juliegee

Hmmm, Sue- Magnesium above or at the normal limit, but I wonder if you're absorbing it or utilizing it- with hyperpots and hypoglycemia? It also helps convert glucose to energy. I've got the same DXes... Funny you should mention throat spasms- it is the HARDEST pill to swallow for me. I have to totally relax and focus on opening my throat to get it down. It's chalky and "catches." From what I understand, you are right- getting the magnesium in balance with the calcium is very important. I think we are supposed to take 1/2 as much magnesium as we do calcium if you are healthy. Anyone who is stressed-I assume that means orthostatic stress- drinks alcohol, or exercises has much higher requirements. I've had a very difficult time tolerating calcium too. I have resorted to Tums as any other form causes great acid reflux for me. Issie- you are right about it lowering BP. Mine is probably naturally going a bit higher as I age, but for me, it had made it less labile. I get scary low readings 85/55, but when I am stressed, mine goes up nicely Magnesium prevents those highs and lows- keeps it more stable. And, because it relaxes vasculature overall, it has helped my tachy. It is probably best for anyone who deals with excessive vasoconstriction.

The short answer, NO, or maybe I've had particularly bad luck I've seen several vascular surgeons (in and out of the hospital) as my Reynauds is so severe. None have had any interest in the big picture. They prescribe calcium channel blockers. When I can't tolerate those as they drop my BP too low and set off my MCAD, they wipe their hands of me. From what I've seen, they deal with high blood pressure, blocked arteries, blood clots, etc. Once they rule that out- poof- you're cured Lots of old, heavyset people in the waiting room- no interest in our population.

I got an extremely good night's sleep the very first night- I suspect I was pretty deficient. As far as speeding up bowels, that may take a few days- same with the other stuff. My husband's BP was getting high when he was stressed. Since being on magnesium, it's been very steady- in a good range. What dose are you taking?

I know I rave about Magnesium all of the time . I started taking it due to an off-hand remark that my allergist (from Mayo) made. He was commenting that I needed to better treat my autonomic stuff. I shared my frustration and asked WHAT was left to try. He said, "Magnesium is being used with amazing results." First I had ever heard of it. Since then, I have been using 500mg of magnesium oxide every night. If you've never used it before, beware. It is a fabulous sleep aid. Only take it in the PM, right before you are ready to sleep. Used over time, my body has adapted, somewhat, but it still totally relaxes me. If you need help with a slow GI tract- That's also one of the side effects. Most importantly, it has somewhat normalized by wide HR swings with posture changes and wide BP swings. My overall HR is considerably slower with magnesium and my overall BP is less labile. In the winter, I used to be so affected by the cold weather, that my whole body vasoconstricted. My extremities would turn dark purple/black, my BP would rise, I would even get chest pain. On magnesium, THAT isn't happening. Now, I read that it also helps in preventing migraines! Looking back, mine have been better and less frequent. I have trouble tolerating so many meds that it is wonderful to find a natural mineral that has so many benefits. I just wanted to share. http://www.neurosciencesjournal.org/_cgi-bin/DetailArticle.asp?ArticleId=1624 Relation between serum magnesium level and migraine attacks Mahnaz Talebi, Dariush Savadi-Oskouei, Mehdi Farhoudi, Solmaz Mohammadzade, Seyyedjamal Ghaemmaghamihezaveh, Akbar Hasani, Amir Hamdi ABSTRACT Objectives: The determination of serum magnesium levels in migraine. Methods: In a case control study performed between January 2007 and December 2007 at Tabriz University of Medical Sciences, Tabriz, Iran, 140 migraine patients were enrolled and their level of serum magnesium was determined and the results were compared with 140 healthy people who did not have any headache, kidney, or gastrointestinal disorders, and no consumption of magnesium complements. Results: Migraine patients (22 male, 118 female) with a mean age of 33.82+/-10.31 and 140 healthy people (26 male, 114 female) with a mean age of (34.19+/-9.95) were enrolled. Forty patients had aura and 100 patients did not have aura. The average serum magnesium level in the patient group (26.14+/-4.3) was significantly lower than the control (31.09+/-4.32) group (p=0.000). There was no significant difference between the mean level of serum magnesium in patients with migraine with aura and without aura, however, there was a significant linear relationship between the amount of serum magnesium and the frequency of headache. Conclusions: Serum magnesium in migraine patients was significantly lower than the normal population and related to the frequency of migraine attacks, supporting the use of magnesium in prevention and treatment of migraine.

From my understanding (please correct me if I am wrong,) Vanderbilt will help you DX MCAD, but doesn't provide any ongoing treatment.

