate to ask to have it redone since I am on Mestinon but wondered if I should give it some thought and ask the doctor. I don't know how much she knows about MG because I have not seen her since diagnosis. Also, I can't remember which one of you gave a quote in one of the sites but would you please requote. It was concerning a lion and lamb in a cage at the zoo and the remark was it was according to how many lambs you are willing to sacrifice. I love this and could not find it on the site. I wanted to save it. Thank you. busy

Busy,

Do you drink soda? Did you know it sucks calcium right out of the bones?

Who you should see if cancer is suspected is a hematologist. Don't let a primary doctor do more than run some basic tests. Hematologists deal with all kinds of cancers and have the expertise to determine if that's what is going on or not.

I think what you were referring to is Alkaline Phosphatase. It can be high for a number of reasons, including liver issues. Your primary doctor can run a few more tests to attempt to determine what's going on. Also, you may have a problem with your parathyroid, which an endocrinologist would help you with.

http://www.fpnotebook.com/gi/lab/AlklnPhsphts.htm

http://www.omnimedicalsearch.com/con...cal-tests.html

http://our.cancer.org/docroot/CRI/co...iagnosed_2.asp

The quote is from Alice, from this thread, in response to what your doctor had said.

http://neurotalk.psychcentral.com/thread143134.html

Quote:

The fact that someone with MG plays football or baseball (or tell their neurologists that they do) does not mean that they have a normal life.
I lived a "normal life" for more then 3 years- I continued to work full time as a physician, bring up my two sons, and even go to conferences abroad. but, my life was very far from normal. I would frequently "crash" in the middle of clinic, or have one of my patients ask why I ran up 8 flight of stairs, instead of taking the elevator (needless to say that I reached this level of shortness of breath just from walking from the elevator to him room). etc.

I recently found out that when my WLE neurologist admitted me for plasmapheresis and steroids, he wrote to the plasmapheresis team that if there is no hospital bed available I could easily have it as an out-patient as I am working and was able to fly over, so obviously am not very ill. At that time I was officially working but not much more then that, and required respiratory support after every minor effort, and obviously during a plane flight.

so, I now take it with a grain of salt when neurologists tell me about their patients that play football and lead a completely normal life.

it is true that you can do almost anything you want with MG, the only question is what is going to be the price. so possibly that avid football player spends a few days in bed after each time in order to recover.

the president of the US came to visit Russia. But, what he was most impressed with was a cage in the zoo in which a wolf and a lamb were happily sitting together. How do you do that? he asked. how did you get those two animals to be in the same cage so peacefully. Oh, this is very easy they replied. it depends on how many lambs you are ready to sacrifice.

The thing with tests is that you have to look in the right place or do the rest test to find the "right" answer. It may take a few tests or a few doctors to get there, but it's better to find out what is going on before your doctor throws a drug or two at the problem.

I hope you can figure out what's going on.

Annie

Thanks Annie, Yes, I love my Pepsi Colas. I have cut down on the amount but still love them. I did not know about the calcium. I am going to speak to her again and ask if we could redo the test since it has been a year and then go from there. But now I have some heads up so I can ask questions. Thanks for the suggestions. There are a big help. busy

I know this varies by person but people with very low vitamin D like I had can have profound pain. The Rheumatologist asked about medication and I said at times I need demerol not just Lortab. She freaked out. She said vit D deficiency can cause pain. She ran the test and sent me a letter saying this was causing my pain and she asked me to immediately start the prescription mega dose vit D.

That was back a few years before we were all so aware of the whole D thing so I think this isnt the case for you but just wanted to put it out there.

Annie59