Forum Replies Created
-
AuthorPosts
-
PrettytiredParticipant
Momof3, I will have to look & see if my copper levels have been checked- I don’t believe they have. I’ve been reading about low copper and it’s relation to connective tissue disorders. Have you found anything else out?
PrettytiredParticipantI also wondered in this happened: Increased histamine can cause an increase in adrenaline to combat the histamine. I expected to crash once the adrenaline wore off but it hasn’t happened yet. I also don’t feel that manic feeling that I get sometimes (so I question myself about the adrenaline rising…).
PrettytiredParticipantIs there anyway I could have LOW histamine levels, but still have MCAD? I was reading about the link between low histamine = high copper levels and that taking Zinc can help balance that out. Now that I think back, I tried Zinc and seemed to be feeling better. I’m terrible about taking my pills so that dropped off at some point. Also, last night I ate a big bowl of cabbage rolls (with TONS of sauerkraut). I’ve had energy ever since then without an increase in symptoms.
Just a thought, curious to see what your thoughts are.
PrettytiredParticipantYes, I have both horizontal & vertical. I’ve had vertical for as long as I can remember. The horizontal just started about 2 months ago. I can remember having white marks on my nails when I was a little girl…. Mom used to say I got them if I told a lie 🙂 haha. They seem to come & go- good to know it’s related to zinc (but scary that I had them as a child). My nails also flatten out when they get long & a few seem to grow downward. I’d say I have Terry’s nails as well.
As far as the liver goes, I have consistently LOW bilirubin and was born jaundice. My cholesterol was a little high for the first time ever last fall.
PrettytiredParticipantI definitely have POTS. I suspect I also have EDS, but am scheduled to discuss with my doctor June 11th. I’m hoping to get Diamox at that appointment. My symptoms have taken a fast nose dive over the last 2 weeks. I just sneezed & for the first time had that AWFUL pain in my head that others have described. So, I think it would do me some good. And I’m definitely a water retainer! My feet & calves swelled up like crazy this past weekend, my weight fluctuates daily from the water.
I’ll keep you posted once I start the Diamox.
PrettytiredParticipantDr. Diana, did I miss this video? I am VERY curious about what you’ve found (what meds are working); I will volunteer if you haven’t gotten that far yet. So many of my symptoms bother me, but the 35 lbs weight gain is driving me nuts!
PrettytiredParticipantI did realize I have one white mole/freckle. I’m not sure when I got it but I’ve had it for several years at least. No clue what that could be. It doesn’t go away.
PrettytiredParticipantAs I was out searching for more info on Mast Cell Disease, I stumbled across this: http://www.jcadonline.com/telangiectasia-macularis-eruptiva-perstans-a-rare-form-of-adult-mastocytosis/ (click on Figure 1 & Figure 2 to see the picture). I have these eruptions!! They come & go and remain mostly on arms & trunk. This is confirming it more & more. Anyone else get them??
Does the type of Mast Cell Disease make a difference as far as treatment is concerned (skin vs systemic)? I plan to bombard my doctor with lots of questions, but want to make sure I understand as much as possible to ask the questions I need to!! Are blood or urine tests enough to get an ‘official’ diagnosis? I’m planning to bump up the ZZ combo before I go see her so I can have some ‘proof’ to hopefully get a good discussion.
PrettytiredParticipantOf course! I will wait for ‘official’ dosing until I see my doctor in June.
Does the generic work ok too? Or do we need to stick with the name brands (this stuff is pricey! but I’ll pay it to be better!)?
PrettytiredParticipantI don’t have this particular issue, but I’ve read that stretchy, velvety skin is common in EDS. I did develop stretch marks but it was during rapid weight gain so I expected it. Sorry I’m not more help, maybe someone else here is experiencing this issue. You said you had some saliva cortisol testing done, what all hormones were checked? And make sure you get copies of the reports. Experience has shown me that they often call to say ‘your labs are normal’, when in fact they aren’t. Also, have you been diagnosed with EDS, or anything? Or still trying to fit the pieces together?
I do, however, have other skin issues. Over the last 2 years, I’ve noticed my skin aging rather quickly… more wrinkles and almost a ‘shine’ to my skin that I never had. I’m only 28, fyi. I’ve read that a hormone imbalance, particulary DHEA, can cause accelerated aging. I am low in DHEA, but became worse (fatigue & faaaast weight gain) after starting it so my doctor stopped it. I also have poor wound healing (but not the wide scarring typical with EDS).
