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Anyone here in Utah? Anyone with Elhers Danlos?
I’m native to Utah, California raised but currently back in Utah. I started getting sick before the pandemic but that really didn’t help my diagnosis and moving in the middle of diagnosis. Seriously my story is a mess and I don’t have energy to spit it all out. I just got an appointment with an infectious disease doctor at the University of Utah. Apparently, they are the only people in the state that take my insurance (besides 3 other doctors that denied me)and there was a mess up with the original referral at my doctors office. My pulmonologist doctors are awesome. The referral was sent without my data and took longer than it should’ve anyway I finally got an appointment but it felt like I wasn’t going to be able to be seen. I looked up clinical trials at the NIH! I felt desperate. The last year I’ve been in bed and basically quarantined myself because I thought I had TB. People haven’t believed me that I’ve been sick. I did test positive for TB in San Diego but my dr. Said that I was latent and not infectious. I continued to get sick and even sicker. Was hospitalized for superior mesenteric syndrome. Didn’t realize the nodules were new on the ct. Discovered it later in bed as my chest hurt and I struggled to breathe. I finally managed to advocate for myself and get CT’s done. The tree and infiltrates have traveled to my lower lobe, which were previously just in my middle lobe and into the left lingula. Did the whole works. Got a BAL, PFT and blood work. It could be worse. I’m so happy to finally know what is wrong with me. I’ve been sick for so long. I get edema, uti’s, kidney stones, hydronephrosis, migraines, I have scoliosis, Grade 1 anterolisthesis at L4-5 secondary to bilateral L4 pars defects… and seriously if I keep going I’m gonna sound crazy because I’m a woman and I just have anxiety. It’s all in my head, right? Oh my gosh seriously that’s how people have treated me. I don’t care how rude I sound. I have been through hell! I’m so tired. I almost gave up. I was at the end of my rope. I hope I can make it through treatment. I already know I get seriously ill on antibiotics. Idk either way I’m not gonna be sick. Just venting to people that understand how many buckets of tears I’ve wasted.
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Darlindawn, you have shared your history with the right group. This forum has sensitive, intelligent, believing individuals who will not judge you but listen and offer suggestions….some may help…others not.
Your health history is complicated…with Ehlers Danlos…the inherited connective tissue disease. Most folks are not aware that connective tissue is bones, blood, cartilage and tissue that are affected. You are suffering tremendously.
You mention CT scans that revealed nodules. Has the ID doctors diagnosed anything else? NTMB? MAC?
Once you find the right team of ID & Pulmo doctores that can see your bigger picture…perhaps you will find the best treatment plan.
You are not crazy…you are ill. Reach out to this forum with questions and new developments…you will find support.
Regina
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3 ReactionsAgree with Regina!
I have EDS, broncechtisis and treatment resistant MAC. It is an incredible challenge. You're not crazy. I am a nurse and it took many years to get diagnosed and even longer to start treatment. I have been dismissed many times by practicioners.
You had the BAL done, any results yet (it takes a long time to grow)?
I found it very helpful to have PT on my ribs/sholders/neck, the inflammation is always causing subluxations. I'm in the Baltimore area. My PT is an EDS specialist, but if you can't find one, have a regular PT work on all musculoskeletal areas involved in breating. Not only will it decrease your pain, but it will improve your respiratory function.
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4 ReactionsYes I have MAC and that other long word in the title of this group. (I always forget how to say it). I have hyper inflation as well. I also noticed on my test results that I have gram negative bacilli too. Not sure what kind but can’t those be even worse? I appreciate your sympathy. It is hard when no one around me understands.
Oh my goodness my neck and shoulders and ribs hurt all the time! The worse though is my back and my sternum. My doctor told me yesterday that I had costochondritis. I haven’t been told that since I was like 21 but it makes sense. I was in PT for my shoulders recently, but I got a very bad staph Infection from either the hot towel they would place on my shoulders and neck or the table I was laying on. I felt it come on quick. I got scared and never went back. I have had agoraphobia since the pandemic and every time I try to be brave and do something for myself it seems to bite me in the bum. I can’t go to family gatherings anymore. I get sick. I have had very hard time getting to the doctors. Crazy thing is I keep thinking back to how I got the worst infection a dentist had ever seen. I had gone to my normal tent to get a cavity filled. It was small tiny nothing I never even noticed it didn’t bother me. Didn’t hurt me. I left to go home to San Diego. I want to the dentist in Utah when I saw my parents couple days later it started to hurt really bad. I called him and he gave me a prescription For some antibiotics and some pain medication. I had a trip later planned with my mom to go to a workshop up in Mendocino. I tough it out even though it was not getting any better and the pain was getting worse and went. While in Mendocino, the pain goes so bad the pain medication was not working at all in the middle of the night I decided to take myself to the emergency room because I could not handle it any longer. They gave me an IV of antibiotics some pain medication but I think they thought I was there because I was a drug addict unfortunately. I had to wait for my mom to wake up for her to come get me, there was nothing they could do. They weren’t a Dentist but luckily nice lady overheard everything and came out and said I know a gentleman that can help you. He often works on his days off because it was a Saturday we were able to get a hold of him to go to his office. He was able to drill into my mouth. He said in his 40 years as a dentist he had never seen an infection as bad as mine was! He wasn’t able to clear it all out so I had to go see an endodontist. I’m not kidding you the Amount of antibiotics I was on and all the different kinds and the fact that it did nothing for me worries me. To this day I wonder is this where it all began. Who knows right? I have major fears of the dentist and I need to go so badly right now.