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Everything posted by Kris4444

  1. Hmmm. I'm taking 1 mg of clonidine too. I take it in the morning. Yes my NE levels are1199. I flush like crazy but no one has looked into mcas yet but we are working on it. I know this has happened before the clonidine but it was different, more of a buzzing feeling. This is exactly like you said, like the bed was shaking or an earthquake... I take an SNRI. I wonder how many of my symptoms might be from that.
  2. Does this happen to anyone else? If so, what causes it? At first I thought one of my dogs was scratching itself on the bed but once awake I realized that it was me and it was internal, the vibration was on the inside of me. It only happens in my sleep. Just weird.
  3. I agree that this site is a great place for us to share what is going on. There aren't many people who want to hear your issues over and over again. I feel bad for my husband that this has gone on for so long. Joann your comment reminds me of what my friend (who happens to be your namesake) has said to me in the past. She said that men aren't wired to listen to us vent because they want to fix things. She told me to call her when I just want to complain or be a female dog. She gave me a doll that is handmade that you take by the legs and smash into whatever you'd like in order to feel better lol! She is on my bedside table at all times. Katy I have also read those books as well as the one that came after which was also very enlightening and we have passed it on to friends and other couples. I get it for the most part but it's still disappointing that my rock has seemed to disappear. I don't have many friends left. This illness has taken so much from me and now I feel like I'm losing him too or at least his understanding.
  4. Thanks for the replies. I am seeing a therapist and she likes to point out how different men and women are. Men need to fix things. So if I'm broken, he needs to find a way to make me better and he can't. I get that and I do feel for him. We went through a time early on in our relationship where he had a serious medical condition. Part of me wanted to run but the bigger part of me, the part that my parents instilled in me, said to help him and so I did and I have never regretted it. Fortunately for him his illness was cured by a surgery where mine seems to continue to perplex even the best of the best doctors. How can I possibly expect him to get it? I can't but I guess I hoped for a little more support. Like you said, it's "today", today he isn't being open to suggestion, today he doesn't want to deal with it. Tomorrow is another day and hopefully a more positive one for both of us. I am sure he is scared, I know I am. Guys don't like to admit to that so instead they act like jerks and that is who I am dealing with today. But it's just today, tomorrow is another day. I guess I just need to stay positive and try and leave the diagnosing to the doctors.
  5. Anyone one else? I know this has been going on for years and I know that the constant doctor's appointments and diagnostics and the neverending road to no where is getting old....BUT...we are finally seeing light at the end of the tunnel. We have a new path to follow and NOW he is going to shut down on me??? I asked him to watch a couple videos regarding MCAS. I fit the diagnosis so well! I showed him the biopsy report from my colon and how it may relate to a mast cell disorder. He played with his phone and then said everything they said made no sense to him. I have lost so many friends over this not to mention my LIFE and everything that I enjoy. I have 30 days to figure this out. I would think that he would be onboard with this but clearly he has had enough. I have a doctor's appointment Monday. I want to have info to talk to him about so that we can get some questions answered that we discovered at Mayo. I wanted his opinion, he has been through it all but he has lost interest, he is done with this whole thing. Has this happened to you? Am I obsessing and need to just quit? I feel like I am finally getting somewhere and I need his support but instead I feel like I have done nothing but disappoint him and that even though he agreed with taking a medical leave I think he is upset about it. Sorry to vent. I just feel really alone right now.
  6. I'm wondering though if my levels and symptoms could be caused by the meds and how long does it take for the meds to not show up in blood work.
  7. I take pristiq for of all things my non-functioning colon. It has helped when nothing else has. When I was at Mayo they had me discontinue pristiq for a few days so that they could do the supine/upright blood test. My NE levels were 656 supine and 1199 upright (sitting not standing). They wanted to check my catecholomines because of the high reading and said that if that one was high as well that they would probably do an MIBG scan to look for a pheo or other endocrine type tumors. My normetenphrine levels were abnormally elevated but they decided that the scan was not necessary for some reason. I am seeing my endo on Monday. He will be seeing the Mayo results and discussing them with me. Part of me really wants to demand an MIBG scan but the other part of me wonders how much of my symptoms may be caused by the pristiq. What if I wean off of it and repeat the NE test? What else should I talk to the endo about? Would he be the one to ask about MCAS?
