AppleScruffs

I have a lot of trouble regulating my body temperature because of my autonomic dysfunction, and I get fevers a lot. The skin on my fingertips always does this when I get a particularly nasty fever, and then sometimes it will start doing this, and I haven't even realized I've been running fevers...I guess some things you get a little too used to... Maybe this is somehow related to fevers?

I am so sorry you are going through this. I have gastroparesis...it was at its worst several years ago, with nausea and vomiting every day, weight loss, the works. Domperidone has been a godsend for me. I started at 40mg a day, and am down to 10mg and doing well. At the height of my symptoms, my gastro was thinking about doing a procedure where they inject your insides with Botox to keep everything relaxed and allow things to move through...the domperidone ended up being enough for me, but maybe that procedure is something worth researching for you? Good luck with everything and hang in there!

I am not a doctor, and I know nothing about the rest of your medical history, but my doctors once wanted to check me for high eosinophil levels in connection with a condition they thought I might have called Churg-Strauss syndrome (turned out not to have it). Do you have any history of asthma or any nerve pain issues? GI problems? Any history of any kind of vasculitis? Another thought, has anyone ever looked into a possibility of Addison's disease? That is apparently another cause of eosinophilia...and can certainly cause autonomic dysfunction. I hope they figure this out, and that you feel better soon!

Interesting. Pretty much my whole family has a D deficiency...I'm at 12, my brothers both have similar numbers and my mother's number was 5. I wonder if there's a genetic component, or if in my brothers' cases at least, it's from malabsorption due to Crohn's disease. Hmmmm....

Thanks for the responses, guys. I think I'll go ahead and make an appointment with my primary and see about getting serum tryptase looked into. Friedbrain, let us know how your appointment goes. Here's hoping you find some answers

Hi everyone, Looking for any advice from those with some experience with mast cell disorders. I'm being evaluated for possible mitochondrial disease, and have been waiting an agonizing 5 months so far for a skin biopsy report from the Netherlands (fancy, I know). Meanwhile, my mito doc wanted me to get a rheumy workup because of a history of high SED rates and CRPs. Went to a rheumy who brought up mastocytosis. Reading about masto, it would make basically my entire life story from infancy make a whoooole lot of sense. However, when I asked her to run a serum tryptase or urine histamine level in my followup appt, she said "mastocytosis is kind of outside my realm of expertise...see you again in 3 months." Blargh. So, my question is: are serum tryptase or urine histamine tests things that my primary care doc could run on me? Or do I need to seek out a hematologist or an immunologist? I have an immunologist who was treating my 3-times-a-year-or-more pneumonia/bronchitis bouts with allergy shots, which was going great for a bit, but then every single time I got a shot, I ended up wheezing the next day, and within the week had either bronchitis or even pneumonia. I told him that I felt the allergy shots were causing these episodes, and he said they couldn't possibly be the culprit, so I basically just went allergy-shot-AWOL about a year ago, and haven't had a single bout of ANY respiratory illness since (yay for listening to your body). Needless to say, I kind of hesitate to return to this office to pursue testing for masto, and I don't think we have any other immunologists around here. I guess I could go a few towns over to a university medical school and pursue it, but I have been spending so much money and time going to big research depts. in pursuit of the mito idea, I am so tired of the whole mess. Anyhow, any advice appreciated. I can post more on symptoms that lead rheumy to bring this up, but I figured this post was long enough lol...

I don't have a Crohn's DX, but my father and my two brothers do, and one of my brothers seems to have autonomic issues similar to mine... Both my brothers were on Remicade, but one landed in the hospital with an obstruction and they switched him to Cimzia which seems to be going ok. My other brother was on Remicade, but they now suspect he has developed drug-induced lupus from it, and will probably have to discontinue it. Before Remicade, they had both been on steroids, imuran, and others. The imuran was really hard for them to take. My father has had three different bowel resections in the past, but hasn't been on meds for years, and is doing pretty well somehow!

