Kris4444

Sue I started a separate thread on this. So far he hasn't recommended anything to do for me other than to follow what Mayo is suggesting with taking clonidine.

I had gone to JH in August to be seen by a rheumatologist because I was diagnosed with scleroderma and I wasn't convinced that was correct. I saw a leading expert and he said I had some of the characteristics of sclero such as the Raynaud's and GI issues but that his feeling was that I had UCTD not sclero. While I was there he was very disturbed by my flushing episodes. They were really out of control that day and he said he lost track of how many times I flushed during our visit. He wanted this checked out and referred me to Mayo to have my autonomic nervous system tested. He recieved all the info from Mayo and when I told him that my rheumy here at home was pursuing mast cell and EDS this was his response, please tell me what you think: "I do not think that either mast cell defect or ED is the answer. I think you have a hypersensitive thermoregulatory system in the skin which is provoked by cold or hot. The problem is likely not a systemic disorder but a local defect in the vascular responses to usual signals. Let's see what your Rhuematologist comes up with but I suspect the underlying defect will be hard to define given the extensive work-up to date, beyond what I have said and the focus should should be on how to manage it." Thoughts? Should I stop looking for a name and just start dealing with the issues at hand? Should I not look into mast cells or EDS? I really feel the need to know what this is and what is causing it. Maybe I need to stop obsessing and just deal with it?

I got an email from the doctor I saw at Johns Hopkins. He said he doesn't believe I have mast cell or EDS rather that I have a hypersensitive thermoregulatory system in the skin that is provoked by hot or cold. He says he doesn't think it's systemic but a local defect in the ascular responses to usual signals....he said our focus shouldn't be on finding a name it should be on managing it.

Katie I'm sorry you still aren't feeling well. I need to PM you about what ended up happening with my daughter and her trainer You won't believe it! I am hoping that my rheumy will find a doctor who can answer some of these questions. He is currently looking for a geneticist to test for EDS. The other rheumy at Johns Hopkins is looking into a doctor for mast cell although he feels that will not be the case when it comes to me. I wish I could post the pictures so you can see what happens. Sue I have heard that things you eat can cause major problems while exercising. I don't know if that is the case with me or not. Once again, who do you ask? What kind of doctor would be the one who would look into this? An allergist? A hemotologist? I think it's strange that my doctors are at a complete loss as to who they can send me to. I guess this stuff is pretty rare. I just want a diagnosis. I don't know why it's so important to me but I want to be able to have a name to call this invisible illness that is robbing me of my life! I've been cleaning my daughter's room for 2 days, completely purging it. My everything hurts and I'm exhausted. I haven't gotten on the treadmill for the last two days and I feel defeated. I plan to do that first thing tomorrow so I have no excuses. Then I'll finish up her room before she gets home from her dad's house. Ugh.

That's great Issie! I just rejoined Weight Watchers. I'm hoping that by journaling everything I will start to lose. I was doing this on line as well on myfitnesspal.com. I really like the site I actually prefer it to the online Weight Watchers site as it is easier to navigate and understand. Even with tracking all of my food I wasn't able to lose much. I fought with the same 5 pounds or so. I need to lose about 50 pounds...it ***** lol. I tried doing the Atkins diet on the recommendation of my GI doctor. I lost about 7 pounds but that was it. I do think it helped the GI problems a bit so I'm toying with doing the Weight Watchers and really watching carbs, keeping them at a minimum but not eliminating them either as I know they do help with energy. Fingers crossed!

Thank you! Where is he loctaed?

Oh kitt they prescribed clonidine to "calm the sympathetic nervous system response." They said that my body is randomly shooting off adrenaline which is what is causing the flushing. The clonidine is supposed to help that. I saw my gp yesterday and he wants me to up the dose to 3x a day already. I just started taking it twice a day Tuesday...

Kelly, great article. Do you have contact info for that doctor?

Lyn, Strange that my doctors don't think it's likely that mast cells are involved. I am pushng it though and making sure I get tested. Thanks for the info! I do have an epi pen.

