sadie168 (@sadie168)

@derbyfever in some cases such as MCTD you can have symptoms of Sjogren’s, but not test positive. I suffer so many issues due to autoimmune diseases. I am headed to MAYO soon myself.

Also, I noticed you mention that you felt better on the IV. Do you know if anyone mentioned if any of your levels were low like magnesium? The story is too long, but I went through a horrific time with my Dad. He was sent to the ER and after two weeks was diagnosed with dementia. I knew this was not the case. It took me moving him to another hospital out of state and several months of me researching, to figure out that he has a defective kidney that wastes all of his magnesium. He had a lot symptoms that you mentioned. He couldn’t walk without falling he was actually having hallucinations. It was so scary that in the end it seemed to be so simple yet no one put it together. I’m not saying this is your issue, but i would have all of your levels checked. The only thing that his body can absorb is one particular brand of magnesium. It really is scary when we know it’s something yet we can’t find answers. Always be your own advocate and don’t give up! Hopefully you will find answers soon!

@marylisa I saw that you go to Emory. A CT showed I have celiac stenosis and I was curious which vascular doctor you see there.

OK it did highlight this time. Of course it did. Lol

@johnbishop thank you. I still don’t see that it highlights the username. I had also checked my settings before emailing. I don’t get emails when my username is mentioned. I actually happened across this post because the title sounded familiar. 🙂 I will figure it out! Everyone is very helpful!

This is concerning to me. I have several autoimmune disorders, scleroderma, endometriosis, pernicious anemia, Raynaud’s,etc. This started happening 18 years ago. It has most definitely been a slow painful progression. I am so tired of hearing “it’s probably your fibromyalgia”. I am so worried about what my undiagnosed conditions have done to me. I am finally taking a leap of faith and going to MAYO in April to hopefully find out what some of my other issues are and to find out what other conditions have been caused by my scleroderma . I am in constant pain daily and I know there are causes for this pain. I am really hoping that instead of hearing fibromyalgia I don’t hear CS instead. As much as I believe these conditions are real, I know there are underlying health issues and I’m hoping they are addressed. That’s why I’m going…It’s all so stressful. Sometimes I wonder if I should just leave the chronic pain off of my symptom list to make sure doctors stay focused on the things that are happening inside of my body.

To clarify, these things did not happen at MAYO. I am however, going there in April. Hoping for answers.

bjh369, in the past year I learned a lot from my tests and doctor appointments. I had an abdominal CT, when the report was sent to my PCP it said, along with other things, that I had severe stenosis of my SMA artery. I was sent to a vascular surgeon who was gearing up for a bypass surgery. Long story short, even though I gave them my disc of the CT he based his information on the report. I wanted more information so I went to another vascular doctor and had an ultrasound done. They have no clue why the radiologist stated I have stenosis of any kind in that artery because I don’t. Years ago I had a brain MRI and the report came back saying there was a mass. When I was sent to a neurosurgeon he said there was no mass. Not that this is true in your case, but apparently not all radiologists are trained to properly read these tests. Also, always ask for test to be put on disc and always get copies of bloodwork. I have learned that even though your levels fall with the labs “normal” limits, they may not be normal for you. I have had undiagnosed pernicious anemia for years because my B12 level was never flagged as low. We truly need to be our own advocates. I wish you luck!

Thank you for posting the article. I can relate to your additional comments as well. I allowed the medical system to frustrate me so badly that I accepted there were no answers, and this was just how my life would be. Last spring I had to force myself to get back into this medical circus. I am taking the leap of faith and going to MAYO in a few weeks. Not having answers has been the most difficult part of this very long journey. I just recently joined connect and it’s sad that people are battling so many challenges, but it’s nice to know I’m not alone.