Godsgal

Would I see a neurologist? By the way, tearose, you are the sweetest thing! Your posts area always very kind and I appreciate that!!

I am having persistent pin/needles numbish type feelings that are not going away and it's scaring me! It lasts for hours and then I become unaware of it because I'm dealing with the kids. Then I notice it again. It's worse on my face, neck, throat....I can feel it just a bit in my hands. My husband was helping me stretch my shoulders this morning and it traveled down my arm. I don't know what to do about this!!! If I take my head and try to stretch out my neck it makes it MUCH worse. I can feel it stretching out to more places on my face and I could even feel it in my mouth this morning after I stretched my neck. SOMEBODY HELP OR ADVISE!!!

I don't live in New England.....South Florida. It's crazy hot here! You definitely don't want to be here!!! It's comforting to hear of other's numbness and it's nice to meet another numb, tingly, itchy mess! It does make me nervous. My posture is TERRIBLE. And I'm constantly hunched over. I'm sure that doesn't help me. I'm pretty sure it's related to something muscular or nerves because it gets worse if I stretch it.

Forget about them catering to any theories. A good dermatologist will know UP, cutaneous masto, etc so you don't even have to mention that to them. Thank God! Go in and tell them you want them to biopsy your skin and do a mast cell stain on it. If they need a reason, tell them you have a rare condition that is pointing to a mast cell problem being the cause. Get a doc who knows what they are doing so they pick a spot that actually has mast cells in it (if in fact you had them).

Thinking and praying for you today Lieze

I just want to add that you can have mast cell activation issues and it not be in your skin......at least I'm pretty sure that is the case. Someone else correct me if I'm wrong....

Okay...so I've been on a big rant lately about my skin biopsy because that is what has truly opened the door for me to get help with all this pots/dysautonomia stuff. There is NOTHING weird or suspicious about my skin. BUT I had a lot of the symptoms of MCAD so I decided to get it done just in case plus doctors did not buy what I was trying to say about mast cell activation being linked to POTS. Anyway, I have a friend here locally who has POTS & dysautonomia. She was bedridden 8 months. She had some MCAD symptoms.....dermatographism, used to have flushing but it stopped, sensitive to foods, headaches. I sent her to my dermatologist and he found 2 little spots on her back. One normal, one VERY HIGH with mast cells. Now she has the cutaneous masto diagnosis and is in complete shock. Just wanted to post this b/c a lot of people wonder about this and I figured I would mention it just in case. She was VERY skeptical but it came back positive. She has a negative tryptase just like me and hasn't had any other testing besides this. The doctor is Peter Wallach in Coral Springs, FL just in case anyone is near here.

Hi there....when I took 25 mg of a beta blocker my bp would be 60/40.....perhaps you could have the dose. Just call the doctor and ask if you can start taking 1/2 the dose. My blood pressure is constantly low and that low I understand is definitely sickening. You don't have to live like that!!!! The beta blocker is making it drop too low. Not worth it! I bet that half the dose would help you a lot. I was taking 12.5 for the longest and that ended up being too much for me as well. I did best on 6 1/4 mg. Yep...taking 1/4 of the dose. But I'm really small and my body did best with that amount. This POTS is definitely an experiment as to the best meds for you. And your body is letting you know this isn't the right mix. Put a call into your cardio to approve the half dose if that sounds like you want to give that chance. Then drink a glass of tepid water before you get out of bed in the morning (recommended by POTS doctor at Mayo). Not a cold glass. Tepid. Try gatorade, and V8 if you can tolerate those. Watch the sugar in the gatorade. I always like G2. Try compression stockings which help the blood pressure & heart rate. Prescription grade. Don't give up! You'll find the right meds for you. And keep searching for a doctor that understands POTS and will help you. Take care, Jared

First of all, let me say that I am a total newbie within this area of mast cell issues. But I wanted to at least comment. There are some mast cell disorder forums that you could find a lot of information through the members there. I would try offering up a similar post there. I understand she's in North Carolina. There is a Dr. Patricia Lugar at Duke in North Carolina. She wouldn't be available though until October at least b/c I just tried to call there for myself. She is a researcher and has an interest in this area. Sometimes our symptoms our so life changing and upsetting that it will prompt us to driving a distance for relief and answers. If she is in that place, perhaps Virginia or Charleston, SC would be a place she might want to go. There is a Dr. Schwartz (correct me someone else if I'm wrong) in VA and a Dr. Afrin in SC. Does she have dysautonomia or POTS did you say? Because mast cell activation can be linked to that. Thanks for being a great friend and researching for your friend!

