Kris4444

I went to the one in Minnesota

My GI issues have gotten increasingly worse since starting clonidine. I am having severe left sided (colon) pain for the last few days. I have been taking Miralax 3 times day with no relief. I've tried Librax for the colon pain and 800 mgs of prescription Motrin several times a day and it isn't letting up. Part of me wants to go to the ER but I have done that many times before and they don't do much other than take an x-ray, declare that I'm terribly constipated, offer me drugs that will make the constipation worse but help with the pain and send me home. Does anyone else have these types of issues? Is there anything you do that eases the pain when it gets like this? The heating pad just isn't cuting it and I don't want to break down and take a tramadol but it might come down to that. Sorry for being a whiner but I just needed to vent.

jrlehnardt - you have been through a lot. I am wasting my time seeing a local immunologist? Should I be seeing someone like Dr. Afrin? My husband and I have been all over, Johns Hopkins in August and now Mayo in January. I am off work and we are struggling financially. More travel seems nuts if there is someone here who can possibly diagnose. I know nothing about this doctor I'm seeing Thursday, only that she is thorough and knows something about mast cell at least. We have a lot in common with our symptoms. I don't have an official pots diagnosis or EDS but after going to Mayo I am convinced that I have hyper pots and most likely mast cell which would account for all the GI issues and inflammation in my bladder and other organs. I've been doing a ton of my own research and I pray I'm not wrong. My diagnosis of UCTD and Fibromyalgia can definately be mistaken and I could have EDS. I am extremely hypermobile, always have been. I have blown out tendons in my arms, feet, elbows...I appreciate your reply. Thank you! I'm still having the strange vibrations in my sleep but they don't freak me out anymore now that I know it seems to be common with people who are hyper pots with high levels of NE. wishing&hoping - thanks for the info. Definately worth looking into other doctors who might be willing to work with my local ones. My rheumatologist was supposed to be looking into this for me but I'm doing the leg work on my own. I will definately use your resource if this doctor I see on Thursday proves not to be helpful. Thanks again!

Elizabeth isn't it amazing how much we learn from having to do our own research? Issie I am seeing an immunologist on Thursday.

Lel - I do have major issues with full body temperature regulation. It's really bad. The worst part is when I get cold and then my body re-warms. I can't seem to get to a normal temp when this happens. My body goes into overdrive and I flush EVERYWHERE, my skin becomes very hot and red, almost purple and then I can't stay awake. It's very scary. So far no one has been able to tell me why. I have had ANS testing and everything (other than the high NE levels) was normal. As far as the "body earthquakes" (I love this expression as it really does describe how it feels) I have never had it where I couldn't move my arms. It doesn't happen every night but I do take 2 flexeril for sleep, that on top of the clonidine makes me very sleepy so I may be sleeping through these episodes. I know that when they do wake me I do have a feeling of fear, almost like a baby with a startle response, my arms tend to shake and I notice it mostly in my upper body. I have been lucid enough recently to put my hand on my chest and I notice that my heart is pounding pretty hard when this happens. It sounds as though our issues are very similar. It is discouraging that neither one of us seem to have any answers other than "take this and call me in the morning". I am hoping to get some answers from the immunologist. I want her to look into mast cell and it has been suggested that I have her investigate further into the Epstein-Barr Virus that started this whole thing. Please keep in touch and let me know about any updates with your condition. I will do the same. Elizabeth - I have read about the pheo and clonidine. So far all I have noticed is a significant improvement in my bp after exercise. The flushing is still as intense. I am trying to figure out a way to post pictures on here so you can see what I'm talking about. I have a photo bucket account and I think that might work. Anyway, I flush in two separate ways. The flushing I have with exercise is raised and welted where the flushing from food or alcohol is not raised, it's flat and very red and hot. Even with my high NE levels my endo did not want to do a scan for pheo saying that Mayo wasn't impressed enough with the numbers to do it so he doesn't feel it is necessary. He did say "I'm not saying you don't have a tumor, it's possible that you do, but the diagnositcs aren't pointing to it at this time." Gee, I feel MUCH better! He said that I don't present like a person with pheo. (I'm guessing that means because I am overweight and constipated rather than skinny with diarrhea) I'm really hoping this immunologist has some answers but I'm starting to think this is a dead end road and the only answers I will get is to take another pill. If that is the case and I can get my life back then fine, but I still have a NEED to know what the CAUSE is. I want a name, something to call it. I know that isn't always possible but it helps me mentally to know that it has a name and i can explain it to people who always tell me I don't look sick.

I'm not sure what other tests she might run. She is a local doctor but does treat mast cell disorders so that is something anyway. My doctor said to make the appointment with her and we will go with whatever she finds. Her appointments are 2 hours long so she is very thorough. She wants me to bring all of my records, LOL, I doubt she means ALL of my records but I'll bring the ones from Mayo and JH for sure. Thanks for the advice. I will definately see if she will look into some of the more rare blood work like you mentioned. Sure hope we find SOMETHING, tired of dead ends.

