Autoimmune diagnosing problem

I haven't noticed any unusual side effects taking Cellcept. I found it amazing that this drug is used for a variety of health issues. I have been taking 2-300mg tablets, twice a day for almost 6 years, which was soon after my first visits with my Mayo rheumatologist. He is treating a number of GPA (Wegeners) patients with great success. To tell you the truth, between the initial Rutuximab infusions and Cellcept, I am almost a new person than I was even 3 years ago.

Now, this med is not a cure, and I could be in remission, and may be for years. Even 20 years ago people with GPA didn't live more than 5-10 years. So, this is a miracle treatment to me, because I fall within that 5 year window.

I am not averse to pickles or tonic water (especially mixed with Kettle One, and a twist) that you mentioned that I can recall. That use to be one of my favorite social cocktails. However, I have stopped drinking. I might have a beer once in a great while. The concoction of meds forbids me any alcohol. Believe you me, though, I've tried a ton of different "remedies" these past few years. However, I don't recall these particular ones. Refresh my memory.

I hope I was able to help. Happy Independence Day.

Im going through the same thing. I also had problems with weakness and falling since 2014. I had just came back from a women's cruise with our church. I was so happy and excited i had a granddaughter who was born while i was on the cruise so i was glad to see her.My daughter gave me to hold her and that was so heart warming. I gave her back to my daughter and i thank God until today. When i gave her back i just fell back and hit my head. I blacked out and didnt know what happened for days. I was in the hospital for 12 days. They were giving so many meds and running so many test and still couldnt find anything everything was normal. Then my family said i was in icu. People from church, my family and best friend came to visit me and i didnt remember seeing or hearing anyone. Only in a bare glance only one i could only feel is my oldest grandson. I told my daughter-in-law i thought i saw him. She said mom he was their praying for you. And i know their were so many other my family told me but he was the only one i could remember. That was the Lord letting me know he would be with me always. I was told by different neurologist so many diagnosises. When i left the hospital and went to rehab the new neurologist said he would run my test all over again. I had confidence in him because he also had a disability. He was paralzed from the waist down. After he ran the test he said i had absence seizures. I didnt believe him because i had seizures before. So he diagnosed with absence seizures. And when i was in the hospital my children said i had 5 seizures. When in the hospital i was told i had heart failure, kidney failure, copd, elevatrd ammonia level, encephalitis and also immune encephalopathy., and sizures. For years after my brain injury it was depression, bioplar and schizophrenia. But so many doctors saifd you dont have any mental issues. Then this neurologist said i had white matter in my brain and then conversion disorder. I thought to myslf ok. I need a second opinion. I've been in the er so many times from falling and legs swelling. I didn't have heart failure and my cardiologist i had for years said i had angina and an enlarge heart. The cardiologist at the mayo clinic said i had neither one only uncontrolled high blood pressure which is controlled now. My kidney failure was actually kidney stones, my ana is positive and my rheumotologist where i live told me nothing or tried to find out why. The mayo clinic is doing that now. I fell in home depot in jan. They said i was hallucinating and they wanted to comit. Then 3 days later they called me an said i had a uti. I've been listening to several people with the same problems. After all my surgeries from falling they said i have neuropathy. I'm going back to the mayo clinic for a spinal tap, consultation, neurology, and to see a pulmonogist. And if their is nothing then i will be taking a test and then seeing a psychologist to help me to control my mind to not fall. I just think this is something new and its just a mystery to the doctors but at least at the mayo clinic they are doing something. But i just turn it over to God because i almost didn't make it so many times but he kept me so many times. I was in cardiac arrest on time but i am still here. So l am truly blessed. And through all thev surgies, hospital admission, er visits, test, rehab i'm still here with all my family and friends. I was going to start working as an occupational therapy assistant. I had a job lined up and i was upset because it took me such a long time for me to get my degree. When one door closes God opens another better then the one you wanted. So now i will be going to school for speech tberapy. I will be giving my testimony at church because the pastors asked me and i will be writing not one book but two. And speaking to others. Now that's what i call a blessing. So don't get discouraged just give it to God he will bring you through.

One more thing to note with the sort of stuff you are experiencing. I have basically the same pile, and have been given many of the same dX. However, I have learned that a dozen different doctors can and will give you two dozen dX for things like this. It can change from day to day. When I first started taking it seriously, I saw ten doctors in five days, and got back 12 different dX. Only one of this still holds (primary systemic hereditary AL with cardiac, pulmonary, renal, thyroid, cerebral and urinary bladder involvement with uti) and I feel I have to continue to question. It is tough to keep track of it.

Thanks much for the update, @bobsconnect; I'm so glad to know that you are doing relatively well.