I saw my GP today and showed him some pictures of my face that I took yesterday after walking for 25 minutes. He was amazed at how swollen my face was, especially my nose and eyelids. He had asked me if I have ever taken an antihistimine for the flushing. I haven't for the flushing but I have for the cold urticaria. My problem is that the antihistimines cause my constipation to get worse so I can't take them daily, only on the days I know I'm going to be riding my horse in the cold. Does anyone else have swelling of their face when it flushes? This only seems to happen with exercise. The other flushing episodes from food or alcohol or chemical smells are flatter, not swollen looking. I wish I could post pictures on here for you to see what I mean. My profile picture has more of a flat flush because I had a glass of wine.

It's so frustrating! Funny you should mention Weight Watchers. I just joined again this week with a friend and weighed in yesterday. Biggest number of my LIFE! I am heavier now than I was after having my kids. Unreal. I am back to working out daily. Although I can't get too carried away I am up to 1.60 miles on the treadmill. Mostly walking with a little jogging (.10 of a mile). I'm so flushed when I'm done, it's crazy. I took pictures of my face and sent them to my doctors. I saw my GP today and he commented on how swollen my nose and eyes get. It's just bizzare. I really want to put this behind me and get my life back. I want to ride my horse and not feel like I'm going to pass out. I NEED to lose weight!! I'm praying WW works for me. I wonder which, if any, of my meds might cause weight gain...

Nothing like that came up in the report and my doctor hasn't mentioned anything like that since. That happened in August and I've never had an ordeal like that before in my life and not since (thank God) so I have no idea what caused that and can only hope that it won't happen again. I still don't know how you go from severe constipation to severe diarrhea in a heartbeat and then get diagnosed with and IBD for diarrhea? Just weird like everything else I am going through.

Yes I had the testing done at Mayo when they were testing my autonomic nervous system. I was very surprised when my ortho from Northwestern said he didn't think they could do that type of testing there. I saw my GP today and he said that you need certain type of equipment to do the test so it's very likely that many places don't have the lab set up for it.

I'm sorry for your son. I know what he goes through and its awful. Miralax works ok for me. I'm a big water drinker as you need to be when you are dealing with constipation. Great article! Makes me feel better about insisting my doctors look into mast cell as a possible cause of what I'm dealing with. Magnesium citrate does NOTHING for me other than make my insides gurgle and make me feel worse. I've tried it several times. My constipation was so bad that I had to do a weekly bowel prep (like you would do for a colonoscopy).

I have been diagnosed with severe colonic inertia which means really bad constipation. I was on every laxative known to man both prescription and over the counter and have had every test you can imagine to find out what the cause is. Finally a new GI doctor started me on Pristiq which is an SNRI but seems to help with the constipation as the gut creates it's own seratonin and other hormones. Who knew? Since starting this drug though I ended up with severe diarrhea and hospitalized for 6 days. They did a sigmoidoscopy with biopsies and found I had microscopic colitis which just makes NO SENSE considering I've been dealing with constipation for years! I haven't had another bout with the MC and I am still taking the Pristiq and Miralax. The Pristiq may be adding to my high NE levels. I have tried stopping the Pristiq but the constipation came back really bad and I had to use a bowel prep and enemas to get going again. Does anyone else have GI issues? I wonder how much the gut plays a role in this whole thing??

Before all of this started I was a professional horse trainer who was very fit. I also used to run 5 miles a day. I am having a hard time with exercise due to the flushing and dizziness and have put on a TON of weight. I don't even recognize myself. I have tried dieting with no success. I have been to a nutritionist have had testing done. I just CAN'T lose the weight. I gave up for a while and now I am back on track, going to Weight Watchers and getting on the treadmill daily. I don't know if I will lose or not and now I am 30 pounds heavier than I was when my body first started not allowing me to shed the weight so I need to lose about 50 pounds! UGH! Is anyone else going through this? Have you found things that have helped you get body back in shape? I feel like my body needs to be jump started or reprogrammed.

I think all of my stuff started with an EBV infection (titers 2,850). I still wonder if a lot of what I'm going through is caused by all the different medications that I've been on for the autoimmune stuff. Even now my medications don't make sense and I don't understand how taking and SNRI and taking clonidine even makes sense as you would think they would cancel each other out? Idk. Definately EBV started it all.

