Kris4444

Thanks for the encouragement. My life is miserable, I am miserable. I know it's the right thing to do. Unfortunately, we live paycheck to paycheck so missing any income for any length of time is going to be a major issue.

Some news: My nighttime cortisol levels were normal. Endo is now looking for a carcinoid tumor rather than Cushing's. I had an appointment today with my EDS doctor and also took my 12 year old daughter to be evaluated, she has been complaining of knee pain and "tingly legs" when she goes from sitting to standing. She was diagnosed with Hyper-mobile EDS today...I pray that we caught things early and with the proper education we can keep her from ending up like me. They are sending her to be evaluated by the EDS PT people and then she can work with a sports medicine PT place since she is so active in sports. It hasn't really sunk in yet that she may go through what I'm going through. I pray to God she doesn't. As for me, my doctor thinks it's time for me to file for disability. He said that taking care of myself has become a full time job. He said I can file while I am still working and that they may ask for accommodations from my employer which will most likely be rejected but that they respect those of us who try to keep working. I've heard the complete opposite before so I am torn on what to do. He did suggest getting a lawyer involved and I did get a number for one today. He also explained my hyperglycemia issues and my weird hypo type response to food. He explained that it has to do with my hyperadrenergic state. That when we eat the blood pools to the GI system to help it digest. Because I have EDS, my vessels are lax and so the blood gets there quickly, taking blood away from the brain too quickly causing the sleepy feeling and confusion. When my messed up system sees that it has to digest food, it sends out adrenaline instead of insulin, I flush and everything goes haywire. Sounds about right. He said that my old Endo probably isn't familiar with hyperadrenergic states and how they affect people when they eat which is why he said he has never heard of such a thing. I found out from my Rheumy today that I have had positive ANA twice now (although low and considered borderline) and that my issues with the sun are not from any of my meds but due to the autoimmune component. My pattern was nucleolar both times. Also my C4 complement has been consistently low. I believe that my immunologist has commented on that as well. Lots to think about. Not sure if the hubby is on board with the disability idea but I don't know how much longer I can keep this up. Oh and the EDS doc says he still thinks there is mast cell issues going on and that they won't find a tumor. He said that doctors are not testing properly for mast cell. Tryptase doesn't matter. He is going to contact one of his specialists in mast cell to find out what tests we should run to see if that might be the problem. He said it's really common with us EDsers.

Sorry about the migraine. I understand completely. Do you work? I am thinking about disability but not sure if I would qualify. I'm sitting at the lab now. I forgot my book.

Lol. I often feel like I don't know what I'm talking about too. I've been on plaquinel for years to treat whatever this is. Most if the autoimmune diseases are treated the same. I've tried a lot of different prescriptions but now I'd like to get off of everything for a while. I don't know what would happen if they tested me after sun exposure. It's so weird, I used to tan beautifully. I was outside as long as everyone else. No one else is burned or even pink. Just me. When I woke up this morning the tops of my hands were bright red and very swollen. My lips as well. My face had the malar rash and my neck is very red. My headache is unbearable. 800 mg ibruprophin hasn't touched it. I've slept most of the day. I'd give anything to get my life back.

Lupus is one of the 3 connective tissue diseases that are part of my UCTD (undifferentiated connective tissue disease). I get the butterfly rash, sun sensitivity and joint pain. The Raynaud's phenomenon and GI issues point to Scleroderma. The dry mouth and eyes, Sjogren's. I have had repeated negative ANA except one time in which it was a very low positive nucleolear pattern. It was years ago and I've been negative since.

Hi Sarah. Sorry to hear you've had a bad week. What's going on? I'm ok. I was outside in the sun all day at my daughter's horse show. I got sunburnt and so I'm very swollen and have a major headache and joint pain. Gotta love autoimmune disease. I hope things get better for you. Hang in there! -Kris

Cbakl, Our stories do sound alike. What were some of your symptoms? Flushing? I'm doing another 24 hr urine today. This one to look for 5-HIAA which I'm sure I've done before. I'm sure it will be normal. I drop it off tomorrow at the lab and then I will do a glucose tolerance test.the glucose test will be interesting for me as I've been having bouts of hyperglycemia after eating. I'm still waiting for the results of the cortisol salvia tests. please let me know what your results are as I am interested since our stories are so much alike. Good luck. I hope they figure this out for you.

I got rid of most dairy and that helped a lot with the bloating. I love almond milk. I guess I'll just have to bite the bullet and do it. Thanks for the support and advice.

Not to mention that with my GP and colonic inertia, I don't digest fruits and veggies well so what would I eat Lol?

Sue, I feel like if I had a grocery check list to start with that maybe I could figure it out. Gluten free has been suggested to me on more than one occasion. It just seems so overwhelming.

