Victoria

I always have one more question, don't I? My QSART was abnormal in '02. Does this mean I do have small fiber neuropathy? If so, does this add credence to my ANS dysfunction?

Thanks much for the FYI. I'll go ahead and include my endo testing. My Norepinephrine is high, but to date, no one has made an attempt to connect the dots, and I definitely don't see that in my future here locally. I had one tilt table back in '02 or '03 but norepi wasn't checked when they did the TTT. What a waste of time and $$$ that was. I don't care how long it takes to get in to see him or if the follow-up is difficult. Knowledgeable yet slow care is better than no care at all. Thanks again!

I feel lucky if I'm able to get 6 hours of sleep per night. Truth be told, I feel worse on the rare occasions when I get more sleep than that. Tachycardia, respiratory weakness and physical pain always push me out of bed in the mornings. But when I was young (and prior to perimenopause) I was quite the opposite — I couldn't get enough sleep. I'd go to bed at 7:00 pm and could sleep until noon or later and still take a good nap during the day.

I've finally got my records prepared and ready to mail off to Dr. Grubb, but I have one quick question. I have a history of intermittently low ACTH, cortisol, aldosterone, growth hormone, testosterone and prolactin levels. They aren't necessarily all low at the same time, but one or two are typically low. Are my endocrinology labs pertinent enough to dysautonomia to send to Dr. Grubb? My endo absolutely will not treat me for the low levels, so I wonder if I'd be beating a dead horse by including them? For those of you who know Dr. Grubb, what do you suggest? Thanks in advance.

Sending a collective thank you to all who replied. I've since composed myself and finally have my medical records ready to mail to Dr. Grubb. Alicia, unfortunately nothing has changed in the medical community. I've been actively searching for a diagnosis for 29 years. But I'm absolutely positive my life will take a turn for the better once I get to Ohio. You are all awesome.

I'm so sorry for what you're going through. I am very familiar with the crushing feeling in the chest and being in fight or flight mode (adrenaline, anxiety). I don't even handle minor stress very well, but what you experienced was major IMO. Your body has no control over your reaction to outside stimuli. Please try to totally disregard what that very cruel person said to you and try not to dwell on it. I'm getting a much better handle on this with my regimen of H-1 and H-2 blockers. But I'm not saying I don't still have episodes when I'm under a great deal of stress. The "storms" are much more manageable now that I'm aware of how to deal with it. I will be keeping you in my thoughts.

You are all an incredible support to me. Thank you so very much. I had extensive testing at two separate facilities (one was a very prestigious clinic) to rule out somatization disorder and/or malingering, and I passed all of them. All of my physicians have access to my past and recent medical records, including the psychiatric testing. This guy should have taken the time to read before he put that erroneous entry in my records. I will be writing a letter to ask that this entry be removed.

I've been bombarded with so much stuff lately I don't even know where to start. At this very moment I want to wave the white flag and surrender. Maybe tomorrow will be better. I saw the cardiologist at the U (even though I have my own cardio) and thankfully, he also deferred me to Dr. Grubb. But I received a letter in the mail Sat. from this cardio, and along with my other diagnoses he decided to add that he believes I have somatization disorder. Why do so many docs think they're board certified psychiatrists? I figured this was coming because he pointed out that my BP and HR were normal at my appt. and he also stated having symptoms while turning over in bed or while sitting does not fit the picture of someone with an autonomic problem. This really irks me, but I'm trying not to take it personally. I had an endoscopy/colonoscopy Thursday (I have Barrett's Esophagus from untreated acid reflux) and even though they snowed me with Demerol and Versed I was wide awake for the whole procedure again. Ooooooo, the agony! They ended up having to give me oxygen for about an hour because after they changed my position on the table my HR went from 61 to 90 and my oxygen from 96 to 82. I'm still feeling awful from the Demerol and Versed and got myself into a bit of trouble today. I was in town with my two Granddaughters and I started getting that sinking feeling along with severe muscle pain in my pain. Next thing I knew my heart felt like it was being severely overworked (I could see it beating through my shirt), I couldn't hold my head up and I had to sit/lie down. It was that intimate "death" feeling I always get when I start circling the drain. Thank goodness my oldest Granddaughter has her permit or I don't know what I'd have done. I should have known better than to risk an outing after a procedure like that. I'm not looking for sympathy, I merely needed to vent to those who can relate.