  8. I got the letter from my doctor today and gave it to my boss. He was much more understanding than I thought he would be although he would not assure me that my job would be there waiting for me when I got back. Oh well. Gotta let that roll off of me. Monday starts my 30 days. I have an appt with the endo. I'm hoping he will give me some insight to my high NE levels and maybe test v for pheo. How wrong is it that I want to have a tumor?
  9. Thank you all for the support and kind words. There won't be much in the way of financial assistance in this month off. Most of my co-workers won't worry about me or miss me. My boss and I merged with this company a little over a year ago. They are a tight knit group who have worked together for 20 years. My boss had a stroke at the beginning of last tax season which put us all in a tailspin but the owner of the company did not care about my boss or his clients and made no attempt to help in anyway. I will be replaced and forgotten. When I got back from Mayo I got a letter from the office manager telling me how put out she was by my not being there and how much extra work fell on her. She also said that with my medical condition being what it is I might want v to consider if I want to put myself through a "brutal tax season ". I was blown away by not only the lack of caring but the lack of HR knowledge this company has. Only my boss will miss me and he will have to get over it. I need this. I am thankful for my doctors, family and friends. Their support and the support of this group is all I need. Thanks again.
  10. I met with my rheumatologist on Friday. I explained to him how horrible my memory has become. At work I am making mistakes and things I have worked on look unfamiliar to me. I am forgetting conversations that I've had both at work and at home. My work requires being extremely accurate and I pride myself on being detail oriented. At least I did... My pain and headaches are getting worse. My weekends are spent sleeping in between loads of laundry and trying to save up enough energy to get through another work week. My house is a wreck. I have no energy for my kids or my husband. I'm not doing well and I've been here before. I need a break. My therapist told me that it was time to consider a 30 day medical leave. I brought this up with my rheumy and he agreed. This is the busiest season at work (I work for a CPA) and my co-workers are counting on me. My boss suffered a stroke last year and I am his right arm. I can't bear the thought of leaving him there to fend for himself when I know there is no one else who will take care of him. I worry about our finances. I don't think we can do this on one income. We have 4 children (2nd marriage for both of us, I have 2 and he has 2) and a ton of bills. I'm scared to take the step. When I left my doctors office on Friday he said to think about it and let him know. After being at work for 5 minutes I was rudely awakened to how badly whatever this disease is, is behaving right now. I told my rheumy to send the letter and now I am beside myself with worry and guilt. At first my husband didn't want me to do this, he said he was worried about me being alone. We had a long talk and I think he gets it now, he even said it's ok to call the doctor and have him send the letter. Still, I feel like a failure. I need to get better and I can't do it when I'm this fatigued. I am supposed to be exercising every day but I just don't have it in me. If I take the time off work I can catch up on my sleep, start exercising and eating better, maybe even (with the help of my doctor) take a medication vacation and see what I can possibly get off of that might be contributing to my symptoms (like my norepinephrine level of 1199 upright). I don't know how we will do it but I don't see another option for me right now. I need a break. Thoughts? Ideas? Thanks, Kris
  11. I guess I just figured Mayo would have figured this all out. It's disappointing that I have to continue hunting. You are right though about my doctor. Im lucky to have him.
  12. Wildcat he does treat my fibromyalgia as well as my spondyloarthritis, DDD, Raynaud's and UCTD. Katy I became a member of that group on Inspire the other day. If you look me up under the same name you will see a pic of me and Soulie. I am on inspire a lot for my GI issues.