I totally lack the discipline! AND I think it would suck big-time! I have children and a husband to feed so it would mean separate meals. No way they could do the gluten free with me, they would be miserable. I already have to limit the types of foods I eat due to gastroparesis and colonic inertia. My entire GI system is a mess so I have be be careful. Many days I only eat one meal and supplement with protein drinks. I have scheduled my glucose tolerance test and turning in of my 24 hour urine for next Monday. Fun-fun, not.

Lol. My grandma is 97. She gets very concerned and would be dwelling on the negative. Just not worth having her fret all day. Plus it will be a normal test like it always is. I've decided to get off as much medication as possible. My rheumy wants me to wait until we are fine testing with the endo. I guess that makes sense but that's 4-6 more weeks....I just want to feel better. I've gotten off the meds before only to end up back on them again. Ugh. Time to try something new. Thinking about gluten free and homeopathy.

Wow potluck! How are you now and what are they doing for your symptoms? Hope you are feeling better. Sarah, I was going to do my urine today but we are having a family party for my husband's birthday. I'm not lugging around a container of pee all day lol. I will do it next Sunday. I did complete and mail my salivary cortisol though.

I am doing the urine test on Sunday but in the past it has been negative. I can't demand testing. I can only do what the doctor ordered. Mayo said I would go back to them if a tumor is found. At this point it seems highly unlikely.

I had read up on the test so I knew it was a possibility that it would be high. I wish there was a way to get the scans but sadly it falls on the doctor to order them. We will know more when we get the results of the salivary cortisol. I'm not ready to embrace my pots diagnosis (if that's even what it is). I have decided to try getting off all of my meds with the exception of the ones for my gut. Already sent a letter to my doctor asking for help.

Thank you Sarah! Yes I do have a doctor that I really trust and am very close with. He is my rheumatologist and I don't know what I would do without him. He was the one that worked with Mayo to get me this new endo who is much closer to home then MN! Otherwise I would have had to drive to Mayo by myself and quite frankly I can't afford more time off work and the other expenses. I know what you mean. How sick is it to want to have a tumor??? To me the hyper pots diagnosis has no treatment really other than the Clonidine. I'm still gaining weight, I'm still flushing, I'm hyperglycemic, exhausted all the time. I don't recognize myself, I'm not fun to be around. This *****! There has to be some answers that make sense. I'm starting to wonder if it isn't all the medication that I'm on to treat my autoimmune issues. When I found out about the Prevacid it made me really want to get off of EVERYTHING and just start over. I don't know. Thanks for being there for me.

I have been trying to get scanned. Mayo wanted me admitted and monitored and scanned but we ended up going with this new doctor instead. He says the scans are very expensive so he won't run one until he has more proof on paper. I wish I could be happy with a hyper pots diagnosis. I just feel there is more to it than that.

No problem Sarah. I have had NO scans other than CT scans of head and GI.

Sarah I guess I wouldn't be so concerned if this were the ONLY marker testing high but I have high NE, high nor-metinephrine, high cortisol, sudden onset hyperglycemia when eating, severe flushing, major gi issues and now this. To ME, (silly peon that I am) it seems like there is enough here to warrant a scan. Apparently that is not the case. I did my first cortisol swab test last night. I wonder how those will turn out? With the amount of stress I am under I wouldn't be surprised if those are high too. Not sure about my dopamine levels. I am sure they have been tested. I will look at my records and let you know. Thanks for the support. -Kris

I read the same one Sue! I'm just frustrated. My tests are always abnormal but they always have a reason or say they are high but not high enough. Why would he test me knowing I'm on prevacid? Why wouldn't he suggest re-testing after stopping it for s few weeks? Just chewed on my first swab. Heading to bed now. Thanks for responding.

I got my chromoganin A results back. Lab values are between 1.90-15.00. Mine were 70. Dr. Says its probably due to taking Prevacid. I'm not convinced as my NE, Normetanephrine, cortisol, blood sugar are high and the flushing and now this. What more do they need to do a scan? Still have to do the nighttime cortisol swabs....

My tilt went fine. A little dizzy when they did me up but that's normal I guess. My serotonin levels were actually marked as low last time they were tested....

Thanks ladies. I was seen at Mayo Rochester and my diagnosis on paper is hyper pots but the doctor called it a hyperadrenergic state. I don't know if that is a definite HP diagnosis or not. Yes, they did the full ANS work-up. Everything was normal except I had high norepinephrine and normetinephrine. Now I have gained more weight and am hyperglycemic. No word as to what happens if the tests are negative. I'm thinking padded room and straight jacket lol :-)

My temp stays low around 97. I feel feverish all the time though. I don't get the sore throat often. I do get swollen under my armpits at times. Not sure about the EBV test. They test my titers every month for the IgG and IgM. The IgG one is greatly elevated and has continued to go up. (Lab value 0.00-0.90. Mine is 6.65)

Thanks everyone. Yes they are doing the 5H-IAA. If any of these tests come up positive we will do scans. He didn't want to jump the gun yet as the scans are very expensive. I was hoping to have heard something regarding the CgA by today but no news yet.