castronovo112587 Posted January 5, 2014 Report Share Posted January 5, 2014 Hello my fellow forum members. Went to the hospital last night because I've had new numbness and tingling all over body last few days and it keeps increasing and the weird pulsating in my left foot is constant now and i could not get my blood pressure above 83/56. Of course the Dr there never heard of pots but listened to me and and was very nice not dismissive. They Gave me iv fluids and did some bloodwork. For starters he as well as every other doctor I see besides the actual carcinoid specialist thinks my carcinoid is back (I had profound flushing at hospital last night all over my body) my blood work came back with all Ok except my thyroid hormone is low (this was checked right after problems started and was normal) I know hypo or hyper thyroid can cause a vary of issues and many of the symptoms I have from day to day and in addition my mom has hypo thyroid and I know that can be genetic. As far as this sudden onset of frequent numbness and tingling and the constant pulsing in left foot and also symptoms of feeling like I have glass stuck in my fingers or toes randomly, he thinks I have somthing called raynauds syndrome which attacks your nerves and coincedentally can be caused by hypothyroidism or carcinoid(both cause hormonal imbalances) kind of comforted that my thyroid levels were low as weird as it sounds because maybe this is the answer to all of my problems and the key to helping me feel better. As fae as the carcinoid I am getting a full work up at a big cancer center at the end of the month to hopefully rule out recurrence of carcinoid. Has anyone had raynauds syndrome? I had never heard of if before. I follow up with PCP tomorrow and want him to look into guillaine barre syndrome as well since this numbness and tingling started after the onset of a bad upper respiratory infection (which I'm still not full over). Anyone on here have raynauds, gullaine barre, or thyroid issues? Your input is much appreciated thanks Quote Link to comment Share on other sites More sharing options...
E Soskis Posted January 5, 2014 Report Share Posted January 5, 2014 I have Raynaud's and it is from autoimmune dysfunction - There are many conditions that cause Raynaud's - basically, it is a nervous system dysfunction of the peripheral nerves - in my case, my fingers will suddenly lose circulation and turn white, cold, and have no feeling. I also have had this in my big toes. My legs will sometimes look purple and blotchy and they tingle like little ants crawling all over them. In fact, I occasionally reach down to "brush away" the bugs crawling on my feet and legs but, there are not any bugs! Lately, my left foot will suddenly go numb - even while I'm walking. I wouldn't think you have guillain-barre syndrome - it starts as an ascending paralysis (feet to legs, to trunk, to arms, to head...) - it does usually start after an illness like the flu or a cold or URI. There are other syndromes that begin in arms and work down from there - (descending paralysis) but, pretty rare. If you have had a nervous system cancer in the past, the damage from that may just now be showing up. It sounds like you are doing all the right things by following up with your PCP and getting back into the cancer center for more testing. I wish I could tell you what makes Raynaud's better - I just treat the symptoms - wear gloves outside in the cold and dress warmly - that does not always help however. Quote Link to comment Share on other sites More sharing options...
JenniferInOhio Posted January 5, 2014 Report Share Posted January 5, 2014 Raynauds is not that uncommon, and I would imagine many here have it. I do. It is also caused by beta blocker usage. It's all related to circulation. Quote Link to comment Share on other sites More sharing options...
castronovo112587 Posted January 5, 2014 Author Report Share Posted January 5, 2014 Do you guys get feelings of glass being stuck in your fingers or toes? My hand and feet have always been cold but lately more so then usual and especially during these episodes. Thanks for the input guys. Quote Link to comment Share on other sites More sharing options...
castronovo112587 Posted January 5, 2014 Author Report Share Posted January 5, 2014 I do not believe carcinoid is a nervous system cancer. Its a neuro endocrine tumor Quote Link to comment Share on other sites More sharing options...
Darlene Posted January 5, 2014 Report Share Posted January 5, 2014 rosey1125, does this tinging sensation inside your body feel like a burning sensation. i was in the er friday night with high heart rate, low bp, and this burning sensation inside my body. scares the heck out of me when this happens. i have POTS, but i don't think this burning sensation is a symptom of pots. i told grubb, my neurologist, the er about this systemic burning sensation but i don't think they know what it is. i think i have something going on besides pots. i was i knew what the burning was.. adrenaline surge?, nervous system misfiring? i also had these trigger point injections (steroid and lidocaine) in my shoulder and neck last month.. my face was really red for 3 or 4 days and felt like it was on fire. i ve always had the burning sensation, but not as often since having them injections. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted January 6, 2014 Report Share Posted January 6, 2014 I was diagnosed with pots in nov, raynouds in dec. sorry you had the er visit. Glad you are being cared for. Keep us posted Quote Link to comment Share on other sites More sharing options...
castronovo112587 Posted January 6, 2014 Author Report Share Posted January 6, 2014 I do get burning sensations on occasion but this isn't that just plain old numbness and tingling. The thing that has me freaked out is this series symptom of a constant pulsating and almodt movement type feeling like something is moving around inside my feet particularly my left foot and also the fact that this is happening right after a bad uri as they can trigger gullaine barre syndrome and that sounds terrifying. Quote Link to comment Share on other sites More sharing options...
castronovo112587 Posted January 6, 2014 Author Report Share Posted January 6, 2014 Thanks for all the concern guys feeling better then before but still really potty and still have the odd feelings in my feet like somthing is purring or moving around inside and random pains in feet and hands. Followed up with PCI getting tests done on hands and feet and thyroid scan plus more tests to check thyroid levels Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted January 7, 2014 Report Share Posted January 7, 2014 I have Hashimoto's. I believe that when my thyroid levels are off either too low or too high, it typically affects my POTS symptoms as well. My thyroid was fairly unstable for a number of years--my dosage had to be adjusted fairly frequently. In recent years it has burned out I guess, and my levels are stabilized by taking synthroid each day. Hope you can get your thyroid levels more stable and feel better soon Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.