Hi Patti, I have Sjogren's with dry eyes, etc. and Mayo put in my punctal plugs. The procedure was simple and painless. The plugs helped quite a bit, but they're still dry. Better than nothing at all, though. Sending your daughter a big ((((((hug)))))).

Carbs make me feel absolutely wretched (like death) and I can feel my heart working extra hard. I've eaten a very low carb diet for about 24 years now just to stay afloat. My thought is that carbs may be harder to digest, thus shunting more blood to the GI tract to aid in digestion, and away from other vital organs (the heart). The trick for me is to eat very tiny portions of carbs fairly often, but potatoes are an absolute no-no for me. Hope someone calls me out on this one if I'm incorrect since I'm a relative newbie.

Thanks soooo much for sharing your photos with us. Knowledge is power. I have many that look like yours — they started out as red bumps but turned brown later (freckle like).

Thank you very much for the validation, Julie. My son also has Narcolepsy with Cataplexy, so I'll check with his neuro to make sure it's okay for him to take the H-1 and H-2s. He's really sensitive to medications because of the Narcolepsy, and I don't want to push him over the edge at the end of the school year.

It seems livedo reticularis, telangelictasia and petechiae can be related to mast cell disorders and I have all of these. My livedo occurs on my legs and the tops of my feet. Feet and legs are very cold and "dead" when it happens. Mayo rheumatology clinic told me I have this, but didn't investigate the cause. Could it be from blood pooling? If I go to bed with cold feet I cover up with numerous blankets but still wake up to ice cold and lifeless feet. Does this sound familiar to anyone? My 14-yr. old son has several types of rashes and has had problems with his T Cells in the past. The teaching hospital we go to told me the T Cell problem was temporary and that I was overly concerned. Could this be caused by MCAD? I'm not looking for a diagnosis here, but I'd sure like some feedback on this photo of one of my son's facial rashes (he has an appt. with his pediatrician so I can get him referred to dermatology). He has exercise intolerance and has never been able to physically keep up with his peers. The heat just makes him feel awful. He also has spells of rapid heartbeat and complains of feeling dizzy and "weak" with nausea. He has always been intolerant of standing in place and he's never been an active kid. In other words, he's very much like his Mom. http://i159.photobucket.com/albums/t148/victoriancurtsy/Rash/11-rash.jpg

Well, I'm all in with both feet if researchers aren't yet on board. 8% is a large-ish number for it to be anecdotal or coincidental. Interesting about your family members. Are they not diagnosed by choice, or are they having a difficult time with physicians? I'll have to wait until tomorrow to read the PDF, I had a colonoscopy/endoscopy today and I'm not up to par just yet. But I am looking forward to the read. Thanks so much!

I will get my internist's attention about MCAD and the meds you mentioned, but I've only seen him once so far. I'll attempt a discussion with him at my next appointment. That link is very interesting. Piebaldism; does it only pertain to a white patch of hair, or can it be any color? I have a Granddaughter who was born with a wide stripe of very dark hair and she also has some skin issues. Is this study actively recruiting, or has it been completed? Has anyone here participated? Thanks for your reply. It's full of good information!

The smell of Febreeze doesn't bother me, but countless other things do. I can wear one specific perfume, but I have to be very careful walking through the make-up and fragrance departments and being in crowds where women are apt to wear perfume. I also get what you're saying about your lungs flooding with mucus. Mine can also clamp shut, depending on what the trigger is. A self-cleaning oven is a very good example. I've given up on nuts for a while because I've reacted to two different types and the additional pain is too much right now. But I'll get back to them later after I get some other issues sorted out. I'm taking Claritin, Benadryl, Ranitidine and Zantac and I am improving! It really isn't difficult to pinpoint triggers now that I'm paying close attention. I suggested Singulair to my internist but he prescribed Albuterol instead. Albuterol makes me extremely tachy and I can feel the adrenaline begin to surge a few minutes after inhaling it. My Mom and one of my sisters react the same way to certain smells, but they don't get horribly ill like I do. They say it gives them migraines and makes them feel dizzy and sometimes confused and short fused. I've been meaning to ask, does MCAD have a familial component, or could they be dealing with something entirely different? With much appreciation and hope, Victoria

