Racer

Rachel, does your son get better or notice any difference when on antibiotics? Usually when I am on antibiotics my ocd and tics go away, and my anxiety greatly improves. Although my muscle control and speech greatly decrease, and my thinking slows. The same thing usually happens when I have had fevers. I am not saying that I think I have pandas or anything, just a observation

I keep reading threads on immune, autoimmune, etc. Googling, googling, then more googling, yet I just cant wrap my mind around it. Can someone point me to the basics? I spent the last couple days at the hospital. First I went in for a seizure, was released and ended up going back because I developed EXTREMELY painful urination. They got a urine sample and it ended up being positive for a UTI. Evidently a guy getting a UTI is "extremely rare". They gave me a prescription for ciprofloxacin. I was also supposed to start antibiotics for intestinal bacterial overgrowth, so hopefully the ciprofloxacin takes care of both. I feel so extremely sick, like the flu x10, no fever yet, so they shoved me out the door. So how many infections does it take before a person starts to question if something is wrong with the immune system?

Wow, interesting! I first learned about PANDAS many years ago in the autism community. A couple of the parents were getting help for there kids. PANDAS was something new, treatment was highly experimental, and help was only given to severe cases. It is nice to see that they have made much progress on research into it. It is nice to see they are including research of pandas in adults. I have had trouble with OCD and motor tics, but that is the case for many people with aspergers. I get much help from magnesium Good luck with your sons test results

Well, I had to discuss it all with my PCP, and she is strongly recommending against any more treatment, antibiotic or otherwise. She thinks I am going to fast and not giving things enough time to "see what happens". She was respectful, but I think she was sort of laughing at me at times. I think they might think I am hypochondriac or something. I dont know what the proper reaction to having a health issue is supposed to be... maybe I am over reacting, I don't know. I dont know what to do, I am in a bit of a mental breakdown over this all. I want to crawl into a hole and never come out again. I am to afraid to see a therapist or someone, I am really fearful they would have me involuntarily committed or something.

Thanks!

If you are referring to the "w:255 l:128" at the bottom in white text, it is the image size, 255x128 mm(?) at .89x magnification. In most dicom programs you can turn that image info overlay on/off. It is part of the image metadata. The tech/dr who interpreted the test results should have noted in the report what that measurement was.

My GI doctor thinks I have "small bowel bacterial overgrowth". Seems like such a simple problem to treat, a week or two of antibiotics to eradicate the bacteria? He said it was up to me, I could wait to get a breath test to confirm it, or just start treatment right away. I have had problems with nausea/vomiting, malnourishment, weight loss, keeping hydrated, especially since June/July and will need nutritional support. One thing that scares me, If the bowel fails to absorb enough nutrition with a tube, then I would need tpn? I opted to wait for the test, I am not sure if this is the correct decision or not. What is it like having a NJ tube? The feed would be very slow???

Just want to point out that the "w:255 l:128" is usually the whole image size, not sure if that is the size of the markers

I highlighted a part that I want to point out. The part of my reply about "labels" is a variation of a common saying that circulates around autism/aspergers communities. There is often talk about being labeled, and how those labels don't define a person. What skills you have, used to have, or want to achieve does not define you. Hobbies, occupation, wealth, social status, disability... these do not define people. What defines you is your core values, your core qualities... It is who you are as a person. For instance, I am sure you are a loving mother, and this might be one of a long list of things that define you. Being sick is a label, and labels don't define you I am just remembering, one thing I have seen suggested before, is to make up a list of qualities that define you. You could start out small and add things over time. You could pin the list to the wall, or keep in a safe private place. When you are feeling down, you get out that list to remind you who you are Now if I could only follow my own advice