Beta blockers CAN (in some instances) RAISE blood pressure & INCREASE vasoconstriction. "Beta blockers must not be used in the treatment of cocaine, amphetamine, or other alpha adrenergic stimulant overdose. The blockade of only beta receptors increases hypertension, reduces coronary blood flow, left ventricular function, and cardiac output and tissue perfusion by means of leaving the alpha adrenergic system stimulation unopposed. The appropriate antihypertensive drugs to administer during hypertensive crisis resulting from stimulant abuse are vasodilators like nitroglycerin, diuretics like furosemide and alpha blockerslike phentolamine." http://en.wikipedia.org/wiki/Beta_blocker "Evidence also suggests that beta blockers should be avoided in the acute phase, given the propensity of some of these agents (beta blockers) to worsen coronary artery vasoconstriction and increase blood pressure." http://www.medscape.org/viewarticle/571652 "Acute treatment with a beta-blocker is not very effective in reducing arterial pressure because of a compensatory increase in systemic vascular resistance. This may occur because of baroreceptor reflexes working in conjunction with the removal of β2 vasodilatory influences that normally offset, to a small degree, alpha-adrenergic mediated vascular tone." http://www.cvpharmacology.com/cardioinhibitory/beta-blockers.htm Additionally, beta blockers CAN cause vasoconstriction in your lungs causing chest pain and are contraindicated in anyone with asthma or allergy symptoms.

Here is your closest mast cell specialist- Dr. Lawrence B. Schwartz in Richmond, VA http://www.intmed.vcu.edu/home/divisions/rheumatology.html He's knowledgeable about BOTH mastcytosis & MCAD, but will most likely be a stickler for laboratory proof when DXing MCA. If you can't supply that, he should still be very helpful as long as the regimen helps you. Still don't know about the small fiber neuropathy... Hopefully someone else will jump in with that info.

No advice, Emma. I just wanted you to know that I care & am worried. I'd pop in to see your doc ASAP or even go to an urgent care facility- just to reassure yourself. Let us know what you learn. I'm sending prayers. Hugs- Julie

Gosh Sue, you have me convinced that I have a pheo (the hereditary type) and I've passed it on to Mack. So sad when I read about pheos on Wikipedia. MOST go undetected the patient's entire life and are found at autopsy??? That's a sad sign of health care in our world

My guess is that such a creature doesn't exist- sorry. Mast cell specialists are few and far between in and of themselves, BUT when you throw small fiber neuropathy in the mix- I think that would exclude them all I'm DXed with MCAD and am certain I have small fiber neuropathy as well. I was hoping that any good neurologist could test for it, but others here have indicated that you need to go to a major teaching hospital, like Mayo, to be DXed. (If I am wrong, please correct me.) To further confuse the issue, MCAD presents with many neuropathies. Once that is adequately treated, your neuropathies WILL improve. I have had numb limbs, face, etc. Where are you located? I may be able to direct you to the closest mast cell specialist. AND, if you find your elusive doctor that treats BOTH MCAD & Small Fiber Neuropathy...I will RUN to get in line behind you Julie

Hi Debbie- Sorry you're dealing with this too. My son was stricken at 12 y/o. Many with autonomic dysfunction (both POTS and Vasovagal Syncope) end up having some nerve damage to their GI tracts- causing slower motility and the awful nausea. That, too, was my son's worst symptom. You need to get your daughter to a pediatric motility specialist to check this out. I highly recommend By. Anil Darbari at Johns Hopkins. He, too, relates this mess to the autonomic stuff. He actually performed a GI test called an antroduodenal manometry & had a TTT performed at the same time to PROVE the two were linked. That data helped so much in my son's treatment. If you have a good pediatric GI where you live, you may want to give a GI prokinectic a try. (They speed up GI motility.) IF that helps, you basically know what's wrong as the autonomic stuff is already DXed. My son uses a tiny dose of liquid erythromycin called Ery-Ped about 15 minutes before each meal. It irritates his stomach and small bowel just enough into emptying more quickly. I have also had to take it for brief periods and it turned the nausea into sweet hunger. (By no means allow any doc to put her on REGLAN. It is another GI prokinetic and a BAD drug/awful side effects.) I KNOW what you mean by finding a doc who treats the whole child. We did at Hopkins, Dr. Peter Rowe. He is the head of their pediatric Chronic Fatigue Clinic. He regularly sees kids with autonomic issues & is WELL versed in all that goes along with this- including the GI stuff. Unfortunately, he is not accepting new patients BUT may see your daughter if you are referred from within Hopkins, by Dr. Dabari. That's how my son got in with him. He is the BEST. If she can't get in with him, Dr. Julian Stewart in New York is another great ANS doc. My son is 19 y/o now and has been on florinef for 7 years. His dose has dropped dramatically, from .03 to .005mg per day. Many kids have to be on it for a long stretch. It seems a bit optimistic to think that 3 weeks would do it.... Once again, so sorry this has stricken your family. Your daughter can become much better once she gets the right med/lifestyle regimen figured out. My son went from bedridden and homebound to living independently at college. Hugs- Julie