I was in my son's garage while he was working on my car yesterday. He had the wood stove stoked (stinky) and I could smell the catalytic converter on my car. I had a horrible night last night and I didn't sleep a wink (yawn). I'm still having diarrhea and polyuria today and my adrenaline is through the roof. I tried to sleep today and couldn't because of the adrenaline overload and countless trips to the bathroom. The odor from the stove and catalytic converter definitely pushed me over the edge. The other thing I've noticed is that I've developed complete intolerance to all nuts, but I don't have a nut allergy. If I eat just a handful I wake up at night with horrific GI pain. Darn! I love nuts so I'm hoping this passes. Sure grateful you've all given me food for thought about MCAD and anaphylaxis. I'm paying close attention to environmental stimuli and connecting the dots. Thanks to all!

Excellent video, thanks so much for posting! It is eerily familiar, but I've been told my problem is with my lungs (which it isn't). No one has considered anaphalyxis for me just yet. I feel empowered with this information. Thanks again!

I have low potassium frequently and it does affect my HR. The difficulty swallowing and labored breathing are up for grabs as I don't yet know if it's the result of low potassium. POTS, or both. I have been unsuccessful in titrating up to the 0.1 mg of Florinef, so I only take 1/2 tablet. When I tried taking the entire tablet I had a horrible migraine and had serious panic attacks. Ugghh.

Thank you for sharing, Sarah. What you said makes sense and seems to also apply to me. Dr. Grubb's info about taking three times as much energy as an unaffected person? My heart and body feel like they're in frequent state of marathon running or cardio exercise. Cerebral hypoperfusion seems the only logical explanation for my brain fog and the huge drop in my IQ. I joined the mastocytosis Canada forum. Thanks also for that info!

Thank you so much Julie and Sarah! You've given me a lot of great information and I sincerely appreciate it. I'd have come back sooner but my laptop keeps overheating and shutting down. I've learned to keep the poor baby on an ice pack while I'm using it. I'm intimately familiar with all of the symptoms you mentioned, Julie. They don't crop up at the same time, but sometimes in twos or threes. I have watery diarrhea when I'm at my worst and have lost a lot of weight from it over and over again. I was put on creon for suspected pancreatitis (elevated pancreatic enzymes and pain), but the creon didn't help. The croaky voice is another symptom that comes on rapidly and can last for a week or longer. Blocked airway is another. Tachycardia in the 200s. Sense of impending doom. Flat-out panic. The tinnitis and buzzing in my ears can be so loud I feel like I have locusts living in my brain. I also get itchy, but only at rest. Another one (strange as it sounds) is a sense of something crawling on my skin, through my hair and in my ears. This only occurs when I'm very still or lying down. Is norepinephrine is high when I'm on my feet or when I'm lying down? What causes the symptoms when I'm at rest? I saw an article about MCAD and it mentioned increased dopamine. This just can't be anything else since I'm responding well to the H-1 and H-2 blockers. Also, I have EDS (hypermobile type with blonde hair, blue eyes), a small heart, mitral valve prolapse, and those are all red flags. The brain fog is killer. I had neuropsychiatric/IQ testing when I was having a good day and my IQ was in the 88th percentile — normal bright range. I had the same testing at Mayo and I could barely hold myself up in a sitting position that day. Anyway, my IQ at that time was only in the 9th percentile! I was considered profoundly intellectually impaired! I came back home and my IQ was immediately tested again and it was back up to the 88th percentile. I'm wondering about my high eosinophils? I'm thinking they may be increased with mast cell activation? How about something that resembles hyperplasia? I had a vaginal hemorrhage at age 26 that required a D&C. The pathologist said if I was older he would definitely refer to it as hyperplasia, but because of my young age, didn't want to use that term. I've heard I have hyperplasia before, but I can't recall right now what it pertains to. I can relate to your experience with the epi, Julie. I have an epi pen here, but I'm afraid to use it because of the tachy and anxiety that goes along with it. Gosh, what if I made it worse? Zoiks! I think my heart or brain would explode. Steroids do the same thing to me, but I sure don't understand it. My doc just prescribed Flonase and although it helps with my constant "allergic rhinitis," it makes my heart feel like it's working harder, I feel a tad bit more jittery and anxious, and I'm having more trouble sleeping at night. And what's up with the overwhelming fatigue and lethargy? What is the hypothesis? Or do we not all feel that way? You guys are awesome and I'm learning so much from you. I don't feel nearly as frightened now that I've read your replies.

