futurehope

My POTS doctor, a neurologist, ran the tryptase and histamine tests which turned out negative according to the lab, though my tryptase of 4, according to the MC forum, is higher than the normal of "1". I've recently had biopsies done during an EGD and a colonoscopy which I took along for Dr. Afrin because he wanted his lab to run mast cell testing on them. As for testing, Dr. Afrin does quite a bit and knows a lot more than any local doctor what tests to do and how to interpret your history in light of your test results. I trust him more than any of my other doctors when its comes to MCAS issues. He is a researcher who sees MC patients all day, so of course he knows more. I emailed him my list of symptoms (including POTS) and asked him if he thought I should pursue an MCAS diagnosis, and he said "yes". So, I faxed him all my doctors' notes and labs from last year, plus any other items I had showing my dysfunction, and his secretary called and said she would set up an appointment. As far as I'm concerned, this Dr. Afrin visit was a necessary step in unlocking my multiple disfunctions. If you are able, I would think about pursuing this diagnosis if you suspect it is possible.

LindaJoy, I asked for a copy of my test results. There were 17 vials of blood drawn. There is no way I could list them right now since I have no idea until I see some of them. I also gave the doctor blocks and slides from my recent colonoscopy and EGD so that they could send them to the MUSC pathology lab and stain them specifically to look for mast cells. My tryptase blood test taken locally by my POTS doctor was 4.0...in the normal range, but according to the mast cell forum, anything above 1.0 is suspect. When multiple body systems are affected with "something", you have to dig deeper to find the underlying cause. Besides MCAS, I suppose some people on this forum could have Ehlers-Danlos or a Mitochondrial disorder, or endocrine issues, just three things that come to mind. Issie, I had been on other meds like Zantac, Pepcid but I had some side effects I cannot remember right now. I appreciate you reminding me about the DAO. I read about it on the MC forum as well. Maybe I'll be switching. I vaguely remember the Pepcid giving me insomnia. I cannot remember what the Zantac did.

There is a "like" button. I just noticed it. Do you have MCAS? I am currently taking Dexilant - a PPI Tagamet - H2 blocker (or is it H1?) Hydroxyzine HCL - H1 blocker (or is it H2) Xyzal - H1 (or is it H2) blocker similar to zyrtec Singulair - leukotriene inhibiter Nothing was changed. I'm fairly stable right now, enough to do Dr. Levine's POTS exercise program.

Various tests were done and I will know the results when I see Dr. Afrin again in August. He suspects I have Mast Cell Activation Disorder, but he will not officially give me the diagnosis until he sees test results. I'm suspecting from reading this forum and from reading the Mast Cell forum that my POTS is caused by the MCAS. As a matter of fact, many of my varied ailments from a very young age, with no explanation, have probably been caused by this disorder. Apparently, there is a genetic component to this disorder. I know very little at this point since I am just at the beginning of this journey. It has been a long road, and its been time consuming. I had hit many dead ends, and visited many unhelpful doctors. It has required tenacity on my part, but I do believe I am finally beginning to put my puzzle pieces together. Praise God for the internet and for these forums.

Deconditioning can lead to symptoms. Deconditioning cannot cause a permanent POTS condition, IMO.

FYI, I have an appointment to see Dr. Afrin on April 30th, and I was told to bring the biopsy samples from my endoscopy and colonoscopy with me to the doctor visit. They are kept for years at the lab that was used for me, though my latest biopsies were done this past January. So, my point is, he prefers to look at the samples himself if possible.

It is life threatening to be alive. I guarantee that one day, you will no longer be here. On that note, people with ailments such as ours have an advantage in that they cherish what they do have, and they do not take anything for granted. Every day is a blessing. Live every day like it is your last and you won't regret it. Nobody is guaranteed tomorrow, healthy or not.

I'm glad things are going so well. Just a sidenote....Motrin is a non-steroidal anti inflammatory (NSAID), and as far as I remember, they can help POTS patients feel better - less POTSY, but I don't remember why?! But, staying on them long-term can cause problems so it is not recommended....but may you continue to have an uneventful recovery. Be well.

I'm happy for you that you are getting answers. I'll be seeing Dr. Afrin myself at the end of the month. He's sounds knowledgeable and personable and caring.