I was so surprised to read this post...I was just told by a metabolic geneticist that she suspects I have some kind of mitochondrial disorder, particularly MNGIE, and I am attempting to get genetic testing done, if insurance will cooperate... I hope things go well for you...keep us updated!

Hey Jump- I'm about to finish up my undergraduate studies this May, and I registered with disability services in the fall, despite the fact that I had been pretty stable for a few months. Come October I had the worst flare up of symptoms I've ever experienced (I'm frankly amazed I was able to stay in school). I am SO glad I had already gotten those papers in order and established all of that with disability services in advance...I didn't need one more thing to worry about! I would highly recommend you just go ahead and do it. Good luck in school!

A few weeks ago I developed a few broken blood vessel/ spider vein looking things on my chest. I had a cough at the time, so I thought I had just popped some blood vessels, no big deal. Over the past few weeks and particularly in the past few days, I have developed more of these on my chest and especially on my legs. I am a student in college and I went to the health center here, and they ran some bloodwork. Liver function and CBC were normal, but my sed rate was elevated at 65. I called my PCP and she told me to get into the rheumatologist (that appt. is in a little over a week). I have a lot of autonomic issues and am also currently being evaluated for mitochondrial disease (waiting 8 weeks for blood work, ugh). ...Anyway, has anyone had anything like this? Any idea what on earth this is? It is definitely accompanied by pain, particularly in my legs, and I told the doctor at the health center I was worried about some type of vasculitis or something, but she said she didn't think it presented like this? I am confuuuused.

Oh my god, I know what you mean. I want to smack people when they whine about having the sniffles, and my resting HR is in the 140's and am struggling to walk cause of nerve pain in my legs, and all the rest. And it gets really frustrating living on a college campus with all these healthy, young, energetic people all around me all the time (but when they get a cold, watch out...cause this is apparently the end of the world for most of them). A friend of mine left me a note yesterday that totally brightened my day: "No matter what happens, you remain talented, wonderful, beautiful, intelligent, and also awesome...I admire you so much, you have no idea. Despite all this **** you are still going strong. Well, kind of. You know what I mean." ...It made me laugh and it was really touching too, cause most people don't understand at all how tough it is to live with this stuff on a daily basis. It was really validating to know that someone sees what I am going through and appreciates how tough it is, and I was totally in a foul mood about my life and my health when I read that. It really makes such a difference when someone understands.

I have asthma and allergies, and about four weeks ago, I started wheezing pretty badly out of nowhere, it sounded like I had bronchitis or was developing pneumonia (which I get pretty often). I went to my doctor, and was put on a big burst of prednisone, and a quinolone called Levaquin. Strangely enough, the wheezing has lingered around for weeks, and is only just starting to get a bit better. My heart rate has been about 130 for the past week! The doctor seemed to think the Levaquin was the culprit at first, and when I stopped it, the palpitations/headaches/feeling like I was going to pass out got a bit better, but not entirely. My HR is now always at least at 100, and often goes up to 130 or higher. I am at college and this has been making getting to and keeping up with classes pretty difficult! I was just wondering, if Levaquin or any other quinolones are something that have triggered flare-ups of symptoms, particularly tachycardia, for anyone else?

I haven't been formally diagnosed with POTS, but I've been told I probably have some form of dysautonomia, and it seems POTS is a likely candidate (I am also going to be evaluated for mitochondrial disease next month). My mother has multiple sclerosis, but I have been thinking about it, and she seems to have possibly had some autonomic involvement over the years as well, having major issues with tachycardia and a period of time where she seems to have dealt with severe gastroparesis. My two brothers have never shown major signs of dysautonomia, though they both have had gastroparesis (theirs has come and gone, while my gastroparesis has largely been always present). They have both been diagnosed with Crohn's disease (like my father), so we always sort of equated their gastroparesis with that. We're just one big happy diseased family, I guess, lol. Good luck with your daughter...I have been dealing with symptoms since I was about 12, and I know it can be tough to be sick when you're a kid.