I emailed him last night and he contacted my Dr. this morning with quite the lengthy email. I tell you, he has impressed me so very much. I can't wait to meet him in person. Plus he gave specific instructions regarding my bone marrow biopsy to be done. Great doctor so far. I am set up for Thursday to get it done. God be with me!!! I'm a little nervous. More for the results than I am the actual procedure. But I'm having faith it will come back okay.

I am set to see Dr. Afrin May 23rd. The tingling is nuts! It has lasted for days now. It feels like a strong band is wrapped around my neck...not so comforting.

let me say one thing that doesn't make it seem like the mast cell stuff is when I stretch my muscles it gets worse.....if I stretch my neck or arm the tingling/numbness spreads to my throat and face

So I started on these new meds.....40 mg pepcid and 10 mg. of claritin twice a day. Everything was going great the first day until BOOM! Big reaction....itching, breathing crazy, hot face, tingling on my whole face, throat, mouth, hands, arms. I took an extra claritin and benadryl to make it go away. Last night I was itching again like crazy, tingling mouth, the numbness started spreading across my face. I took 50 mg. of benadryl and went to bed. Well it's hit me early today and I have it now. The tingling, pins/needles, numbness, whatever is in my hands, fingers, mostly my face, throat, lips. What in the world?!? I get scared half to death like I'm having a stroke but I'm also itching and hot so I think not. But when I get this, the numbness and tingling lasts for hours and hours. In fact, I had it most of the day after I had the crazy episode the other night. does this ring a bell with anyone???? I'm thinking these new meds are not pushing my buttons very well. PLUS, I have a sinus infection. Let me say one thing that doesn't make it seem like the mast cell stuff is when I stretch my muscles it gets worse.....if I stretch my neck or arm the tingling/numbness spreads to my throat and face. If I put my head over to the left to stretch my neck, the muscles are so tight in my neck that it pulls my mouth open. And it exacerbates the tingling/numbness. I took some benadryl and the itching is gone but the tingling persists. The joints in my jaw are very sore. This started a few days ago. Surely the pepcid and claritin wouldn't do this. What could be making me have this numbness, pins/needles in my face, throat, hands, back??? I had a spine MRI a couple months ago and a nerve conduction study too. Plus the autonomic test a couple months ago. PRAYING, PRAYING, PRAYING this will look up

I did the histamine free diet. I do it perfectly to a T. And let me tell you if I sneak something in I shouldn't, I get punished big time!! Possibly, but maybe not. If you have mast cell activation disorder - it doesn't necessarily mean that you're allergic just that it activates your overactive mast cells and then you're miserable. A true allery can be life threatening. I have a true allergy to shrimp - 1/2 and I could die. But, my guess is you could be reacting to these things. There's one way to find out. Leave them all off for about a month and then slowly add one back at a time and see if you react. The only problem with this is - you may be fine one day and react another day. There is one sure solution - eliminate them completely. That's what I'm TRYING to do.

My life with this condition is so much better when I avoid things that set it off. That hot shower in the morning is definitely no good. My POTS specialist told me to drink a glass of tepid water first thing before getting out of bed. Another one of my tricks to raise my blood pressure if it's really low is to put a pinch of sea salt on my tongue, wait for it to dissolve & swallow it, and then chug a bunch of water. I don't like the taste of salt water so I like to try to swallow as much of it as I can. That helps me a bunch. Also, what does she do every morning...perhaps there is something that is making it worse. Same for at the around 5 pm time. Is there anything possibly that could be setting symptoms off for her that she does everyday? I And please feel free to contact me anytime. I'm happy to help!

I wish I knew more about EDS and skin issues. Skin issues are best to be shown to each doctor you see because they could be a symptom of so many conditions, but especially the dermatologist. I wouldn't even have my diagnosis if I had not insisted on the biopsy. Dermatologists are good to see anyway once a year to rule out skin cancer and precancerous changes so that's incentive to go to. Yeah, on being attractive. I gave up on my skin during this whole drama! Sunlight bothers me too so I'm pretty pale and shaving seems to bother me also so I'm a real gem. Skinny jeans are a hot commodity around here.

We know mast cell activation has been linked to pots so go get a skin biopsy and make sure they test it for mast cells. Call the dermatologist and make sure they are familiar before you go. I just heard from a friend with mast cell activation and she mentioned she had been hearing about the red hot ear on the mast cell forum. A lot of my stuff looks like yours by the way. But the only way to be sure is to get it tested.

