[69gto73]

Hi, I am new-in the past week- and have the MG, low t-cells without thymus tumor, Sjogrens Syndrome, Bullous Pemphigoid, Hashimotos and Asthma. My immunologist also keeps checking my "DNA" blood work cause he says I really remind him of a lupus patient.

My question is this. Does anyone have experience with having relatives with MG or low T-cells counts?? I have an aunt to died at the old age of 96 who was also a RN like I am. I remember that she had to quit work in her late 50's due to weakness and infections.

I had to quit work when I was sixty. She also had many infections and was hospitalized many times. She wrote in 1964 to tell me that she was in the hospital very sick and had to have 10 cc's of gammaglobulin. This was back in the days when there wasn't that much lab work done and everything was more or less treated symptomatically.

I look at pictures of her now and I see that she had the droopy eyes and remember her weakness. My immunologist is feeling that this may well be a familial thing because as it comes out there is a lot of autoimmune disease on my dad's side of the family.

I am 69 now and have had autoimmune symptoms since around age 20 and not diagnosed til 2003 and 2006. I am on IVIG, prednisone and plaquenil. Thanks. gto

[pingpongman]

Hi GTO,
Yes my sister and I both have been diagnosed with familial MG. I also have diabetes. My mother had MG and two of her sisters. Also looking at photos of my grandfather he had a droopy eye and also diabetes, so I'm pretty sure he may have had it and it was passed down through his line. So far I have not responded very well to treatment. My sister is scheduled to go to Duke University in June for an a evaluation. As for treatment for familial I believe it's the same for generalized.
Mike

[AnnieB3]

I have some info for you, which may or may not help (see below). The relationship may not be between MG and t cells but a primary issue with the immune system in general.

Does your immunologist think that you have a primary immunodeficiency? With the number of immune states you have, that's not unheard of. Kind of like the "chicken egg" conundrum.

You can't rule out environmental or food toxins when you think of immune issues. Do you live in an area that has a history of toxic issues?

T cells are basically white blood cells. Have you seen a hematologist to explore this more? Have they looked at your blood cells via a peripheral blood smear? It would certainly be worth a 2nd view on this. Hematologists are the blood/cancer guys and deal with these issues in depth.

I personally don't have relatives with MG but do with other AI's.

I hope you can figure out this puzzle, so that you can feel better!

Annie


A little T cell B cell tutorial.

http://users.rcn.com/jkimball.ma.ult...nd_Tcells.html

http://www.ncbi.nlm.nih.gov/pubmed/21922466

http://www.ncbi.nlm.nih.gov/pubmed/21636248

http://www.ncbi.nlm.nih.gov/pubmed/21570918

http://www.fpnotebook.com/id/Immune/PrmryImndfcncy.htm

Has your liver function been checked? Spleen? Have you had an AIDS test?

Mercury can also cause t-cells to undergo apoptosis (cell death).

http://www.ncbi.nlm.nih.gov/pubmed/9600808

[69gto73]

Annie, I have been at this so long that I have lost track of some of my blood work. My doctor is an immunologist, pediatric oncologist, hematologist and some sort of pathologist---I can't remember the exact term--not forensic.

I will have to talk to him about this. I know that he has felt that my immune system is really screwed up and that the t-cell situation is more in depth than it appears. He is just amazed that I am doing as well as I am. He had expected me to come up with the pneumonia that AIDS patients get(can't spell it tonight) and had educated me on that. I have had blood work for some other genetic stuff and have since forgotten the names.

The primary is very possible for sure. I know that he would like(after all these years on IVIG and no terrible infections) to give me a try on imuran at a very, very low dose to see if this would make a difference.He would do lots and lots of blood work. He doesn't make any sudden changes or judgements with out lots of testing and thinking.

I know that I have been ill for close to 50 years really and I am beginning to wonder if I will be still sitting around popping mestinon when I am 80.lol I sure as heck can't imagine that I would live as long as my aunt did. Thanks folks. I'll get back to you when I get some info. gto

[AnnieB3]

Instead of suppressing your immune system even further, which I personally think is whack, how about doing things like juicing, taking Chlorella, good vitamins, super foods, etc.?

