Thanks I'm suffering pretty bad....
I wake up in the morning crying feeling like my head was slammed in a car door or something. When i go to sleep i feel really bad and scared that im going to have a seizure because it feels like my...
Hi, I have Primary Biliary Cirrhosis and Myasthenia Gravis. I am at risk for PD. I was researching vitamins to help myasthenia gravis and found out that for decades researchers have known that...
I have myasthenia gravis and have those symptoms only many more. I have double vision that worsens with fatigue. I have sudden loss of muscle control especially with repeated motions. That is because...
Im so sorry to hear about Connie. She was active when I last was....
Maybe not drinking would be a good idea. I did that and have never regretted it. Perhaps with the Gilberts drinking is just too much. You can get a really good feeling from being really healthy. On a...
Make sure that they tested you fully for all types of autoimmune hepatitis. If you can get a copy of the labs so you know whats been tested. Make sure that they tested your AMA AntiMitochondrial...
Hi there, I havent posted in quite a long time. I have hereditary Primary Biliary Cirrhosis with Sjogrens, Polyglandular dysyfunction, Pulmonary Fibrosis and now Myasthenia Gravis. While my immune...
Hope you feel better Lynwood!...
Hi its been a while but I thought id let u know about how my sjogrens went into remission. My sjogrens was secondary sjogrens, caused by primary biliary cirrhosis, an autoimmune liver disease. A...
I was not positive for the sjogrens auto antibodies either. They are calling it secondary sjogrens. I definitely have sjogrens, or something just like it. I've been getting steadily worse, I have...
I grew up outside of Lyme ct in Brookfield and got quite sick there with a throat infection that did not respond to penicillin. I climbed trees and roamed outside so much that tick bites were common...
Thanks for the reply Debbie. I called and left a message with his neurologist. My son swears its the medicine he is on, and he's drug tested clean. Epilepsy is horrible. He stumbles and staggers at...
Hi Connie, I'm glad you are doing well and sorry you are having these problems. I have had a horrible time at home with my son and me. I think of you and pray for you. Yeah, Florida has gotten nuts,...
Hi--I became acutely ill 20 years ago and still do not have a good diagnosis or sufficient treatment due to lack of diagnosis. I was told that I either had some form of AI hep or hep C 20 years ago...
have you seen a good gastroenterologist? White blood cells are also made by the spleen. There are other conditions that can cause these problems, and if the oncologist has cleared you, then you may...
I agree with Elsie, that is how everyone gets approved pretty much. Everyone gets denied, but once you are denied you can get an attorney and they are the ones who get you approved for ssd. Some...
Hey LadyBug I haven't been on for a while, but also have liver problems. They won't give me MTX because I have liver problems, not an option for me. Some of the symptoms you describe remind me of...
Debbie--I'm sorry you are having this problem. I am going through a similar thing. My son has epilepsy and also gets syncope and has had grand mal seizures in the past. He is on dilantin and was...
Yeah, I think alot of them now are realizing this, the problem is can they isolate the organisms that cause the problem and can it be treated. Like they know that TB can cause the development of...
Hi--I was googling articles about periodontal disease and ran across numerous recent and on-going research into links between periodontal disease and RA and Hashi's thyroiditis and there are probably...
I found out that there is a court case pending on this exact thing with CMS (medicare) for people with sjogrens and scleroderma to be covered through medicare for tooth breakage or extractions again...
Hi--Haven't been on for a while, been winding down lately, can't seem to get health under control. Can you tell me if medicare will pay for oral surgery for your jaw getting smaller? I got bad...
I take plaquenil and it works great for me with little to no side effects. Some people have a completely different experience. It is a good drug and there is some interest in it as some research...
This to, I have aih and severe nash and all kinds of gi problems, they say not crohns but my mom has it, lots of bloating and gi trouble. I have found that eggs and fatty foods cause more bloating...