I was scouring through some of your earlier posts, and came across this message, hence the mention of pickles and tonic water:
You may click on this link, http://mayocl.in/2uMc9wc, but I've also copied it below for your convenience:

"My rheumatologist at Mayo Scottsdale, who I see regularly for my Wegeners & peripheral neuropathy, prescribed 0.125mg of Pramipexole (very small white tablet) twice a day when needed for leg cramps and my restless leg syndrome (RLS). I have used it for over a month and it has relieved the gripping leg/toe/foot cramps at night. When I have an over active day, I know I can expect cramps at night. So I take 2, about an hour before I retire with no cramps/RLS. I don’t take it for minor cramping which I seem to get anyway. My co-pay for the Rx is only $5/months supply which is cheaper than mustard, tonic water (yuk), & pickles (yum). I drink tons of water living in Arizona..."

Please keep us informed of your progress, and/or developments, and continue posting and sharing.
Cheers & Best Wishes

You are so right but when you get diagnoses as heart failure, kidney failure, elevated ammonina which you never had anything with your kidneys, renal failure, parkension disease, seizure, conversion disorder, bipolar, schizophrenia, and i can go on. You just pray you find that one doctor to believe you and in the mean while they are not researching like doctors use to and people didn't have any many illnesses then i definitley think their is something wrong. Where i live we are the 3rd worst medical care in the US. We have the most opiod addiction in the country. I was diagnosed in 1978 with shingles and here they have just started talking about it in the last 7yrs. I know several people who are getting it and they don't know what to do and they are scared. One person i was talking to her mother had it twice and won't even come out the house. I had my genertologist tell me i had a extra vein in my liver and i never heard a doctor say this in my life. I seen this in medical school but never in a human. And this was an older doctor maybe in his late 60's. I always told him i really respect you for telling the truth. In 2015 i had my procedure and they said i had 5 extra veins in my liver. And i am so blessed and thankful to God i can tell the story. He found it in 2014. And none of my doctors ever told me i had any problems with my liver. When i went to my general practice doctor he,told me we don't do test for elevated liver. Well he thought i really was stupid. When i know all your standard labs tells you when there's a problem and you should look further when you see something wrong. Then he put on my chart l had something wrong with my liver 5yrs before we found out. And copies from the lab doesn't show that. So i am so glad i am going to the mayo clinic and i have recommended so many people there and everyone who know my situation said i'm glad you are going there. So there are several people waiting for an opening to be seen.

hello. i want to reply to you to say: you are not the only person who has been treated like this so p;ease do not doubt yourself. there are still many of us who are still trying to be correctly diagnosed so that we may be treated and helped with our pain and suffering. it is a hard long road even when we are diagnosed. hang in there and try to enjoy as much as you can. there are many of us who do care for you. sincerely.

Have they run any tests for ALS? It's hard to diagnose. I'm sorry to hear about your treatment, or really lack of considerate treatment. Were here to give you support as much as we can. Gail B Ledesma

Doctors who work this way are like the prosecutor in a criminal. Some of them seem to be trying to protect the suspected person from the victim, or the jury. Some will actually try to prove the suspected guilty. And even a few just want to find the truth, or Justice.

@brie87144 I have been thinking your issues a lot. After getting into the shower this morning with my wool socks on because I was deep in thought, I feel I have learned something. That is, there are other places some of us might be able to learn from. I am trying the work through a diagnosis for amyloidosis (probably hATTR or AL of some form). I get the same response. "Send me a message if it gets worse." This is no help at all. But there are organizations that do really want to help if they can figure out how they can. Some of these are the groups which are trying to research, develop, sell the medical supplies and equipment to help us deal with these disorders. Such groups are ALNYLAM Pharmaceuticals, and many others. Some are in the USA, most are not. But I it is good to get on the Internet and start asking questions. And most of these companies know who is working on what, so if you contact ALNYLAM, and they don't have any in-company info, perhaps they might have knowledge or lists of orgs that are working in the area. That is how I got on to Mayo, actually. I was referred years ago by the chief cardiologist at OHSU, who said I was to complicated, so he sent me to someone else who sent me to Dan Parker who gave me the idea to go to Mayo. Now, if you are a normal, educated adult, you will take each piece of info to a doctor you trust, and push that Doc into helping you with the thoughts. These men and women are rare, but they do exist. And sometimes the dX comes slowly. I have been working on mine since I became aware that I have multiple cancers and protein deposits and organ failures, almost 20 years ago. So give some calls to some of these large and small Pharmos. You can also look in clinicaltrials.gov for the names of folks working with your symptoms. Also, think about orgs dealing with your issues. For me, some great help has come from Amyloidosis.org, and from Google.com

Great advice @oldkarl - doctors have a lot of different patients and I'm sure they do their best to figure out the problem. I just think there are way too many health issues for one doctor to be an expert on everything...which is what we as patients expect. That's why (in my opinion) we need to help them out by asking a lot of questions and pushing them for answers. More importantly like you say is to be your own advocate and do your own research to find out and learn as much as you can about your health issue.

Thanks again for the information you provided. I know it will help others who are following the discussion.

John