Aa
I have no idea where to even start
Hi everyone,
I've never really considered going forward with online forums but I've been sort of desperate lately for some sort of answer. This all started when I was 18 and a freshman in college. That year I got bronchitis really bad and ended up with strange rashes on my legs and hips but no one could seem to figure out what the heck was going on. I was put on steroid creams and antibiotics and told it was probably just a bug bite of some kind.
For next 10 years I'd get these strange outbreaks with the same rash and flu-like symptoms. My PCP at the time was mystified and continued to try and treat it with steroid creams. Unfortunately, those didn't seem to do anything. Eventually, she put my oral prednisone which seemed to shorten the episodes but not get rid of them. She referred me out to a dermatologist who took biopsies and said it looked like just some sort of uretica vasculitis. I was then referred out to a rheumatologist who decided I had enough symptoms that matched systemic lupus and placed me on a tapering schedule of prednisone and Plaquenil. I took both for 6 months but didn't feel any better.
I then moved from Seattle to Phoenix and decided I'd had enough of taking medications without a solid diagnosis. I met with the doctors at Mayo clinic (and was overwhelmed with how wonderful that place was). I was cycled through a number of doctors, all of whom were baffled. They asked me to discontinue all medication thinking that maybe it was an NSAID allergy or something of the same. I stopped everything but nothing got better. I went through additional biopsies (which were consistent with my previous one), a colonoscopy, a endoscopy, and visit after visit after visit with specialists. No one seemed to know what it was. I even had, at one point, most of the dermatology department in to look at the rash. Ultimately, it was agreed that prednisone seemed to help decrease the length of the episodes but there wasn't really much else to go off of. I was a medical mystery. They just watched me and waited for something to show up in my blood results or in my biopsies or in something.
And then my gall bladder went. I had surgery and things were fine for a long while. I briefly thought that maybe it was my gall bladder all along. Maybe it was the cause of everything and now that it was gone I'd be good to go. They submitted it for biopsies and it was consistent with all the other ones ("unusual lymphocitic tissue") but everyone seemed good with the results and I was feeling much better so it was all good.
A few months later I got mono (at 27...the kissing disease at 27...how embarrassing). With the mono came the rash. For the next few months I just kept getting things. The mono lasted weeks and right when I felt healthy again I got strep with the rash. The strep lasted a week and I started to be on the mend and then boom, tonsillitis. They told me this was common for mono...that you basically get everything and are miserable for 6-12 months. And I was. My neck swelled up, it hurt to eat, the sleep, to just be still. But what was way worse than that was that I thought I had finished with the rash and it showed up once again.
And now I'm here to try and figure out what the heck is going on. My insurance has changed and I can no longer go to Mayo (which I'm devastated about). My new PCP has no clue what to do with me. The mono was a year ago (last March) and I'm still feeling like something isn't right. I've had outbreaks of the rash consistently since then (pretty much every month, sometimes twice a month). I've been treating it with the pred but it doesn't seem to be as helpful as it used to. The reason I'm seeking advice or even just guidance is because things seem to have gotten worse and there's no explanation and no end in sight.
Within the last few months I've gained 30lbs (without changing my diet or exercise routine). I eat relatively healthy (sure I enjoy a burger every now and then but I'm most definitely not a fast food junkie). I exercise 2-3 times a week and walk an average of 4 miles every day at work alone. I hike on the weekends during the fall and winter and swim during the summer and spring. In January I weighed 144 at my doctor's office and when I was weighed again at the end of March I weighed 160. I have no idea why because I haven't changed anything. I'm exhausted all the time and not just a little bit but so tired that I'll get up on a Saturday at my usual 8am, have a bowl of cereal and then fall asleep on the couch immediately after I eat it for another 2-3 hours. I have night sweats (but I've had those for years) they just seem to be worse. My lymph nodes around my neck don't seem to have gotten any better since the mono and are still painful and swollen. There's a tingling, especially at night when I'm lying in bed, in my hands. And most recently, I've been experiencing this intense pain around my collarbone when I drink mixed drinks. My doctor ran some blood tests and besides a low thyroid level there was nothing else that pointed to anything concerning. When he tested it again a month later it came back normal. He's recommended I continue with my prednisone prn for the rash and vitamins for all the other symptoms. I've been trying to do both to make myself feel better but it doesn't seem to be working.
I'm sorry for the novel but this whole thing has been going on for almost 10 years now and I'm desperate for some sort of answer (or if not an answer than maybe just a suggestion on where to go from here). My doctors at Mayo were amazing purely because they treated me with respect and were insightful enough to admit when they didn't have a clue. I'm scheduled to go back to my PCP for another round of blood tests at the end of this month. I've been told to get my cortisol levels checked in addition to my thyroid because of my long term history of steroid use. If anyone has any other suggestions of what to get tested I'd be more than happy to hear it. Or if anyone would like to take a more in depth look at my case I'd absolutely be willing to share what I know and what I don't know. I just want to feel like a normal 28 year old.