I solved my vitamin problem by ingesting 3 dessicated calf liver pills/day in order to get my B vitamins. If I were you, I would wonder about the soy.

1. exercise constantly until they started feeling better?​ yes 2. find that they felt better exercising with their arms moving around than just with their legs? I don't know. I've always done upper and lower body exercises. I don't understand the question?! I use the treadmill exclusively. My knees cannot handle a bicycle or an elliptical machine. The weight training is separate. 3. try to exercise below a certain heart rate level, and if that rate was exceeded did they feel worse the next day? I didn't pay attention until Dr. Levine sent me his exercise program. 4. exercise lying down only? only doing abs and leg weights since I do not use some of the leg machines that can hurt my knees 5. found themselves better after building muscle on their arms? I don't know. I've always tried to hit all muscle groups. 6 found they felt better after they exercised using or built muscle on their thigh (bike riding as an example) or upper arms? I don't know. I've never separated out body parts. I never use a bicycle. 7. Did you push through any crashes or rest through them? Push. I don't give in if I can help it. But.....it depends what you mean by a crash? If I'm sick, or extremely unwell, of course I would not exercise. If I have a fever I would not exercise. Judgment is key here and we are each different.

ACB, Another question. Do you feel exercising every day is the way to go, or are there days off? TIA

ACB, I very much appreciate your post. Blood clot? Those are dangerous. Why would anyone continue exercising with a clot? Why would intervals cause clots, any idea? Be well.

I understand you. I have this disabling inability to adjust to gravity for which I'm always searching for answers. I have bad days. I have good days. For me attitude is everything. I tend not to throw pity parties for myself:it's a waste of energy. My attitude is similar to yours. I intend to live my life to the best of my ability, and I deliberately work to prevent my bodily handicap from taking over my spirit and dragging me down into despair. I always say that "Push" is my middle name. I've spent countless hours pushing myself to sit, to stand, to exercise, to go places, to visit. Sometimes it was super difficult. Sometimes it wasn't too bad. I never look at the bad times as permanent. Tomorrow is another day. I don't give up. Without a doubt I intend to use whatever the Lord has given me to live my life to the fullest, and to be grateful to Him for whatever I have, and for whatever I succeed in, for nothing I accomplish comes easily. It has been difficult. But by not giving in, I am rewarded. I appreciate every task I am able to do. I'm grateful for the small things, like surviving a visit to a relative's house for Christmas dinner, like standing in a park and watching my grandchild. POTS may be something I have, but it cannot "have" me, or take my spirit. This is my life, and I intend to live it to the fullest no matter what. I'm not dead yet, so by definition, I am here and I'm striving, always striving. I'm still here, and until I'm six feet under, I won't stop looking for ways to better my condition, and for ways to better enjoy my life. Don't give up. It's not over until it's over. Keep on keepin' on. Many people have health issues. What is your attitude towards your problems? Will you give up and give in, or will you keep pushing? You may never be cured, but your life's story will be written by what you did with what you were given. God's blessings to all.

I just started about two weeks ago. Was wanting to hear from others. What are you supposed to do after the three months is over? Thanks in advance.

Hilbiligrl, I have a good guess of what happened to you because something similar happened to me. My story spans 6 months, and I don't feel like typing it all out. In all likelihood, when your tooth was refilled, the pressure of pushing the filler in made a hairline crack in your tooth. It only takes this hairline crack (which often cannot be seen in x-rays), to allow bacteria to enter into the pulp of your tooth. Voila....infection, and nowhere for the pressure of it to come out. Sometimes a pustule will be showing on the gum I'm glad you're trauma is over. I wouldn't wish this on anyone.

