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POTS and MCAS


leydengs
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I was wondering how many are diagnosed with POTS and MCAS?  I have had POTS since I was a kid (I'm 37 now).  I haven't been diagnosed or tested for MCAS but I'm going to ask my doctor at my next appointment in a couple days.  This last year or two have been very difficult for me.  I was tired of paying for dr visits when I get told "it's just a flare up" so I stopped going to the dr but this "flare up" isn't getting better.  I take care of 2 kids by myself so I need to get this figured out.  Here is what I'm experiencing on top of my "normal" POTS issues.

1. Beau lines across my nails. Dents are so deep they cause my nails to crack.  My thumbs are really bad but they are starting on my pointer and middle fingers as well.
2. Constant pain in my legs.  Keeps me up at night (my muscle enzyme test always come back high in the past when tested)
3. My hair is falling out and breaking off so badly, mostly on the left front side.  I take hair vitamins but they do nothing.
4. My eyes water and burn like crazy, I always put my freezing cold hands on them to make them feel better and usually I have to lie down for a bit for them to stop.
5. My nose runs CONSTANTLY!  I go through 1 roll of toilet paper in 2 days just from blowing my nose and dabbing my eyes.  Heat and exercise make this so much worse
6. I have these white patches, skin discoloration, all over my chest and upper back.  In the summer it is really bad and looks like I had a really bad sunburn that is peeling.  Nothing is actually peeling but it's a similar discoloration.

7. Bloor sugar issues at night if I eat any sugar.  I break out in a sweat, become super shaky

8. During workouts I become so short of breath I have to yawn constantly because it feels like my throat closes and I cant great a breath through (I have this throughout the day but so much worse when working out or doing things around the house), my HR is all over the place (POTS), my nose runs even worse, I get chest pains and the burning feeling goes into my neck, after I finish a set of 8 or so reps I get so dizzy I hold onto something, my vision goes black, lose my balance and ears fill up (POTS)

I would appreciate any ideas or suggestions.  I'm getting so frustrated.

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The nail thing suggests arthritis. Hair falling out sounds like thyroid. Nose running and tears happened to me. The truth is that I don't know what is happening to you. When it was me with my nails, I had a positive ANA which turned out to be Rheumatoid Arthritis. The hair turned out to be Hashimoto's Thyroiditis. The Rheumatologists said the runny nose etc was my immune system activating and put me on Claretin every day. It helped. Like you, I always wondered about MCAS, but it didn't seem bad enough to be MCAS, so I dropped it.

I hope you find answers. Maybe you can rule out some of the stuff I just mentioned.

Kim 

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Thank you both for your responses, I appreciate it!!  I see my dr in 2 days so I'll let you know.  I was diagnosed with Autoimmune Thyroiditis 8 years ago after having my daughter.  The Endocrinologist said it wasn't enough to put me on meds but they did for a bit to see if it helped (it didn't) and then said I was fine and didn't need them anymore (after a few checkups).  I will be sure to ask about these.  

I was also diagnosed with Fibro and every time my dr checks the points to see if I'm flaring I jump badly with every place he pushes, not one spot isn't extremely painful.. He always says that I'm flaring and I say "Dr. I've been "flaring" for 2 or 3 years now!"  I'm not convinced it's fibro.

Thanks again!

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