  13. I'm sorry your visit was so terrible. We both had rheumy visits today with similar yet different outcomes. Similar being that neither doctor knew too much about EDS or MCAS. The difference is my doctor has been treating me for years and has watched my symptoms progress and has never given up on me. It is so important to find a doctor who truly cares. They are out there. Hang in there. I hope you find a doctor that will give you the answers you seek. Kris
  14. Hi, I saw my doctor and we went over all the Mayo stuff. He doesn't know much about hyper pots. I told him that many people with hypet pots have EDS. I showed him my double jointed elbows, pulled my thumbs down to my forearms told him I can stand on my ankles, touch the floor with my palms without bending my knees....he was intrigued. I was diagnosed with fibromyalgia at 19 after a car accident wouldn't it be something if it's been EDS all along? I also told him about MCAS. He is going to look into that as well. Now the down side...he doesn't seem to know much about either EDS or MCAS.Is that normal? He said that he doesn't even know if their lab is set up to test for them. I find that hard to believe because he is located at Northwestern in Chicago and they have a state of the art facility. I guess he doesn't see this too often. I want to thank everyone for all the info I was able to talk to my doctor about today. I still have hope that there is an answer for me thanks to all of you. Kris
  15. Hi Kit, I'm sorry, maybe I wasn't clear. I didn't fail the TTT. They said it was normal. They did have me wear a holter and that was normal. The only abnormal findings were the high NE and normetanephrine and my flushing which was very obvious. I called Mayo today and asked about the diagnosis on my summary. They transferred me to neuro and at first the girl said that if it's on the summary then that is the diagnosis. She put me on hold and came back and said that sometimes they use what is closest for coding for insurance like I thought. I do have trouble sleeping sometimes and always wake up tired. I see my favorite doctor on Friday. Fingers crossed that he will have a plan, maybe even test for mast cell stuff. I rode my horse tonight for the first time in about 6 weeks. Only had some dizziness when I got down and a headache so maybe the clonidine is helping. They took me off of spironolactone. Maybe that is why I'm feeling better? Thanks for reaching out. I appreciate everyone's comments and helpful insight. Kris
  16. Katybug, I haven't ridden in over a month. I have cold urticaria and will wake up covered in hives the day after I ride if I got cold. This summer was the first time that I was intolerant to the heat. I couldn't ride for long and when I would get down I would be bright, bright red, sweaty and have vertigo. I have had several people tell me that I needed to get down just because of how red I get. I used to ride multiple horses a day and teach lessons in the heat and cold. I have Raynaud's too which complicates things. I no longer recognize this life or myself. i really thought Mayo would figure this out. At first I was happy that at least we had a name for this and that I wasn't crazy. Now I've realized that all I got was another name for something that they can only treat the symptoms of. Very depressing. I am fairly certain that I've had the work up for lyme early on. I'm sorry you don't get to ride anymore. I don't know what I will do if it gets to that point. What kind of horse do you have and what discipline did you ride? Alex, thank you for the welcome! it's nice that so many people have reached out. I really feel welcome! Kris
  17. Hi Corina. Thanks for the welcome. Chaos - This is a lot of great info. I will take a look at it at home and respond back then. Thank you! Oh and we have sent my labs to an infectious disease doc and he said he didn't see any reason to do additional testing... -K
  18. Yes they only did a 10 min ttt for me as well. They didn't test for histamine although they wanted to but I was told something was going on at the lab where they couldn't run those tests...weird. I have not seen an immuonologist. Maybe I need to do that or maybe I need to just get off all this stupid medication and see if my body corrects itself. I just want my life back. I miss being active and physically fit. I'm tired of being tired.
  19. Chaos, Welcome to my confusion! I am guessing that the diagnosis on the summary is for the coding for insurance? I have no idea. It lists all my diagnosis' with POTS being the first one listed. Maybe there is no code for a hyperadrenergic state? He used that term interchangably with hypersympathetic state. I asked him directly on day two when I read his notes and he said I had the hyper state if it was POTS and his answer was no, yet like I said, on the summary that is the diagnosis. Yes there is an extensive report from the neuro using the above terms. All of the ANS testing was normal. My exceptions were the high epi levels and high bp, flushing, sweating etc. I believe my endo did a work up for mast cells. I know at Mayo they were unable to test for histamine for some reason. My tryptase levels were normal. Ana we do have a lot in common! How did you finally end up getting your diagnosis and how are you treating it? Any help would be greatly appreciated. I meet with my rheumy on Friday. I think he will run more tests. Maybe I should schedule with my endo too since the epi levels are high? I really wish they gave me more direction upon leaving Mayo as to who I should see. They said my GP but this is way over his head. -K
  20. I forgot to mention that they prescribed clonidine. .1 once a day to start and gradually building up to .2 three times a day. I am finding that even the small amount adds to my fatigue. They did say it would be a delicate balance between the clonidine and the Pristiq. All I took away from Mayo was yet another diagnosis and another medication. I am beyond frustrated and confused.