I get the exact opposite... "you need to start eating", "you are way to skinny", "why dont you eat?", "you need to start lifting weights", "you have lost to much weight", "are you on drugs", "what medications are they giving you", etc... I know I am sickly looking. I understand I am 30 pounds underweight. I understand I look like I am daze and confused. I dont know why people think they need to tell me? Then to make things worse, they always want to give me there opinion on what I need to do to cure myself... "you need to stop taking all that medication", "stop seeing so many doctors", "start eating better"... When I look in the mirror, I have a hard time seeing a "sick" person. I have had disabilities my whole life, so I have never known anything other. I never looked into the mirror and thought I looked disabled. It is just something natural when you have lived your whole life with it, it dosnt define you in that way. Having a "illness" is different, even after a couple years it is still new to me, it is hard to accept. I understand I might look sick to people, but I cant look into a mirror and see a "sick" person anymore then I can see a "disabled" person. Labels are something placed on cans and jars stuffed away in your cabinets. They might describe your struggles, but they don't define you as a person Anyway, just saying, people will be ignorant regardless, so if they say you look good, mise well take it as a compliment when you can

I don't think they look disgusting at all. You want to see disgusting, many of my scans show me packed full of poop! I just dont see anything disgusting in you

Thanks

When I started experiencing my first ever faints, not having any health insurance, I didn't have any choice but to go to the local ER for help. Looking back on this with what I know now, it was a pure miracle that I happened to get the greatest ER doctor ever. At the time I didn't have a clue what dysautonomia was, or why I was fainting, and was in the ER scared out of my mind. This doctor was constantly in the room, constantly talking to me, calming me... everything you would hope and expect a doctor to do. I didn't have insurance, so she could have just run a couple tests and sent me home, but instead she kept me there as long as she could, ran a full cardiac workup, and didn't charge me for her services. On top of that, she called around to find me a cardiologist and PCP who would see me free of charge, and she even set me up appointments with them. The cardiologist (EP) she sent me to is the dr who diagnosed me, and who I continue to see. He seen me and ran tests free of charge for a few visits until I got health insurance. The many times I have been back to the ER, I have never seen that ER dr again (I look!), but I wonder how different things would be if I hadn't had that dr point me in the right direction.

I always see people with pots saying to avoid heat, that heat makes things worse. For me, I can't handle the cold whatsoever, I am most comfortable around 80 degrees. I experience uncontrollable shivering and go numb when I get cold. I bust out thermal wear when the temp goes below 70. Around here, most are still in t-shirts and shorts at that temp, and I am layering

I see a electrophysiologist who diagnosed me with dysautonomia. I also occasionally see a cardiologist in the same practice. The EP seems to know all about the cardiac side of dysautonomia, while the cardiologist seems to only know what he learned threw osmosis. I have a hard time trusting anyone other then my EP with my cardiac care! I also see a neurologist, who knows just enough about dysautonomia to be dangerous. He is all to happy to try to over medicate me for seizures and migraines, but other then meds, he is not very helpful. I also see a gastroenterologist and his numerous physician assistants. The GI dr's are just inadequate for me, so I am hoping I can get a appointment with the nearest motility center. My primary care dr knows nothing about dysautonomia, is old as dirt and goes with the "just tough it out" philosophy. He does absolutely nothing to help me and is useless to me. Oddly enough his PA was the kindest, most compassionate person, and more helpful then the dr. I am also on the hunt for a urologist. I have way to many long standing issues that need attending to, just not many specialists in my area.

They make tons of different brands, kinds, of compression garments for guys. Try searching for "mens compression tights" or "mens recovery tights". They are made for athletes, in mens athletic styles. They are not grandmas pantyhose. You are unlikely to find them in 30-40 though, more in the 20-30 range (very few want 30-40!). Although any tight you get is going to be graduated compression, so you could try 20-30 shorts along with 30-40 socks to get a similar effect. Medical supply companies do sell "hose" for guys, basically the same pantyhose made for ladies, just repackaged. Save your manhood and get the athletic tights, unless of course you really do want to walk around in pantyhose (sorry lejones! nothing wrong with that)

Thanks Is it a benign hemangioma? How big? The reason I ask (as you probably already know), a hemangioma that gets to big can cause autonomic problems along with a ton of other problems. These things can get very dangerous, that is usually why they keep a eye on growth. Did a GI dr diagnose it? Doctors are not sure of the type of tumor I have. Not knowing is hard, not sure I want to wait 6 months to find out what to do. Probably not a hemangioma, and it seems to be causing at least some problems for me. From what I read, when they are not sure of the type, they usually remove it. From what I understand, liver surgery is a fairly major surgery. If you just recently had your first scan, maybe you could request a scan in a month to make sure it isn't rapid growing? It might give some peace of mind (if you need it) to wait that first 6 months

I get those anxiety like feelings, like has been explained. They tend to happen for no apparent reason. While my anxiety usually has triggers, or is situational, like social situations, being in large crowds, etc. Although sometimes I just skip the anxiety and go into a full blown panic attack. I have some ptsd, so in my case I know it is anxiety

No qsart or biopsy, my cardiologist is the one who diagnosed me, based on my positive TTT along with my other tests.