PrettytiredParticipantWow. Thanks! Finally some answers, I can’t wait to get some knowledgable doctors on board with me (probably easier said than done).
PrettytiredParticipantDr. Diana, what are your thoughts on taking hydrochloric acid to increase stomach acidity. Maybe I’m misunderstanding (or not researching enough), but doesn’t low stomach acid cause high acid levels elsewhere? So, by increasing stomach acid with hydrochloric acid, we could raise alkalinity throughout the rest of the body?
From http://www.annlouise.com/blog/2011/07/14/hydrochloric-acid-your-alkaline-ace-in-the-hole/ (not a journal, but maybe a good jumping off point): “The right amount of HCl in the stomach triggers the pancreas to produce large amounts of alkalinizing bicarbonates that signal pancreatic enzymes, which can only activate in an alkaline medium. It is also absolutely necessary for the production of the hormone cholecystokinin (CCK), which helps the gallbladder to release bile for fat emulsification. Without sufficient HCl, bile production can be hampered from doing its job because if there is not enough bile produced, fat cannot be emulsified. It’s as simple as that.”
Whatcha think?
May 25, 2012 at 10:44 am in reply to: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? #2212PrettytiredParticipantI’d have to say this is likely the biggest complaint of EDS/POTS based on the number of posts & views! This & fatigue are a close tie for me.
I’ve struggled with this for years. I began complaining to my doctor about this & daily headaches in 2000. I was told they were tension headaches and sent to a chiro. It didn’t help. Fast forward through a sports-related neck strain and 3 whiplashes (my car is certainly a target for bad drivers), and 2 falls (over a dog gate & down a flight of stairs) and it’s still here. I’ve tried PT, more chiro care, OTC meds, ergonomic workstation adjustments at work, acupuncture, steroid injections, & massage. NOTHING touches it. Except for my c-collar! Best $10 I’ve ever spent- haha.
Results? I have a little more energy today. Could it be the coffee with an extra shot of espresso? Maybe :). I think my vision is a TINY bit less blurry today. Well, it was when I woke up anyway. Hmmm… the neck pain is back and so is the blurry vision. Related? Heck yes!
Also, I think my voice is higher pitched when I’m in the collar. Anyone else? Why would that be?
PrettytiredParticipantI don’t have my images, but my eye doctor does a retina scan (it’s a huge round thing that I look in until I see a red circle. I was told it’s a 3D image of my eye). Anyway, my doctor said the vessels are ‘squiggly’ and I have a freckle on the back of the eye. We’ve been watching the freckle for about 3-4 years now and it hasn’t changed. She thought I maybe had high blood pressure or blood sugar issues because of the vessels, but my BP is fine (and glucose levels are fine ‘usually’). I’m now wondering if it’s from external communicating hydrocelphus? My vision seems to change about every 8-10 weeks. However, I go to her and my prescription stays the same for the most part. I have an astigmatism that comes & goes. She also diagnosed me with convergence insufficiency, which responds a little with eye therapy. She suspects a central disorder…
Just bought Part 2 and will get the rest when I get home tonight.
PrettytiredParticipantI have these too! Finally, I’ve found someone who has this AND it coincides with my declining health. I have some cherry angiomas (these I’ve had most of my life). These present like small red moles. They are raised and fade when pressed. I ALSO have the red dots like I’ve been poked with a red pen, these are about the size of a needle prick- very tiny and they do not fade.
I’ve been through a work-up (several times) by my hematologist. He is certain they are NOT petechia, but suggested I follow up with a dermatologist. Unrelated: He did suggest I increase my ferritin levels with iron supplements as this can cause anemia symptoms EVEN THOUGH my iron level is within range. Anyone else have this issue?
So, I went to a dermatologist. He confirmed some are cherry angiomas, but the red pin prick dots are from hormones. He said he typically only sees these in pregnant women (which I’m not/haven’t been). Interestingly enough, I do have a hormone imbalance. He didn’t have a solution and said they weren’t harmful (ok… but I don’t want red dots all over my body!!!).
I’ve had these dots for over a year now. They came on rapidly, and haven’t changed at all either. They are primarily only on my arms and upper body. I’ve also had an increase in brown moles over the last 3 years (which is when I really started feeling sick).
Telisa (PrettyTired)
-
AuthorPosts