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Dr. DianaKeymaster
Hi Momcat7, It sounds like everyone’s advice here is excellent! I was just going to throw in that if you can’t tolerate Zyrtec, but are responding to antihistamines, I would talk to your doctor about starting Gastrocrom (a mast cell stabilizer). The better we can clear our gut of mast cells (or keep them from degranulating), the better absorption we’ll have. And Drats, apparently, we can show “normal” levels of magnesium in our blood, but intracellularly, we are still low, so the docs suggest magnesium supplements, no matter what our blood tests show. :ohh:
Dr. DianaKeymasterHi. Did you see the video I made about hypermobile EDS? I describe a way I use to pop my hips back in place. It’s not my IT band, although I can slide that around my hip bone painlessly (and it freaks out my hubby!). I use a rubber ball. I lie on the floor on my back, knees bent. I let my knees fall gently down to the floor. Then as I bring them closer together (feet still on the floor), I put in the ball and squeeze it with my knees. POP! (and a little bit out “Ouch” and “thank goodness”), it pops back. I hope that helps a bit! ๐
Dr. DianaKeymasterHi Mother 1991, Wow, have you been through the testing! Your bloodwork should certainly reveal even more pieces of your puzzle. From what I can tell from my reading and talking to other mast cell patients, it is VERY difficult to diagnose mast cell, so with symptoms (like your rashes and GI issues), they just treat it. You will know in a couple of days if you are headed down the right track, and in a couple of weeks, you should notice a BIG difference. I like this website, and be sure to print out the “Patient Experience” letter: http://mastocytosis.ca/ . In that letter, they explain how it’s all related. You may want to ask your doctors if a trial of Diamox could be considered. As you probably know from this site, I’ve learned that most of us have a bit too much pressure on our brains from birth, and that may start some of the cascade of symptoms that we endure. Please keep us posted, OK? ๐
Dr. DianaKeymasterHi Beth, I’m so sorry that you and your daughter are going through this. One mom to another, it sucks. Now having said that, may I throw out a few thoughts for you to consider and chat with your doctors about?
First, the ocular (eye) pressure has nothing to do with the intracranial pressure. So you can relax there.
Two, I agree about your daughter’s subarachnoid space EXCEPT in the space above her cerebellum (do you see that space above the hind brain?). That area makes me wonder if it could be trapped with fluid, pushing down her cerebellum and adding to the crowding of her brain stem area. CERTAINLY before any invasive procedure, I can’t believe there would be a doctor out there who wouldn’t be willing to try Diamox. If it lifted that area of her brain and took out some of the fluid in the cisterns around her brain stem, she may be home free, or drastically improved. It does worry me about the changing vision when she moves her head. I was to the point, though, that I felt like I was passing out when I moved my head (although I wasn’t). It was horrible. I could tell an immediate difference with Diamox, but it took weeks to months to get the full benefit. Things just continued to improve.
Finally the mast cell stuff – again, the beginning treatment is fairly benign — especially compared to Chiari surgery, neck fusion, etc. Again, two days of double dose Zyrtec/Zantac (ask your doctor first) started to turn us around (my son and I). Two weeks — even better. Two months – even better. We are now going to start the Gastrocrom (by prescription). If you go to http://mastocytosis.ca/ and look at the “Patient Experience” letter, it will explain how treatment even without testing is working well for so many of us. It appears that the tests for it are very lacking (and too stringent). That will change.
So that’s my personal 2 cents. My son and I were headed for neck fusions and brain shunts, but I knew they were missing something. We were both triggered by a virus, so I knew it couldn’t all be anatomical.If you get some relief with medical management, great. If not, then surgery will always be an option. I just like to think of it as a LAST option… I hope this helps some.
Big hug,Dr. DianaKeymasterHi Mother1991, I had a thought. Do you know if you have mast cell disease? I’m on treatment for that, and if the mast cells are in your GI tract, you will show IBS-type issues. This week, I was also a bad girl and pigged out on cupcakes 3 days in a row (I know. Bad, but they were a gift – How could I not eat them?). Well, I ALSO developed a systemic YEAST infection in my GI tract. I had the white tongue, feeling of bloating, etc.
I had that one other time, so I knew what to do, but talk about bad nutrient absorption! Do you think you may have either of these conditions?