Hi, It was recommended that I see an immunologist regarding the flushing episodes that I have. I want to know if there is mast cell involvement. This doctor can send me to a colleague for mast cell testing if she feels it is necessary but she wants to run an allergy panel first. Are there any specific questions I should bring to her attention regarding my hyper-pots type symptoms and or MCAD/MCAS? Is there a way to post pictures on here? I'd love to share some pictures of the flushing that I have after exercise. It is totally different than my profile picture.

At Mayo they diagnosed me with a left eustachian tube dysfunction....hmm

I am going to see an immunologist next week, I'm hoping this might answer some questions. There is a big part of me that wants to get off of just about everything including the SNRI which makes my colon work better. I just want to see if any of the symptoms go away when off the meds. At this point I can't even keep track of when symptoms started because I have been on so many medications over the past few years.

The doctor I saw reassured me that wasnt the case. I specifically asked him if it was possible that I was causing this state.

Looneymom I had the same experience. Kind of feel abandoned.

I have this too but not to the extreme you are describing. My heat intolerance started this past summer. I have cold intolerance as well as cold urticaria (I break out in hives after cold exposure). I have a major flushing disorder that gets worse with exercise or heat. I am extremely stubborn and refuse to give up the sport I love so this is a major life issue for me. I have been to Mayo for ANS testing and they put me on clonidine but I'm not getting great results. I am setting up an appointment with an immunologist soon. I am thinking possibly mast cell or if not then some type of allergy to exercise. I refuse to let go of this part of my life. I have been riding horses forever and it truly defines who I am. It was my career and I've already let that go. I won't let this take what is left. Maybe look into an immunologist to see how or if they might treat you. My endo did nothing for me even with my high NE levels. I do have 7 small nodules on my thyroid and take synthroid but it doesnt help with the intolerances. Good luck!

I have the opposite problem. I have severe colonic inertia which means that I have nearly no parastalisis or contraction of the colon to move things along. Strangely, I also was diagnosed with microscopoic colitis and went through a bout of contant diarrhea that had me in the bathroom up to 12 times a day and eventually hospitalized for 6 days. That hasn't happened again (Thank God) so I'm confused as I can go from one extreme to another but i definately feel that my GI issues may be the cause of this whole mess for me. I was diagnosed with IBS as a child and they still have that as my diagnosis now, even with the microscopic colitis and colonic inertia. It really depends on which doctor you talk to. I have gone through about 6 GI doctors until I found one who took a different approach to my constipation. I'm not sure that this treatment will be the final one that I stick with since I have a suspicion that my high NE levels are caused by the medication that the GI doc is treating me with.

Hi, I was just at Mayo in Rochester in January for autonomic nervous system testing. I was amazed by how many doctors I saw and how many tests were run in the 4 days that I was there. I agree that the TTT test was only a 10 minute test but I didn't know it was supposed to be any different. The only doctor that I didn't care for there was the gastroenterologist who just seemed completely uninterested in me and quite frankly I felt it was a waste of time. I was diagnosed with a hyperadrenergic state which my GP says is the same thing as hyper pots. They are treating me with clonidine at the moment and we are looking into mast cell disorders as well as EDS as a possible underlying issue since I have autoimmune issues. You must go to Newt's for a burger!! It was recommended by a friend who had gone to Mayo and I'm so glad that we went. On our last day we walked through the underground walk way (we had used it only back and forth from the hotel to the hospital and didn't realize how much great stuff was there!) and we were so surprised by all the great shops and restaurants in there! Good luck and I hope they help you find a great treatment plan!

Wow. We have so much in common it's crazy. I was diagnosed with scleroderma initially because of my Raynaud's and GI issues. I decided to see a specialist and flew out to Johns Hopkins where I was told that I don't have sclero, I have undifferentiated connective tissue disease but more than that, the doctor felt I had a severe flushing disorder and sent a request to Mayo in Rochester, MN to have my autonomic nervous system tested. I DO have high NE and NME levels. They tested them at Mayo 656 supine 1199 upright. I am also on an SNRI (for my GI problems) so I don't know if the SNRI is causing the high levels or if my body is. I too have been put on clonidine for the flushing. I don't see any improvement and I am taking it 3 times a day now at a dosage of .1. The GP called today and said that I should start upping it to the max of .2 3x's a day immediately since I'm seeing no relief. After reading your post about trying to come off this drug it is making me think even more about taking a "medicine vacation" and just getting off of everything again to see what the natural state of my body is. The problem is that if I stop the SNRI then my colon will shut down again...it's the only thing that has given me relief. How do you know that you don't have a mast cell disorder? That is the avenue I am exploring now. Have you been tested? I feel your frustration having doctors who don't have a clue. As helpful as it was to go to Mayo, they throw you back at doctors who aren't familiar with diseases that are this rare and so I too am floundering, trying to figure out what to do. I will share my journey with you as I hope you will share yours. Maybe together we can get some answers!