I've been trying to read about MCAD and am now wondering this: What are symptoms of anaphylaxis as it pertains to MCAD? Are symptoms different for everyone? Does a person always flush when experiencing anaphylaxis? Can anyone share their anaphylaxis symptoms with me? I've had some frightening symptoms through the years, but anaphylaxis wasn't considered, so I'm not sure about this even though I respond to H-1 and H-2 blockers. Can anyone clarify for me? BTW, I saw the EP cardiologist Friday and he ordered an ECG. This time I had only borderline T Wave abnormalities with sinus rhythm (my T Waves are usually inverted). He said the ECG was unchanged from previous tracing, but this facility didn't even have a previous ECG to compare it to. Oh, well. The cardio said he didn't see any signs of an autonomic problem (big sigh but no worries because he doesn't specialize in the ANS). Also, I just got done wearing my 48-hr. holter. At least this EP cardio deferred my care to Dr. Grubb.

Grrrrrr. I'll never understand why key symptoms and information from the patient are ignored or disbelieved. Gone are the days when <most> physicians embraced a challenge. Big sigh. . . .

Jared, There are days when I wonder if the Florinef is helping me or hurting me. So sorry to hear Florinef didn't work out for you. Good advice about salt and water. I do take sodium chloride tablets, I'd melt without them, and I waste sodium in my urine. I guess we're all the same, but different. I will keep you posted on how it goes with Dr. Grubb. I finally got through all of my medical records and am getting ready to fax them to his office. Whew, what an enormous task! Thanks for your kind words about the surgery, I really appreciate it. I got to take my bandages off today and I'm a bit shocked at how big and long the incisions are. Oh, well. At least they got it all. Take care, Victoria

Julie, Oooooo, so sorry to hear you had a GI virus. I know how illnesses wreak havoc with my ANS and I'm assuming the outcome is the same for all of us. Glad to see you've recovered? and good to see you back. Thanks for being delighted with me about my ANS progress and the surgery! The skin cancer on my face was basal cell with deep tissue involvement and I had a pre-melanoma on my leg. I have a lot of stitches and am in a decent amount of pain, but thank God the surgeon got clear margins. Honestly, I don't think the EP I'll be seeing is worth jeopardizing my progress. I just looked him up and although he's an Associate Professor he looks pretty generic — his bio says nothing at all about the ANS. Your skepticism definitely isn't misplaced. I've had a lot of holter monitors, several with long runs of tachy, some into the 200s. And I always have inverted T-waves and a messed up P-axis. But each time the cardios said I must have been running or doing heavy exercise. It mattered not that I told them I was bed ridden and the most exercise I got was possibly crawling to the bathroom or simply turning over in bed. They ignored my statements and/or acted as if I'd gone completely gonzo. About the Florinef, I'm only able to take 1/2 of a 0.5 mg tablet. Any more than that and it messes with my ANS even more by giving me all day severe anxiety. My endo wanted to bump me up to 1.0 mg because my sodium is chronically low, but I said n-o to that. Definitely not worthwhile in my case. Thanks for the valuable input, Julie, I appreciate it. I think I've made the decision to go ahead and see the EP at the UIHC to pacify the internist (so he can cover his derierre), but I'll save the important stuff for Dr. Grubb. Hope you're feeling better and you're at least back to center, Victoria