๐Dr. DianaKeymasterThis happens sometimes, but not always, to me. (And more on my stomach and chest than anywhere else.) It was really noticeable when I was dealing with chronic hives (for which no cause was ever found)–I would scratch my arm and swell up a bit. I take claritin and singulair now and just generally have less allergy stuff going on. (Though I was trying to exercise yesterday and got really itchy. So crossing fingers that it’s not starting up again.)
I am having a hard time finding information about mast cell disease, aside from a few sources that all say the same basic things and veterinary med sources!
Check out: http://www.mastocytosis.ca/ Hope it helps!
Dr. DianaKeymasterHi “Burning” — if a doc says you have something “like EDS” it usually means you have EDS, but they don’t feel qualified to diagnose it! Did you check out the videos on the types of EDS I made for this site? They may help.
Wow, your symptoms certainly align with mast cell disease, don’t you think? One problem with some centers for mast cell disease is they are using the old criteria for “mastocytosis” and are missing about half of us! Here’s a website with some great info. The “Patient Experience letter” is worth printing out for your docs: http://www.mastocytosis.ca/ I hope it helps!
Please keep us posted, and thee are a lot of wonderful folks on this site who can help you. Big hug,Dr. DianaKeymasterHormone link? Yes, indeedy. It will be in Part 2 of my theory. Meanwhile, try to stay on top of those mast cells! ๐
Dr. DianaKeymasterHi MGC – Gail, Did you ever try the Chillow? It keeps your pillow cool. I just got mine, but haven’t tried it yet!
Dr. DianaKeymasterHi mother1991, I had to chime in on the Tempurpedic mattress. Everytime I get into bed, I think “I love this mattress”! ๐ I sprang for the adjustable bed, too. I got it when my hip was subluxated but no one figured out what was going on, so sleep was hard to come by. I would wake up every time I rolled over. But with the Tempurpedic, I didn’t need to roll over! The other benefit was that my husband could be doing cartwheels on his side of the bed and I wouldn’t feel a thing. I will NEVER again take a good night’s rest for granted. FOR SURE! ๐
Dr. DianaKeymasterSome had problems increasing their Vit D when they were taking D2. Switching to D3 helped.
I think the low D3 and the Mast Cell problems indicate our Immune Sys is out of balance. The Mast Cell mediators can be very inflammatory. The question is why the imbalance?? Hopefully, I will find that answer one of these days. ๐
I agree that our immune systems are low. Did you know, though, that people with mast cell disorders have abnormal mast cells? They don’t know when to stop growing (not unlike cancer), and their shape isn’t quite right. Apparently, some have abnormal KIT receptors, too. So it may be more than an imbalance issue. The mediators are VERY inflammatory. It DOES make me wonder if that is why we need so much Vitamin D3… Thanks for your thoughts. ๐
Dr. DianaKeymasterGosh, do you think a dermatologist would know? It seems more like general medicine… I know my little white dots are poor zinc absorption, the longitudinal ridging is likely poor nutrient absorption overall, but the red ends I read may be kidney issues? yeeks.
Dr. DianaKeymasterMy son and I have EDS III. We both have very low Vit D. He takes supplements fine. I have had a very hard time with Vit D supplements. I have severe cardiac “craziness” ..palpitations, pains, breathing trouble and overall feeling of having taken a bucket full of amphetamines whenever I take anything over 3000 units. My reaction alone makes me suspect an absorption problem. At first I eliminated all additives etc and tried Vit D drops I still found that I felt lousy with anything over 1000 u and felt crisis level/ go into ER awful with anything over 3000. What kind of Vit d etc. made no difference for me. I think the connection has to be there…
Absolutely. and then we have to worry about the electrolyte balance with potassium, calcium, and magnesium. Getting those out of wack can make the heart craziness go into overdrive (been there!). It sounds like you are listening to your body, which is one of the best things we can do if a cardiologist is not willing to live with us for a while (eeks. Imagine the bill!). ๐
Dr. DianaKeymasterI belong to a POTS support group as well. All that have been tested in this group have found their D3 is low. I’m not sure why??
Gail
Wow, Gail, was everyone able to bring it up? It took us a while, but we did it. Do you think this indicates the chronic inflammation we have?
Dr. DianaKeymasterHi MGC, Wow! What a find! I will be spending some time with this article FOR SURE. I agree with everyone here. There must be a connection between our hormones and our connective tissue disease. We all eventually suffer from “endocrinology” gone wild, and although my Dexa bone scans and cholesterol have always looked good in the past, now that I have mast cell disease extraordinaire, I wonder what kind of havoc it has caused on those conditions…
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