I still think that a second pair of eyes on a patient is always a good idea. I'm glad your doctor is so well-versed but let me give you an example. My internist, who I'd known since 1983, kept saying to me in 1997 - 1999 that I was fine. Or, more accurately, that "Nothing is seriously wrong with you." It took four months of research before I believed I knew what was going on. I was so tired that I couldn't stay awake; so tired that I felt sick. When I read the description for pernicious anemia, I was pretty sure I found the answer. Even after that, I had to ask my doctor TWICE to run a simple little test. Sure enough, I had a severe B12 deficiency - basically I was on B12 fumes.

This was a very smart doctor and very nice. Top-rated doctor, in fact. She was not looking at my situation in a fresh way, or in a logical way, frankly. And while she apologized to me, the damage was done. I still have a neuropathy in my lower legs/feet. I didn't have treatment soon enough. I do respect her but she did not do her job as well as she should have.

This may not be your situation but it's always worth a 2nd opinion when you have a more complex situation. Every specialty looks at you with a different "lens" and you might find that a new doctor could unlock something to help you.

Just my opinion.

Annie

[69gto73]

Annie, I want to thank you for the info. I also came back to say that in spite of "bragging up" my doc I have to add that he is about the only doc that I have met who has a very, very small ego. He is extremely humble and extremely kind and I am so lucky to have been referred to him.

He is open to suggestions beyond belief. He has never felt that he has figured me out totally and he has another doc in his practice plus an extremely smart FNP who specialized in immunology/immune-the whole thing- who sees patients. These 3 people have conferences every week and I have been the their topic many times. I have to add that I am better since being on the IVIG and for that I am thankful.

He never wanted to put me on plaquenil cause he said it wasn't strong enough. The last time I saw him he wanted to start the imuran and I had reservations. I told him I had reservations and told him I would make a deal with him. I said to put me on plaquenil and if it doesn't help then we would talk. Well, the plaquenil has helped me a lot. My fatigue (which hasn't been so bad since IVIG) is much, much less and the swelling in my nasopharynx and throat is much less. You can't imagine the problems I have had with that over the past 12 years.

Anyway, thank you all for your input and also for the links. I plan on doing some research and when I am seen again I will ask more questions. I started out doing a lot of research and then in 2009 hubby had lung cancer surgery and 2010 he had a stroke and went into respiratory arrest and was on a vent for a couple of days. He is doing extremely well, but still is sick a lot and in the hospital due to his low IgG levels. I am our caregiver and I have been exhausted the past couple of years. So many doc visits, medical records, phone calls, etc,. We are a sorry pair!!!! Thanks again gto

Mike, Thank you for your info. That was interesting about your family. I have one sister who has some health issues but no autoimmune stuff. My hubby is an autoimmune mess also and his one sibling, a brother, doesn't have anything either. Guess we just have to be born Lucky.

[alice md]

I have to add that he is about the only doc that I have met who has a very, very small ego. He is extremely humble and extremely kind and I am so lucky to have been referred to him.
He is open to suggestions beyond belief. He has never felt that he has figured me out totally.

A few days ago, I had a discussion with a medical student about what is the single trait for a physician, that I think is the most important.

I told him that after quite a few years of practice and also meeting quite a few physicians as a patient, I can say that being humble is probably the most important.

A physician who is truly humble realizes the limitations of medicine, realizes his own limitations and has decided to become a physician because he/she truly cares about other people, and not as an "ego-trip" . He is also more kind and forgiving to himself (as he doesn't think he has to be god) and also to others. He can therefore apologize to patients and try to correct inevitable errors. He can also accept the thoughts and ideas of colleagues and thank them for seeing something he missed or bringing to his attention something he didn't know. This doesn't mean that he doesn't have high standards or doesn't strive to do the best for his patient. Or that he/she doesn't want his work to be appreciated by his patients and colleagues. On the contrary, more times than not such physicians constantly learn from their patients, their colleagues and the medical literature, as they know how much they don't know and how much they still have to learn.

The vast majority of those who I saw as my role models during my training, were like that. And the same applies to my own physicians.

The worst mistakes in my management were done out of shear arrogance.

[69gto73]

Alice, You nailed it! gto