TOS? Or something else. Im scared
I have hEDS, POTS and being treated for as if i am diagnosed and in the process of being tested for MCAS. I have been fighting to be heard by my PCP for the better of 9 months now. So to start i have spine issues already. I have degenerative disk disease and spinal stenosis in my neck. So i already got the nerves issues that run down my left arm into my fingers from time to time. Use to that now. Doesnt really bother me too much, more annoying. About a year and a half ago is when MCAS started flaring up, i think due to an EXTREMELY stressful time in my life. I dont have any real one event i can think of that may have caused it. My gallbladder was bad and had it removed a couple of months after this started but wasnt removed due to this. Started seeing my PCP looking for answers to these flares of bright red face, chest and ears, hot, burning, stinging. My body would feel flu like. I was so tired i could barely do anything. my joints ache. Eyes, mouth and throat were sooooo dry. My skin dried out. And the migraines that i have always had, became everyday. I mean everyday. Everything went haywire. So my PCP ran tests but really just kinda shrugged me off. In a month i was back sent me to a dermatologist bc she thought its just rosacea. I went and i tried for several months the cream the gave me. No help. Made it worse. Then another flare but this time the front of my neck was killing me. It hurt to swallow, lymph nodes or glands felt swollen. Wasnt my actual throat that hurt. I tried to explain it was my neck. That ran right beside my throat if that makes sense. I hope it does. This time i was sent for an ultrasound of my thyroid. They couldnt tell if it was inflammation or a nodule on my thyroid so went for a CT with contrast. The CT came back with everything normal except for my left internal jugular vein(IJV) was patulous near the meeting of the subclavian vein. I didnt know what that meant so when i asked my doctor, after googling, she said she believed it to be something of “my normal” body. But that is exactly where the pain bothers me. The next flare my neck hurt, as with every flare now. This time it made it hurt from my collar bone all the way up, under my chin and into my ear. My head was still having migraines! The brain fog has gotten worse and i have been having a hard time recalling words at times. Actually made the left side of my fave tingle like nerves were being bothered and my neck felt swollen. No one else can seem to feel the swollenness that i feel. Ive tried to get them to feel it but they all look at me like im nuts. Finally i was told by one of my PCPs (their are 2 in the office both of which know me very well) that i was just goin to have to get use to it and its more than likely muscular. I needed to go to a chiropractor and when i explained why i couldnt see a chiropractor, a deep tissue massage was recommended. So i saw my cardiologist the next week just as a check up and i decided maybe he would listen. While waiting that week to see him i noticed that the weakness and tingling went from my neck to across my shoulder and down my arm into my fingers. I also found a spot right under my collar bone i can push and the tingling goes straight to my fingers. Its bothersome to hold my phone. It makes it worse when i use my arms overhead to long and the tingling will go crazy. I cant look down at my cell phone for to long. Ive been working on better posture and also loosing weight(been working on that for a few months). When i saw my cardiologist he listened to everything i needed to say. And asked about imagining. I told him about the ultrasound and CT. He looked them both up and then said to me basically my left IJV was “buldging” a little more than it should form what he could understand bc the radiologist didnt really go into detail. He said he thinks i may be having some compression on my left IJV. Or maybe even some Thoracic Outlet Syndrome but said he didnt think it was TOS. He is sending me over to a vascular surgeon to be evaluated. It isnt one on any of these lists. I live in alabama and a small town but its one he likes in georgia. One that people speak highly of. Im very nervous bc i have been gaslight and argued with so much i have medical PTSD. I also dont have much support at home. Not much family. My husband hasnt been able to go with me to my doctors appointments within the last several years due to his job. So he only gets to hear what i say and i dont make a lot of sense. Im nervous im goin to get answers this time. And im more nervous they will be answers i dont want to hear. Im scared about what this could mean. Im 37…. And i have children and a husband. Im sure im leaving things out…. But i had to vent somewhere, where others may understand me. I would love to hear others stories. Please no horror stories right now. Im scared enough. I hope you are all doin well and thank you for reading!