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Chronic Pain members - Welcome, please introduce yourself
Welcome to the new Chronic Pain group.
I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Why not take a minute and introduce yourself.
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@gailb It was a long road to finding out I had cirrhosis. The first obvious symptom was an HE episode. I was sort of illogical. It was Christmas Eve 2013, our son and daughter were here (both live away -- one in CA, one in NYC) and I said in the middle of dinner that I was going upstairs to take a nap! Right away they knew something was wrong so they called the EMTs and an ambulance, they thought I might be having a stroke or something. By the time I got to the hospital I was fine and it was diagnosed as fatigue, dehydration, low magnesium, and a UTI. Then my PCP called me a couple of weeks later and told me she thought I had Alzheimer's! She was quickly history. I went to a neurologist (who guffawed at her diagnosis) and my hematologist, my new PCP, but no one could figure it out. In the meantime I continued to have these episodes sporadically.
Then I got an episode that put me in the hospital -- I was basically acting mentally catatonic. That episode took about a day and a half to pass. This was a year and four months after my first episode. A hospitalist put the symptoms together and ordered an ammonia test -- if you have liver problems the liver does not filter out toxins like ammonia created when you eat a lot of meat, and it goes to your brain. My ammonia was very high which led to a CT that confirmed cirrhosis. Now why my PCP who is supposedly very good could not put those symptoms together will always plague me. Was it because I never jaundiced? I think he is going to be history next. I had an appointment with him on Friday and as he looked over my info he said I had cirrhosis and cholestasis (a gall bladder problem). I looked at him and asked how could that be, I had a new non-cirrhotic liver and when you get a new liver it does not come with a gall bladder. He couldn't figure that out? He was looking at results from six months prior to my transplant!
Thankfully my transplant took place on September 23rd, for which I will be forever grateful. When they dissected my liver it was almost totally spent so I guess I could have not gone on much longer without a transplant. I was one of only two women with my profile to be transplanted at MGH in the last quarter of 2016 (stats from Compare Transplant Centers). I thank God multiple times daily, there were an incredible number of people praying for me. I must be hearty stock because up until the last month and a half I looked great and was functioning normally except when an HE episode occurred. The last month and a half I bloated up with edema and ascites, I was miserable. I have become passionate about encouraging people to get listed as organ donors. I told my son and daughter that was all I wanted for mother's day, for them to sign up.
So, I hope I haven't gone on too much but that's the whole story. The biggest change I would make would be to go to MGH or one of the other excellent hospitals in Boston, much sooner. After six months of no diagnosis I should have just gone. Despite my other symptoms -- continually decreasing platelet counts, constantly cold, fatigue, blood pressure got lower -- they were looking toward neurological problems. I feel so fortunate that we are only about 60 miles from Boston.
JK
@contentandwell What do you mean by the phase "HE episode"? Teresa
I am so sorry for your suffering. It sounds like you have been through alot. I have learned over the years that there are good doctors and not so good doctors. What does a doctor get when he graduates at the bottom of his class? He gets to become a doctor! I will pray for you and hope you are not suffering. I was wondering what a HE episode is as well.
Best wishes for good days.
Kristine
Hi Kelsey, I am actually in search of answers on behalf of my daughter. I'm hoping to find help for her whether it is a good doctor to go to, ideas on treatment or diagnosis or just connecting her with other people that have similar symptoms. My daughter is 26 and started feeling sick last fall. She has had multiple doctors appointments, several tests run and there seems to be no answers. She is missing a ton of work, has no quality of life and is feeling very helpless and losing hope. There are no answers and no diagnosis. She has swollen lymph nodes, a constant sore throat and feeling like her throat is swollen, lack of appetite, exhaustion, fatigue and pain. I am wondering about chronic fatigue syndrome or fibromyalgia or something like that but not sure. I feel like she is giving up and I'm trying to help. I found this site and thought there may be good information here or at least recommendations of good providers that will search with her for answers. Thanks Kelsey.
Michele
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1 ReactionHello Michele,
I was diagnosed with Fibromyalgia and later learned that I had severe Osteoporosis which caused bone pain and a collapsing spine. The point I want to make is that sometimes doctors use that diagnoses when they don't know what else is going on. I would suggest a good Internal Medicine Doctor since they have alot more schooling. Do not give up. Continue to read about your symptoms and see as many doctors as she needs to. The immediate thought that came to mind was some kind of allergy. I have heard mold can cause problems like you describe but it could be many things but tell her not to give up. I hope for her better days.
Kristine
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1 ReactionHi, Michele. I have great feeling for your daughter, as I have been through much of the same. I do not for a moment think she has the same stuff I do, but the search is much the same. My search for dx has lasted about 50 years. The trick for dx (diagnosis) is to find a series of tests which will steer you on to the right path, and on the road to the proper dx. I.E., I have been tested for, and then ruled out, fibromyalgia, lymphoma, chronic fatigue, and 20 or 30 other diseases of all kinds, from polio to malnutritions. Time after time, some doctor or nurse has said "Eureka!" Then later, they said, "Ooops, sorry....." Finally, 18 months ago, as a sort of off-hand remark, a lab tech with almost no experience happened to say "Ever have your protein tested?" Well, that was the start, and in the intervening time I have my protein, kidneys, heart and everything else tested and retested, and I think I have at least part of the truth. Systemic, primary, amyloidosis of some sort. There is still more testing to do, but I feel good about the start. So my suggestion sounds easy. Ask everyone you see. Start with a basic test of some system(s) that is going bad. Mine were liver, kidney, pancreas, and cardiac. After each test, make lists of what is ruled out, what is ruled possible, and what should come next. Organize...Organize... her medical work. She must take control, and lead the doc around by the ring in the nose. Because I have many of the same symptoms, I would start with SERUM Free Light Chain Assay, 24-hour urine collection and test. If the sFLC returns negative for kappa and lambda proteins, and the urine does the same, that pretty much rules out any serious problems in that area. Then, go to testing for various anemias, etc. Then chronic infections. And so on. At each junction, make decisions based on science, not folk Medicine. That is for later. She can gain control over her own life only if she is willing to make the decisions.
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1 ReactionHi Kristine -
Thanks so much for your response and kind words. I appreciate it and we will keep searching until we have answers. I agree with you and have thought allergy of some sort as well. I hope you are doing okay and have a wonderful Sunday.
Michele
Thank you so much for your response. I agree with you. I know it is a long journey and one that takes diligence and persistence. I appreciate that you shared this with me and also your suggestions. Very helpful. I hope that you are getting answers and feeling better as well. Have a nice weekend and thank you again.
Michele
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1 ReactionMichele~
Has your daughter been tested for Hyper
Parathyroidism? What is her calcium level and parathyroid hormone level?
Kristine~
I am also asking you the same question as Michele. Have you been tested to see about Hyperparathroidism since you have osteoporosis?