I've never really considered going forward with online forums but I've been sort of desperate lately for some sort of answer. This all started when I was 18 and a freshman in college. That year I got bronchitis really bad and ended up with strange rashes on my legs and hips but no one could seem to figure out what the heck was going on. I was put on steroid creams and antibiotics and told it was probably just a bug bite of some kind.
For next 10 years I'd get these strange outbreaks with the same rash and flu-like symptoms. My PCP at the time was mystified and continued to try and treat it with steroid creams. Unfortunately, those didn't seem to do anything. Eventually, she put my oral prednisone which seemed to shorten the episodes but not get rid of them. She referred me out to a dermatologist who took biopsies and said it looked like just some sort of uretica vasculitis. I was then referred out to a rheumatologist who decided I had enough symptoms that matched systemic lupus and placed me on a tapering schedule of prednisone and Plaquenil. I took both for 6 months but didn't feel any better.
I then moved from Seattle to Phoenix and decided I'd had enough of taking medications without a solid diagnosis. I met with the doctors at Mayo clinic (and was overwhelmed with how wonderful that place was). I was cycled through a number of doctors, all of whom were baffled. They asked me to discontinue all medication thinking that maybe it was an NSAID allergy or something of the same. I stopped everything but nothing got better. I went through additional biopsies (which were consistent with my previous one), a colonoscopy, a endoscopy, and visit after visit after visit with specialists. No one seemed to know what it was. I even had, at one point, most of the dermatology department in to look at the rash. Ultimately, it was agreed that prednisone seemed to help decrease the length of the episodes but there wasn't really much else to go off of. I was a medical mystery. They just watched me and waited for something to show up in my blood results or in my biopsies or in something.
And then my gall bladder went. I had surgery and things were fine for a long while. I briefly thought that maybe it was my gall bladder all along. Maybe it was the cause of everything and now that it was gone I'd be good to go. They submitted it for biopsies and it was consistent with all the other ones ("unusual lymphocitic tissue") but everyone seemed good with the results and I was feeling much better so it was all good.
A few months later I got mono (at 27...the kissing disease at 27...how embarrassing). With the mono came the rash. For the next few months I just kept getting things. The mono lasted weeks and right when I felt healthy again I got strep with the rash. The strep lasted a week and I started to be on the mend and then boom, tonsillitis. They told me this was common for mono...that you basically get everything and are miserable for 6-12 months. And I was. My neck swelled up, it hurt to eat, the sleep, to just be still. But what was way worse than that was that I thought I had finished with the rash and it showed up once again.
And now I'm here to try and figure out what the heck is going on. My insurance has changed and I can no longer go to Mayo (which I'm devastated about). My new PCP has no clue what to do with me. The mono was a year ago (last March) and I'm still feeling like something isn't right. I've had outbreaks of the rash consistently since then (pretty much every month, sometimes twice a month). I've been treating it with the pred but it doesn't seem to be as helpful as it used to. The reason I'm seeking advice or even just guidance is because things seem to have gotten worse and there's no explanation and no end in sight.
Within the last few months I've gained 30lbs (without changing my diet or exercise routine). I eat relatively healthy (sure I enjoy a burger every now and then but I'm most definitely not a fast food junkie). I exercise 2-3 times a week and walk an average of 4 miles every day at work alone. I hike on the weekends during the fall and winter and swim during the summer and spring. In January I weighed 144 at my doctor's office and when I was weighed again at the end of March I weighed 160. I have no idea why because I haven't changed anything. I'm exhausted all the time and not just a little bit but so tired that I'll get up on a Saturday at my usual 8am, have a bowl of cereal and then fall asleep on the couch immediately after I eat it for another 2-3 hours. I have night sweats (but I've had those for years) they just seem to be worse. My lymph nodes around my neck don't seem to have gotten any better since the mono and are still painful and swollen. There's a tingling, especially at night when I'm lying in bed, in my hands. And most recently, I've been experiencing this intense pain around my collarbone when I drink mixed drinks. My doctor ran some blood tests and besides a low thyroid level there was nothing else that pointed to anything concerning. When he tested it again a month later it came back normal. He's recommended I continue with my prednisone prn for the rash and vitamins for all the other symptoms. I've been trying to do both to make myself feel better but it doesn't seem to be working.
I'm sorry for the novel but this whole thing has been going on for almost 10 years now and I'm desperate for some sort of answer (or if not an answer than maybe just a suggestion on where to go from here). My doctors at Mayo were amazing purely because they treated me with respect and were insightful enough to admit when they didn't have a clue. I'm scheduled to go back to my PCP for another round of blood tests at the end of this month. I've been told to get my cortisol levels checked in addition to my thyroid because of my long term history of steroid use. If anyone has any other suggestions of what to get tested I'd be more than happy to hear it. Or if anyone would like to take a more in depth look at my case I'd absolutely be willing to share what I know and what I don't know. I just want to feel like a normal 28 year old.
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