Hey all! I have not been on here in awhile. Life is going on and going on strong. So I'm sorry I have not been here much.
I am coming here to ask a question. I just finished two days of testing up in Nashville at the Vanderbilt Autonomic Dysfunction Clinic. Thankfully I do not have POTS or any other form of autonomic dysfunction going on. YIPPEE! However that still leaves some of my symptoms to be unexplained by MCAS. The joint issues have gotten so bad that I have days where I can't hold a pen, reach for things, carry items or walk because it is SHARP and debilitating. Pain relief meds are not very helpful for this degree of pain. Well I had an experience in the shower one day when my shoulder was hurting with this sharp pain. I didn't have much motion ability without pain. I couldn't reach my opposite shoulder to wash so I used the arm without the pain to push my elbow of the arm with the pain so I had better reaching ability to wash my shoulder. Well when I did this my hurting shoulder when "POW" and popped loudly. Guess what? That sharp pain was gone! (only for a few hours before it returned again) This gave me some insight to what may be going on with my joints? I don't think I dislocate them totally but at least partially. I know this is common in Ehler's Danlos Syndrome. There's many other similarities I have found but won't go into here. Now this next part is where I am looking for some link somewhere. This Livedo Reticularis/Purple lace like or mapping of veins on my legs and arms. The autonomic doctor saw it (it is so obvious and hidious looking) and she agreed that it is a vascular issue. She suggested I see a rheumatologist for autoimmune workup. Well I've had two autoimmune workups in the past two years and they have found nothing. I don't know if other MCAS'ers experience this lace like purple vein patterns on the legs and arms. If so then I would think that perhaps this could fall under MCAS. If so my meds may need to be changed up. I think they do anyway. But I need to know if there are other issues affecting me outside of MCAS that may need to be addressed and will possibly help me overall. If they are addressed and then maybe my MCAS med's won't need much adjusting. I believe there are two ways to look at this. One-MCAS in many cases is the ROOT of other issues so if said person is on a proper regiment of MCAS meds then some of the other issues may benefit. Two-If another issue/disorder is involved separately from MCAS but symptoms overlap of the two (or three or whatever number) disorders involved that changing the MCAS meds may not be helpful and the other disorder may need separate treatment. GOSH am I making sense here? Well this is why I am asking if others with some form of Mast Cell disorder have this vascular issue with the purple lace like vein pattern and if so has proper mast cell medication been beneficial with this.
When I was tested/diagnosed with MCAS one of my elevated mediators was Heparin. It was 3 times higher then normal. So I wonder if this could be a contributing factor to the vascular issue.
ANY input here would be greatly appreciated.
Thanks all. I look forward to your replies  

Kim

So you quit taking all your meds??? What made you decide to do that?