  21. Hi, My name is Kris and I am confused and exhausted and hoping that you can give me some information and support. I just spent almost a week at Mayo in Rochester, MN where they did ANS testing on me. I was told that I don't have POTS but rather a "hyperadrenergic state". My norepinephrine levels are 656 supine and 1199 upright. My blood pressure goes up when I stand. I asked the doctor if I had POTS and he laughed and said no. Yet when looking at my medical summary from Mayo my diagnosis is POTS. After doing a ton of searching I realized that I might have what is known as "Hyper Pots" but I understand that Mayo doesn't use that as a diagnosis? All of my symptoms started back in 2008 with a terrible EBV infection. At that time I was dealing with Fibromyalgia and some herniated discs but other than that was fairly healthy. I was a professional horse trainer and very fit. I was 5'9" and 160 pounds. We could not seem to get the EBV under control. My titers were 2,850. Soon I began having issues with the tendons in my arms and feet. I had extreme pain in my joints and developed Raynaud's phenomenon, severe colonic inertia (I could not have a bowel movement), flushing, malar rash, excessive sweating and vertigo when I would stop exercising. After seeing many rheumatologists I was diagnosed with scleroderma. This diagnosis didn't seem to fit so I made an appointment with the leading sclero doctor and was told that I don't have sclero, rather I have undiferentiated connective tissue disease or UCTD because I had no positive ANA and no dialated capillary loops in my nailfolds to fit the diagnostic criteria for sclero. I did exhibit some signs of lupus (the malar rash) and sjogren's (dry eyes and mouth) and the gastroentestinal issues which could be related to sclero. I also ballooned in weight and I now weigh 225. I have NEVER been this big in my entire life! The flushing, sweating and vertigo started taking over my life. I would have vertigo when I would ride my horse and when I exercised. I can sweat for up to 3 hours after a ride or run. I flush when I eat or drink alcohol, this can bring on sweating as well. The vertigo was at it's worst when I STOPPED exercising. I would get tunnel vision and the world would spin and I found myself very scared on more than one occasion that I would pass out. This has kept me from riding as well as exercising which I know is not helping my condition. I also developed cold urticaria and severe intolerence to heat. I tested positive for cryofibrinogen but was tested again for it at Mayo and it was negative. Mayo was very thorough, they left no stone unturned. I saw a neurologist, gastroenterologist, vascular doctor, ENT, cardiologist. They found that I do have severe vasospasm in my fingers when immersed in ice. I have fluid in my mastoid sinus area (another long story there) high norepinephrine and high normetinephrine. The gastro doc was a waste of time. Once she saw that the neuro didn't think I had an ANS issue she basically wrote me off since she was there to determine if the ANS was causing my constipation. In August something strange happened. I started seeing a new GI doc for the constipation. He started me on Pristiq which is an SNRI. Two weeks later I was having severe diarrhea, up to 12 times a day. I was able to get off all of the laxatives I was on but somehow ended up hospitalized and after doing a biopsy they discovered I had microscopic colitis. How can this be when I've been struggling with constipation all this time? I am still taking the Pristiq, which may be causing the high NE levels but it is the only thing that makes me have a bowel movement. The colon issues were so severe without it that I was having to do a bowel prep every Friday night after work and spending all weekend on the toilet. This is no way to live. I had the flushing, vertigo and sweating BEFORE starting the Pristiq but the sweating definately got worse on it as well as my headaches (I have had migraines since I was 13). Anyway, I guess I am just looking for opinions on what you think this is? Could it be hyper pots? Could my connective tissue disease be related to Ehrler's-Danlos? I have extremely hypermobile joints, especially my elbows, wrists and thumbs (thumbs dislocate very easily as well as my shoulders) I meet with my rheumatologist on Friday. He is a God send and I know he is hoping that the testing from Mayo will give us new insight and possibly a new way to treat my many conditions. Any information that you can enlighten me with would be great. Thanks for reading my novel! -Kris
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