I am guessing that the BB actually caused some vasoconstriction that worsened your orthostatic hypertension AND also caused some pulmonary constriction resulting in your chest pain. I was shocked to learn that BB's can actually cause vasoconstriction! If your doc was wanting to relax your vasculature to lower your BP, maybe a calcium channel blocker would have been a better choice. BTW, Dr. Grubb's theory sounds good too- maybe a little of both? If you have any allergy or asthma issues, beta blockers are contraindicated. CCB's are better in that case- although I could tolerate neither. Hope you find something that helps- Julie

Wow, thanks derekliz. Nest time they decide to scan my body looking for aneurysms (run in the family), I'll try to go there!

Very interesting, Rich. How can I find out if there is one in GA?

How frightening- so sorry! I pray this is just a freak occurrence, but collapsed lungs can be associated with EDS. Once she is recovered, she needs to see a geneticist. I'm sending good thoughts and prayers- Julie

Ha, mine gave up on me and handed me off to a looney rheumy He said I was above his pay grade.

That's very helpful, Janie. It doesn't make me feel the need for a skin biopsy as my treatment probably wouldn't change. I, too, get the all over bumps on my hands and feet. I was told they were chillblains. I also wear wool sock- all year long. They are way better than slippers! Thanks for the great info. I TOLD you we have the same version of this madness

AMAZING STUFF! I am so happy for your son. Good confirmation also that he still needs his meds. He is still sick, on the best med regimen that you've been able to come up with...and functioning!!! I will pray that he keeps up this awesome progress. Hugs- Julie

To add to this thought, I was in the best shape of my life when I was DXed. I was well enough to be running 4 to 5 miles every other day. I think Dani's right, WE don't get this from the normal risk factors- not that they can't exacerbate things. We get this as a part of our overall disease process- whatever that is

Oh Christy- This brings tears to my eyes. I have watched your son (and subsequently YOU) suffer for years now. Back at school??? Hallelujah What a blessing. Mack could have benefitted so much from this program. I did my best to rehabilitate him from home and it was a struggle. Has his med regimen changed? What made the most difference- exercise? There's nothing like getting support from your peers and our kids have very few TRUE peers, who "get" it. I am over the moon for you- Julie

Yes, I've had this same testing done before too- several times. I guess mine was normalish too- despite the purplish/black extremities Where did they take the skin biopsy from, Janie? I know you have small fiber neuropathy. Is that how they SURMISED it was the capillaries and arterioles? Did that change your treatment? I ask as I KNOW I have small fiber neuropathy, but have never been tested. I'm trying to figure out if it is worth it. Thanks- Julie

Interesting. I read about the test and am guessing that it might not be accurate on many of us. Those of us with hypovolemia and vasocontricted extremities can't even get accurate readings with pulse oximeters. I am doubtful that this could pick up a signal. This sort of reminds me of the testing I had to rule out peripheral arterial disease when I was last hospitalized with black fingers or toes- can't remember which My doc based her DX on the fact that I had severe Raynaud's, diastolic dysfunction, and I failed a 6 minute walk test- my sats dropped below 80% after just a few minutes. All of this occurred when I was in the best shape of my life. I was devastated. Another echo showed NO diastolic dysfunction. A pulmonologist ruled the 6-minute walk test faulty because of my Raynaud's, which I still deal with. So, do I have endothelial dysfunction? Who knows....

YES- it's so ugly. Add no fat (connective tissue thing) & Raynaud's to that and my hands are downright scary looking

Good point, Rissy. We've always taken hypovolemia into consideration when explaining polycythemia; BUT if I understand correctly, it could also mask a normal B-12 serum test... At some point, I will try gluten-free again, Sue. You are sooo smart and sooo right to do oodles amount of research beforehand as there are so many ins and outs to it. I do eat brown rice, Issie! I try to eat NO white foods because of low glucose issues as well, but with a slow GI tract, I have to overcook the the brown stuff to make it palatable.

YES- you are not alone with the high B counts. I have read others that have that as well. I truly believe that dyregulation or dysfunction of B vitamin absorption, utilization, etc. is behind dysautonomia. My numbers always come back screwy showing SEVERE deficiency, but when the specfic serum level is tested- it is NORMAL. Like many, I use CFS/ME interchangeably with dysautonomia. In fact, oddities with B Vitamin levels are listed as criteria/symptomology for CFS. You are most definitely on to something. I am low-gluten too- just naturally. I was VERY shocked by my response to gluten-free. It is very telling. Not sure what it is saying though... Julie