You're not crazy! Take the drive and see the doctors that really know what they are talking about and can answer your questions. It's so worth it. This is a more rare condition and it requires a special doctor. I remember when I first got to the Mayo doctors that actually knew what I had it was like I was at Disney World! Please look at the symptoms on the main page here and maybe get on the dynakids website also. POTS is just a type of dysautonomia. We all have different symptoms that plague us because the autonomic nervous system covers a lot of areas. Everybody is different. And it will relieve you a lot to get the autonomic testing done for her. That will include a tilt table test. Take care and know you're not crazy. And try not to worry about her too much even though I'm sure that is next to impossible. Just do whatever you can to help her avoid things that make her ill and maybe get her some compression hose, tons of gatorade, and salt for the blood pressure. I struggle with low blood pressure and I have for a long time. All of things I mention help it a lot and just relieving that one little area makes you feel a lot better. As far as the gastric complaints, avoid large meals and lots of carbs. Junk food doesn't help a lot either even in small amounts. The more natural foods will be better for her. I have a lot of stomach symptoms and my docs think I have some delayed gastric emptying as well. I just try to eat the healthiest food possible, small meals, no junk food ever, not a lot of grains/carbs, and I make sure I drink water while I eat. Also, I avoid mixing foods that need to digest by themselves. May be hard for a young girl to do but when you get sick enough it prompts you to try different things. As far as mixing food, you can check this website out. http://www.rawfoodexplained.com/digestive-physiology-and-food-combining/food-combining-rules.html Like I said, I know that it might be hard but I started to really hate looking 4 months pregnant every time I ate, plus the pain I would feel. This has helped me a lot. Take care and praying for your daughter, Jared

I'm willing to pay a fee and help! Can we get a job description and let each of us say what we could help with. Let's delegate the jobs out!!

Well I am not smothered at all. If you are concerned or get a weird feeling about it, get a knowledgeable dermatologist to check it out! It's really quick and easy to get a biopsy. Better safe than sorry....just get one if you have insurance to cover it. As far as the kidneys, I don't know. I know that mast cells can affect organs but I HAVE NO CLUE about the kidneys and the functioning. Perhaps Mack's Mom knows about this.

Wow Lieze...I can't believe you're so small. I have read so much about gastrocom helping people that have a hard time with their food. Maybe a nutritionist could help you? I soak everything in olive oil to try to add fat to my diet. I'm down to 100.5 I used to be 108 before I got this.

Yep! Me too! I can't do most candles, any perfumes, detergents, etc. I get the weird tingling, all that stuff. I'm not a huge fan of adult benadryl because it makes me feel crazy too. BUT, I do take children's liquid benadryl 12.5 and that helps me much more than the adult stuff without the side effects. I think I recall you being pretty small Lieze so I'm sure that the adult stuff is too strong for you as it is for me too. You could also try a claritin when that happens too.

One more thing! Would it be better to be in the wheelchair at this girl's wedding or not use it and risk the ambulance being called or you being miserable? Try not to worry with the wheelchair. Take care and have fun!

Hi there....I know what you mean about the wheelchair. When I first had this come upon me in December I still felt like I could go out and do the stuff I had been doing before. But I kept getting near fainting episodes and feeling really ill over a really short outing. I finally gave in because feeling better and doing more became more important than caring about the wheelchair. I'm young and I have little ones. My friends and family had never seen me in a wheelchair either but it got to a point where I needed it! I was paranoid in the beginning about it but people are usually very accommodating to people in wheelchairs and that was nice. If anyone asks, say you faint if you stand or walk for too long. Your autonomic nervous system isn't regulated. That one gets people thinking too! I have a really lightweight one and I use my feet to push myself around (it doesn't have the wheels). I probably look ridiculous scooting myself around like that but I'm over it! There are a lot of POTSY people that use wheelchairs so please don't feel strange about it. Go to the wedding and enjoy!! Take the wheelchair out in public tonight and break yourself in a little bit. Our own preconceived notions, fears, and thoughts about wheelchairs come out when we ourselves start using them. When I first started using one, I was so paranoid people were judging me, accusing me in their minds of not needing one, or that I was some kind of invalid because I used it. Absolutely not!!!! We use it because we have a rare condition and it prevents us from being uncomfortable or having all out and out syncope. Take care and have fun at the wedding! Congratulate the bride and act like it's second nature to be in the wheelchair!

It seems like I have had this for a while and I NEVER flushed. I would get hives quite often and that was it. I moved into a house with toxic mold and that sent it all over the edge. I started flushing and then went on a histamine free diet and it subsided.