Nowwhat - I hear you! I thought earthquake too. Strange I wasn't frightened just though it odd. It is still happening to me but on a much smaller level now that I've started the clonidine. Not sure that is the answer but I haven't had it as bad since. To answer about checking NE levels. They insert an IV in your arm and ask you to lay down quietly for about 30 minutes. After 30 min they come in and take your blood while you are laying down. Then they have you walk around for 10-20 minutes and take your blood again standing or sitting upright. At my lab anything over 600 was considered high supine(laying down) and anything over 750 upright (sitting up or standing) was high. Mine were 656/1199. Hope this helps! I still can't get over how many people have this sensation. I wonder what other weird things we go through that we don't talk about that others may have too...

Kitt, This is great information. I will try this tomorrow and see what happens. I am already up and moving this morning. I will take my bp monitor with me to bed tonight so I can take my pressure before I get out of bed in the morning. It's frustrating trying to figure out what this is an how vague the Mayo info was. I asked my doctor at Johns Hopkins what he thought of the Mayo stuff and he said that they diagnosed me with a flushing disorder???? Huh? Where does it say that? Is that the hyperadrenergic state that they are talking about? Must be what he is referring to yet they never referred to it as a flushing disorder...I'm so confused. He said he would set up haing mast cell testing done but he doesn't believe this will be the problem...hmm Anyway, thanks for the info. It will be interesting to see what happens!

They prescribed clonidine at mayo. I don't know about a complete cardio up but I've seen a cardiologists. I've had an echo, several actually. I do have some regurgitating heart valves but nothing exciting to the doctor. I have worn a holter monitor at Mayo. The results were normal. I have a blood pressure monitor that also will register my heart rate. I'm not sure if that's what you're talking about. My blood pressure tends to fluctuate throughout the day. I take losartan for blood pressure as well as the clonidine now. Lately I've only been taking my blood pressure after I workout because that seems to be when I have the worst symptoms. So you suggest that I should take my blood pressure standing and continue to stand for 20 minutes and take it again? I am definitely up for trying something new and yes I am on a deadline. Thanks for the idea if you have others please let me know.

Kitt, This was the endocrinologist.

Batik, no buildings being worked on. I live in the suburbs. This usually happens in the middle of the night so even if work was going on it wouldn't be at that time. It takes a minute to realize that the vibration is coming from you. It's very strange.

Kit my NE is 1199 upright. Joann it is so frustrating. Who WANTS to have a tumor? This should show how desparate we are to feel better and get our lives back. As nice as my endo is I wish he could have been more helpul, given me a referral to an allergist or immunologist... I am still holding out hope for my rheumy. He is a good man. I see the GP on Friday to run it all past him and see what he suggests too. Can't hurt to get as many opinions as possible. I have 30 days and they are going by quickly. Sure hope to get feeling better soon. Now if everyone would realize that I'm staying home from work to "rest" means don't call me at 8:00 a.m. that would be GREAT!

Yes it was brought up at both Johns Hopkins and Mayo. The vascular doctor at Mayo ordered a histamine test and was told that they couldn't run it at that time...weird. Tryptase was normal. I definately feel there is mast cell involvement but again, don't know who to turn to. My rhuemy is looking into this for me. I guess I need an immunologist but need to find one who is familiar with pots. My rheumy is looking into EDS too since they all seem to go hand in hand. I have always been hypermobile as are my kids. Never gave it a second thought. We know I have a connective tissue disease, at first they said scleroderma, that has now been changed to UCTD. I was diagnosed with fibro at 19 after not recovering from a car accident. I have herniated discs in my cervical and lumbar spine and have had surgery on lumbar spine. DDD started really early, spinal stenosis, loss of lordosis in my cervical spine. The list goes on and on. Tons of inflammation in different organs, thyroid nodules, chronic bladder inflammation, non functioning colon...ugh

Honestly my head is spinning. All of this is so new to me. I don't know. Maybe I should wait until I see my GP before I up the dose. Too late for tonight since I already took it. I have an appointment with my GP on Friday.