Hi,
I know this is a weird title but this is the question, I am dx with neuromuscular disease and have UCTD along with a longggg list of other things, but I get and am having right now this weird cold feeling like there is a stream of cold water running through a vein or something on my left side above the breast. Now it is not all the time, but have been getting every day for about a week again. I just wondered if it had something to do with the neuropathy or neuromuscuar stuff going on. I have never mentioned it to a doctor because it does not hurt, but it is a very weird sensation. Really I am not a nut or a hypochondriac, but thought if anyone would have a answer it would be here.
Thank you,
susie

Well no you're not a nut. You probably should mention it to a dr, even if it doesn't hurt. I don't really have an answer for you since I've never had that, but that must be really irritating! I hope you get an answer soon!

Good luck,
Kristie

Susie,
Did you ever figure it out? I had it all over my body. It started in my chest cavity and upper shoulders. They next day it was even in my legs. I got in the shower to see if I could settle it down. It did a little while I was in it, but returned. I also was tanning and while I was having the hot burning on some parts of my skin my whole abdomen was ice cold. I'm searching the web because I have had there vascular issues like bronchiole dilation and flushing up my neck. The doctor wants to put me on tregatrol, but with my recent blood pressure rises (OK now) and vascular issues I am nervous. Too weird. Let me know if you find anything. I'll do the same.
Jerie

Susie,
I also wanted to tell you I have CRPS/RSD in case that might be something you want to check out and see if it is close to your issues.

Hi Jerie, thank you so much for making me feel like I am not alone. It was like nobody knew what I was talking about. I also get the weird hot flushing fever types of flushes. Once my whole body turned as red as a tomatoe at work, thought it was a reaction to a med, but I think it was all the stuff going on with me. I do have raynauds disease also, along with a list an arm long, lol. I am going to a neurology specialist in neuromuscular problems end of this month and this question about the weird cold feeling is on the list.

Jerie, have you ever had the feeling that your scalp is burning, that is the new thing I am having for about two weeks. I should probley go to the neurologist, here but you know in three weeks I will be at the specialists, so do not know what to do. I will certainly let you know what I find out and please I would be so interested if you find out anything too.
Susie

Hi, Susie-
I'm new here and have a lot of neurological stuff going on, too. I haven't had that feeling in my chest but do get it on the back of my legs a lot. You're right, it's weird.
My neuro just nodded when I told him about it years ago, so I guess that's the extent of his diagnosis regarding the feeling. Since then things have worsened for me neurologically and I smile when I get that feeling now. It reminds me of 'better days' when I could feel back there!
Because your icy feeling is in your chest, I'd meniton it. There probably isn't anything they can do about it but I'd tell him/her.

I've been on Tegretol for decades for epilepsy, it didn't stop anything related to neuropathy. Lyrica and Neurontin are supposed to help but when you look up the side affects they're enough to scare the snot out of you!
I have a right hand tremor now that I believe is from the Neurontin, it took about 15 years to get it but I have it. Thank goodness it comes and goes.

I also have a new neurologist, he said there are 4 new meds coming out soon that sound very good. He also mentioned that Tegretol is considered an older drug, meaning I'm getting off it. I hope a new one will help me lose weight!
I'd ask your neuro to consider a newer drug, if he says no, I'd consider a new neuro! Seriously. You don't want someone that's not up to snuff on what's going on.
There they are, my thoughts. I don't know what they're worth but there they are!

Hi Revsma,
thank you for answering my post. I am on a old anti seizure med, carbamazepine, I was put on this one because it does not make you gain weight like the other ones. My neurolgist asked me and named all the drugs and told me side affects of each and asked me which one I would like to try. I also do not to gain anymore weight. I cannot move well, so hard to lose. I was always someone who never sat down. WOW this is the hardest part of the whole thing.
I am also happy, to have someone understand that cold weird feeling,
it is like it is running thru your veins or arteries. I am going to a speciaist end of this month in chicago, and it is on my list to mention to him so we will see. It seems so minor, but who knows right?
Thanks again for your input
susie

Hi Susie. I get the same exact feeling in the same spot. I dont have any medical issues that I know of. If you've found out what it is yet or when you find out, please give an update. Would really like to know what it is. Thanks.

Jennifer

Hi

I was searching for this subject on the net when i found your forum and this thread.

Over the last week or two i have been aware of what feels like cold water going down my oesphagus and now i feel it trickling elsewhere in my chest area - not sure if its circulation or digestion or neurological - it's just a very strange sensation - it's as if i've drunk cold water on a hot day and am aware of the cold liquid going down inside me. I note it seems to happen about 30 mins or so after i've had a drink of cold water.

I'm female 46 years old - no specific known health problems (although heart and cancer issues run in the family).

Anyone got any ideas yet what this is?

Cheers
Sue x