Thank you so much for the update. I have been tangled up in some stuff with my mom, she just had a total pancreatectomy and had a stroke and some other stuff and finally got my Mayo appts. I was...
Thanks for everything and the links! My laptop screen died so I was away. I think 18 years is a long time to go without dx, and all my ai diseases and other conditions all started at once. I am doing...
Yeah, I don't know if things will match up but I may be down there for something else by that time! Becoming, they still haven't figured out what kind of AI liver disease I have because I have...
I go to Mayo Jacksonville FL. I am not a transplant patient though but gi/hepatology at this point....
bostonmike, i have something called a retroaortic left renal vein, a result of longterm illness. Mayo was the only place to note it as I go through liver transplant for my hepatology. It can cause...
thanks dany and boston mike-- Yeah I have the electrolyte imbalance problem because for some reason I need a thiazide diuretic for my fluid retention. My liver doc thinks my kidneys may go before my...
I have autoimmune hep and sjogrens and diabetes and thyroid problems and take hctz for hypertension I assume and sometimes I get these tired spells where I'm suddenly just so tired/weak feeling I...
Thought you might get a chuckle: I've got a cold sore now, A yeast infection too, A strange and mysterious rash, And my fingers are turning blue I roll my basket of goodies, up to the checkout line,...
Smurfy--I know this is late in coming but call 911 if you feel totally out of it. They can help figure out what is up and maybe the emts can just check you out. Another option is to call poison...
Hey dany, thanks for that. I don't take lasix anymore, but take Klonopin, late at night before bed a few hours after my second and last dose of Urso with dinner. I had a weird reaction to my...
I second that and am glad to hear you are okay....
Try checking out some of these threads on moderate fat vs low fat: http://www.sciencedaily.com/releases/2004/02/040202070609.htm...
Hi Carol, I hope Mike gets better soon. My mom got those mouth sores that lasted months at a time when she was on steroids for ulcerative colitis. She also was sick with pancreatic disease at the...
I'm glad he is doing better and my thoughts and prayers are with you all....
Hey Dany-- Thanks so much! Well, its not just me then. My electrolytes are always out of whack because I need to take HCTZ a thiazide diuretic that lowers your potassium. Tried lasix and started to...
Shingles and staph seem to cause other problems with the nervous system. I have tight muscles and get prescription Voltaren muscle relaxer gel for it, but also use an over the counter herbal gel made...
Well, you still might want to get your liver levels tested. Sometimes meds will cause this and they can switch around how you take them or whatever they need to do. It may be working up to something...
Hi directprep-- I had a similar problem years ago. other diseases besides lupus and the related autoimmune diseases can cause your ana to be elevated. Liver problems can be one. The liver can get...
Hey sparklecity-- Do you have asthma? Asthma tends to run with all this mess and with the thyroid problems. The reason I ask is that I had a pulmonologist run the sleep study on me and he found I had...
Itching is the worst. I have had itching reactions that have ranged from no hives or visible irritation or problems to hives to flushed areas, to red lines. The itching you describe is like what I...
Hi--I have been having some weird spells lately and wondered if this is part of my liver diseases--PBC and some type of AIH to be determined. I have had spells with sensations of my body or part of...
Hi-- I haven't been by for a while. I am on Urso, have sjogrens, hashis and severe steatohepatitis, highly positive AMA but low alk phosphotase so they are withholding a pbc diagnosis despite false...
Thanks Dany, Connie, and David. Because you let me know it wasn't the meds, I went in and you are right, it isnt the meds. I finally figured it out after being up all night with bad heartburn. It...
Hi, I am feeling really bad and will probably go to er tomorrow. I am dizzy and my parotid glands under my jaw are really bad and sore throat. My lymph nodes in my chest and along my ribs on the...
Hi-- I recently started Ursodiol and I am having constant stomach pain and gas, but not sure if that is from the Ursodiol or maybe just liver getting worse. I have to take one 300mg cap three times a...