Christy, I favor having Dr. Afrin review my medical history and ruling MCAD in or out. According to the people on the Mast Cell forum, on the right combination of meds, they can feel quite well. If something happens, they know what to do and who to ask. If you have this disorder, you need to know about it. How else would a doctor or surgeon be able to deal with me if they didn't know? That's my opinion. The Mast Cell forum I frequent is: http://mastcelldisorders.wallack.us/yabb/YaBB.pl

I'm traveling by car from Baltimore, but I can do it. I just finished a driving vacation from Baltimore to Orlando FL, so I will do this, Lord willing. It's been a long time of continuous investigating for me, with many doctors looking at me like I'm a hypochondriac. Well, if you're life has been taken away from you and nobody seems to know the reason, you keep investigating and praying. I could have pursued this years ago, but for some reason, I thought "No, there's no way I have this. I do not go into anaphylactic shock." Apparently, not everyone does go into shock. Some people "leak" on a constant basis and this causes their POTS symptoms. I'll let you all know. Maybe, this will wind up being a dead end. But.......I'll never stop trying to help myself feel better.

As I have frequented this forum for years, and the mast cell forum for a while, it occurred to me I might have MCAD (Mast Cell Activation Disorder). I wrote down all my different medical complaints and faxed them to Dr. Afrin, a doctor at MUSC who specializes in this, and he accepted me as a patient! Some people win the lottery and get excited. I get a good doctor and get really excited! This has been over 10 years, with myriad doctors looking at me like I'm a mental patient. I don't know where this is going to lead. I will see him April 30th and let you all know in case there is someone else out there who could benefit.

Hi Maiysa, I noticed you had your thyroid removed for cancer, and that you have dysautonomia as well. I'm in the same boat, and wanted to talk with you. Maybe we could use the message feature of this bulletin board, or maybe you could give me your email?

I can relate to the original poster. I was on this forum quite a bit at the beginning of my saga. I was trying to learn as much as possible to help myself. I believe we can different reasons for displaying POTS symptoms. After having this for at least 10 years, I do not frequent this forum as much. I constantly push myself, even if "I don't feel like it". I also intend to live my life to the fullest, no matter what. So, I can totally relate. My life philosophy has served me well. I hope I can encourage others to seek help, push through the bad times, get good doctors, but overall.....LIVE YOUR LIFE! God bless everybody for your fortitude.

Well, good. I have consistently refused to ride "The Tower or Terror" and now I know why. On another note, the Soarin' visual "ride" at Futureworld at Epcot made me sick. The seat is still, but the scenery is gliding over "California" and over other heights. I hated it. I hated the feeling of falling and of looking down and gliding over landmarks while my feet were dangling. Ugh! No, skydiving is out for me. The problem is...there may be someone out there that is not yet aware of their body's difficulties, and that person may go skydiving and end up killing themselves because they passed out. You could have wound up as a casualty. I'm glad you're still here.

My suggestion is DO IT! I am currently sitting in a motel room with my driver (my husband) and my chihuahua after a 9 hr car ride from Orlando, FL to Wilson, NC. I still have a 5 hour leg to go to Baltimore, MD tomorrow, but I would do this again. I prefer riding in a car to airplanes anyway, which was not always the case. DO IT. Live your life. No matter what accommodations you need to make for your condition, do it. You will learn via trial and error what works and what does not. Do it. This is your life. Go. You may not be a healthy specimen, but you are alive and capable of more than you know. You cannot allow fear to be your driving force. Why not attempt a shorter version of a trip to begin with to build up your confidence and to give you ides that will help? Let me know what you decide.

Yes, that sounds fabulous! I'm hoping I will eventually find my magic set of helps so that I can sing and speak without shortness of breath.

First off, for the past year I have been unable to sing, usually in church. I can sing a bit if I'm seated. If I am walking, I'm frequently short of breath, but able to keep walking and keep up regardless?! I'm wondering if there is any explanation, especially in light of the fact that I just accomplished what would have been an impossible feat 10 years ago.....I walked around Disney World for three days?! (Thank you, Lord!) I still had shortness of breath, but it doesn't make sense to me since I can walk. It may take me a bit longer up the hills, but not overly long. My heart has just been thoroughly checked out. I'm on Singulair (no asthma diagnosis, just possible MCAD), Atarax, Xyzal and Tagamet (H2 and H1 blockers). Any ideas? BTW, I have been doing some walking on a treadmill for 20 minutes a day, and even though I'm short of breath, my heartrate is on the target zone and I am able to walk?! Of course, I'll ask my doctors if they have any idea of why I'm short of breath as well, but I thought I'd ask you all first.