futurehope Posted January 23, 2006 Report Share Posted January 23, 2006 I had bloodwork done at Mayo a year ago. It was supposed to test for antibodies to ganglionic receptors. They did not do the test correctly and did an Achr anitbody test instead. It was positive. I have had 2 positives total for the same test since then.I went to Hopkins today to see a Neurologist who specializes in Myasthenia Gravis because the positive tests indicate that ailment. He did an EMG test, took many more blood tests, including the one that will be sent to Mayo for the antibodies to ganglionic receptors.I do not currently display MG symptoms according to his EMG test of facial nerves, but I still have MG. It's a good thing to know because I need to inform future doctors prior to surgery and I also realize that I could react poorly to medicines, not to mention, I may start displaying symptoms in the future.For treating the two symptoms that I consider the worst (inability to stand or sit for much length of time, and fatigue), he did the following:Took more bloodwork, tested for a thymoma via a CAT scan (tumor in the thymus) that can cause autoimmune problems as shown by my elevated Achr antibody titer.He said that depending on the outcome of the autoimmune tests done today, if any are positive, he will recommend IVIG to my primary neurologist as a way of helping my symptoms, IV means just that, an IV, and IG means immune globulin, I think. It would help suppress an autoimmune response. It is not permanent, but can be really helpful.Boy, am I hoping we can come up with something that helps me function. My daughter is due to deliver my first grandchild July 1 in Washington state where she lives, and I would LOVE to be able to get out there to see my new grandchild. Just thought I'd let you all know where my "healing journey" is leading.I always am grateful to everyone who shares knowledge, info and ideas on this forum, as it gives me new avenues of exploration on my "journey" for answers. Thanks for sharing. Quote Link to comment Share on other sites More sharing options...
DancingLight Posted January 23, 2006 Report Share Posted January 23, 2006 Thank you for sharing your story...and the latest on your healing journey.Sounds like you found a good doc at Hopkins. I have been very happy with my experiences there...I do hope you will find some relief and help for your symptoms and get to travel to see your grandbaby!!!!Emily Quote Link to comment Share on other sites More sharing options...
morgan617 Posted January 23, 2006 Report Share Posted January 23, 2006 Where in Washington State and congrats by the way! I live in the eastern part of Washington.I hope they can find some answers for you, and get you feeling better. morgan Quote Link to comment Share on other sites More sharing options...
ariella Posted January 24, 2006 Report Share Posted January 24, 2006 hiHappy to hear you have some progress. Although you aren't showing symtoms of MG, the fatigue may very well be a manifestation of your MG and will go away with treatment. Good luck with the IVIG. I hear it does wonders for people. The socialized medicine system in my country won't pay for it, so I'm going the toxic route now with immune suppresants and steroids and am trying to get rid of pneumonia to boot.much healing,ariella Quote Link to comment Share on other sites More sharing options...
futurehope Posted January 24, 2006 Author Report Share Posted January 24, 2006 Hey, Miss Morgan, my daughter lives at Ft. Lewis near Tacoma. Her husband is in the army.Ariella,The doctor said the fatigue could be from the POTS, from the MG (or both, I suppose). After he did the SFEMG of my forehead, and it was negative, I got the impression that he thinks it is NOT the MG.But, you may be right. He just may want to hand me back to my POTS doc, who knows? And, I don't know yet whether or not he WILL recommend the IVIG. If it can help, I would really like to try it. I'll let you know. In three weeks, I'll have blood test results and I'll be seeing my POTS doctor for follow-up. I'll know then whether the IVIG could become a reality.P.S. I hope YOU are feeling better real soon. Quote Link to comment Share on other sites More sharing options...
JacobyD Posted January 24, 2006 Report Share Posted January 24, 2006 Hi futurehope.Sounds like you're getting some decent treatment. I see Dr. Rumbaugh at Hopkins. While they still haven't found the "cause" of my problems, he was the first doc (besides Grubb!) to spend time THINKING about my condition and considering real treatment to help improve the quality of my life. I hope you get some answers, see improvement, and are able to make that trip! Quote Link to comment Share on other sites More sharing options...
futurehope Posted January 24, 2006 Author Report Share Posted January 24, 2006 Hi Dan,Is Dr. Rumbaugh a neurologist?And, yes, I was thrilled that the doctor recommended SOMETHING. I'M usually the one recommending anything (after reading this forum). Quote Link to comment Share on other sites More sharing options...
JacobyD Posted January 24, 2006 Report Share Posted January 24, 2006 Hi again.Yes, he is. A very good one. Here's his info:http://www.neuro.jhmi.edu/profiles/rumbaugh.htmDr. Ben Carson is in his group - one of the world's best. Too bad they couldn't help me though! Jope you're doing great.Dan Quote Link to comment Share on other sites More sharing options...
Sunfish Posted January 25, 2006 Report Share Posted January 25, 2006 future - glad to hear you had a good appt. i had an appt myself monday (at CC) and also had a conversation about my embarking on IVIG...the second time we've discussed it and my doc thinks it's worth a shot. still have to get it covered of course but he thinks he'll be able to. definitely keep us updated.... melissa Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted January 25, 2006 Report Share Posted January 25, 2006 Dan,I tried to e-mail Dr. Rumbaugh , but the e-mail did not go through. Maybe the e-mail on the web page is wrong???How have you been doing lately? I missed seeing you around---- I hope you are doing well.Take Care,Julie :0) Quote Link to comment Share on other sites More sharing options...
goldicedance Posted January 26, 2006 Report Share Posted January 26, 2006 Nancy, Have you tried Mestinon? Mestinon is one of the drugs of choice for MG. Many of us are also taking it for POTS. You might get a double boost!Good luck!Lois Quote Link to comment Share on other sites More sharing options...
futurehope Posted January 27, 2006 Author Report Share Posted January 27, 2006 I've tried a baby dose of Mestinon in liquid form. It gave me a headache until it wore off so I've never tried it again. This doctor did not suggest it again for me. He may suggest an IVIG. I'll let you know. Quote Link to comment Share on other sites More sharing options...
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