Spinner - thanks for the info. It's amazing to me how few and far between these doctors are! Peace - thanks for the well wishes. Taking the clonidine three times a day now. I feel really tired. Still having major flushing issues with exercise. Kitt - I did what you suggested and I did have an increase upon standing of 31. I took my medicine and repeated the test later with adj increase of only 16. So at least the meds are working.

I have the same question. I went to Mayo for ANS testing. Everything was normal with the exception of high NE and NM. Mine was 656/1199. The discharge summary for billing purposes says POTS but when I asked if I had POTS they said no. I did not ask about Hyper Pots though but the neuro says I have a "hyperadrenergic state" whether or not that is Hyper Pots I still don't know. I have major flushing issues, dizziness, hot/cold intolerance, exercise intolerance...the list goes on and on. Is it Pots? I still don't know. I totally understand your frustration. Sometimes it just does the mind good to KNOW what to call this.

Tachy there was a post earlier and then it was gone and then the current post appeared. I am going to wait to hear from the GP today and also bug the rheumatologist again to see where he has gotten with things. Actually at Mayo the vascular doctor wanted to run tests for histamine but the lab told him they couldn't do the test for some reason.

I'm sorry to hear you have been through so much Spinner. It's not fun. The greatest thing about going to Mayo was having them tell me it's not all in my head, they KNOW something is going on, they just don't know what is causing it. Story of my life! Thanks for praying for me (I don't think anyone is going to get upset over that and I need all I can get lol) I'll do the same for you!

Hi Tachy, Thanks for the posts. There is a lot of good information here that I intend to look into. The biggest problem for me at this point is finding the right doctor to look into the urticaria. I saw an allergist who diagnosed the cold urticaria. I was not impressed with him. My rheumatologist is looking into a geneticist for the EDS, maybe I can ask him to find an allergist or should it be a hemotologist? When I saw the GP on Friday I showed him a picture of me from the day before after exercise. He pointed out how swollen my face was, especially around my nose and eyelids. He asked if I had ever taken antihistamines for the flushing. I have not. We had tried keeping me on a daily dose of zyrtech but the constipation got really bad. I started using it only when I was going out the door to ride my horse in the cold and it has worked for the hives that I would usually get the day after. Thanks again for all the advice. I will read up on the links. Looking forward to hearing from the GP tomorrow and hearing his thoughts and ideas.

I was diagnosed with fibro at 19. I'm 41 now. So I've been dealing with health issues my entire life. I was diagnosed with migraines at 13 as well as IBS. I had mono in high school and also was anorexic which I think really screwed up my system. In 2008 I got a really bad EBV infection and that was when the autoimmune/rheumatological issues got really bad, joint pain, blowing out tendons in my forearms and feet. Then the Raynaud's started and the cold urticaria/heat intolerance, exercise intolerance and inflammation in various organs as well as nodules on my thyroid. Seems like everytime I turn around it's something else. We went to Mayo to find THE problem and only ended up finding ANOTHER problem and getting a new drug to try. Not exactly what we were hoping for. I'm frustrated already but hopeful that the Mayo doctors at least opened some doors with the "hyperadrenergic state" diagnosis that the doctors that I see regularly can look into like EDS and mast cell. If that isn't the problem then I don't know what to do.

I think that I have no choice. I really want to know what is causing this. Another thing I didn't mention...I had tested postive for cryofibrinogen when at Johns Hopkins. They tested me again at Mayo but said it was negative. I'm not sure they did the test correctly though because they have to wait 7 days and the results were in by day 2...when I questioned this they had the vascular guy call me and reassure me that I do not test positive and that it was probably a false positive at JH. Seeing as I have been diagnosed with cold urticaria and have Raynaud's it only makes sense that I MIGHT be positive. Right now I am questioning everything and probably making myself and everyone else nuts. I have had this going on since 2008. I have 30 days to figure this out. I'm going to have to push to make this happen and I don't want to anger the doctors who have been helpful thus far. UGH! So frustrating!

I'll have to look into it. I am walking/jogging on the treadmill and I'm doing well although it's not the way I used to work out, I could go much further and much faster before all of this...oh well. I'm making progress!

Joann I am noticing a difference for the better. i have been working out every day and I have been keeping track of my bp and hr. Every day since starting the clonidine twice a day, my bp and hr have come down after exercise. Today I didn't get as flushed and had no dizziness afterward like I usually do It IS helping me. I am stating it three times a day tomorrow on the advice of my GP that I saw on Friday. He said the worst thing that may happen is I find myself on the floor and since I'm home from work I guess that would be ok as long as it's not when I'm working out on the treadmill! Let me know if you try it and how it works for you! Wishing you the best!

Lyn - what I quoted was the entire email. I don't know what he knows about mast cell or Eds. He is a Scleroderma expert. I have not responded to him yet but want to know why too. Just not sure what to say yet. It was warm in the room. My hands were puffy and mottled.