Thanks, no on the oncologist, I cant get a doctor to give me a referral to one. I have had at least three different GI doctors look at the tumor images, but non of them seemed sure. The doctor who wrote up the report on the scans suggested I have another ct scan to get a better view, but my doctor wants to just wait 6 months to see if it grows. I cant seem to get any communication between doctors, and they are only willing to consider problems that directly relate to the specialty. Everything comes down to referrals, I cant seem to get the referrals. I dont know how to go about contacting another hospital and asking for help or if this is a proper thing to do in my situation. I dont know, maybe I am bad at advocating, I have trouble communicating sometimes, I dont know how to improve this. I learned how to communicate and be social threw instruction and trial/error, so I obviously have some gaps in these sort of skills.

I am so extremely frustrated, my current doctors have run all the standard tests, and they dont know what else to do. I dont appear to be "that sick" so I am just being tossed in the wait and see bin. You know, the "wait 6 months and see how you feel". I have been in critical situations twice now, seriously, how many times do I have to almost die before I am taken serious!?! I cant figure out how to get into a larger hospital for care? I am on a liquid diet because of nausea/vomiting, abdominal pain, and severe constipation. I have tried many medications, and have lost almost 30 pounds the past two months. Those problems lead to me being dehydrated, and that just drops my blood pressure. So far I have had... Upper scope: normal, colonoscopy: normal, gastric empty: normal, abdominal ultrasound and abdominal ct: liver tumor (unknown type), liver function: sufficient, abdominal xray x2: constipation. I am just supposed to wait and see? Ugh It is worse yet with the neurologist, I had two seizures, documented while in the hospital, and a sudden onset of numerous neuro problems, lose of reflexes, nystagmus, neurogenic bladder, and I cant get any explanation from him. Tests, head ct, head mri, 24hr eeg, all normal. His conclusion is that everything is normal, and to keep taking seizure meds to prevent it from happening again. So frustrated, had the colonoscopy this morning, only to be told to "take fiber". Seriously? I wanted to ask them if anyone around actually takes notes, but all I could do is sit and smile because I was still feeling the propofol

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sorry, didnt mean to make anyone think I am in bad pain, it is manageable pain most of the time, just have to avoid aggravating things. I guess one of my points was supposed to be that, most of the time pain is a good indicator that something might be wrong. If your back hurts all the time, regardless of the cause, you should get those sort of things checked out!

So what your saying is that you are stretchy and possibly have hypermobile joints? EDS seems like a very complex diagnoses, with the different types and such a wide range of symptoms. How about skin involvement? arthritis? nerve pain? fragile blood vessels? I probably meet the criteria for EDS or a related disorder. I used to be able to do stuff like the reverse prayer pose, but now in my late 20's, pain and stiffness has really started to set in. Anymore, attempting to do those sort of "tricks", or accidentally contorting in the wrong direction is extremely painful, like makes me want to cry sort of painful. Nerve and joint pain is bad enough just doing everyday stuff. I tend to figure that my problem is a bit more then what the average normal stretchy person experiences, and probably caused by something like EDS. Of course I have numerous other issues that makes me think EDS. I dont think they diagnose on hypermobility alone? I know very little about EDS, so maybe a person with EDS can give you more advice on the "red flags" to look for. To me, the few symptoms you listed seem like they could be caused by a large number of things.

Probably normal for many when feeling sad. Does it happen when something is triggering you to feel sad, or does it just happen for no reason? Maybe because you rarely ever feel sad, when you do it hits a little stronger physically (bottled up emotions)?