Aa
veins dont function normally- i am weird lol
Hey guys and dolls,
I've not long got back from my appointment with the vein specialist, so 1 test down and 2 more to go. I took with me photos of the vein's in my left arm fully engorged, pinky finger vein bulging out like a marble, hand pictures of before and after. Also had pictures of my feet, great Raynaud's pics of purple, white and blue and then normal feet looking ones. A few of the veins engorged on each ankle and no where else on my legs and one of another blown vein under my foot. Its obvious that there isn't any swollen limbs but the veins are rediculas looking and huge.
My MS sx started years ago but the vein thingy only started at mid to end of summer earlier this year, the vein engorgement stuck to my left side but soon started happening in my right foot, its only been since the weather got warmer that my right arm is now doing it too. It is totally weird, doesn't follow the rules because its in my arms and just my feet (peripheral), the specialist had thought i might have explained it wrong in my original emails to him, but he saw for him self what i was talking about, the pictures helped too.
The specialist is thinking that its connected to my brain issues, he didn't expect to find any reflux or blockages or anything at all the explain my arms but tested anyway. Unremarkable, those are the findings, so thats good in a way, because there is nothing clinically wrong with the veins in my arms. Still no clinical explanation, which officially puts me into the weird catagory lol!
I took a copy of my MRI and a copy of the report, the specialist and the radiologist dont believe I could possibly have "chronic small vessle disease" due to my age and no medically connected condition to account for it, they are suspitious of the reports conclusive dx. They were quite happy to have a copy of the MRI to investigate the SVD for them selves but suspect the lesions are more likely to be MS related, the radiologist mentioned the report should of stated it was suspicious for MS but not conclusive and recommend further investigation, rather than dx chronic small vessel disease in someone my age and history. That was interesting to hear though means nothing really, just maybe something else pointing away from SVD and towards MS. The MRI is over a year old (1.5T) and the radiologist said I need another, hmmm wouldnt that mean seeing a neurologist again, not too happy about that.lol
The specialist wants to run tests next week on my feet and legs, the pulse was lower on the inside ankle than it was on the outside, noted on both which is again wrong. Then on the 16th he wants to do my jugular veins because of the resent connection with MS, then we'll go from there. Its good news but still no news. Just for the record, my arms now feel like they weigh a tonn, the pressure is over the top and to make me really weird, each time she squeezed my arm my right eye hurt, didn't tell anyone because thats really nutty ROFL.
I would like to hear if anyone is having vascular issues on top of their MS, I do know a couple of you but is this explainable at all by the lesions in my brain?
Cheers.........JJ
I've not long got back from my appointment with the vein specialist, so 1 test down and 2 more to go. I took with me photos of the vein's in my left arm fully engorged, pinky finger vein bulging out like a marble, hand pictures of before and after. Also had pictures of my feet, great Raynaud's pics of purple, white and blue and then normal feet looking ones. A few of the veins engorged on each ankle and no where else on my legs and one of another blown vein under my foot. Its obvious that there isn't any swollen limbs but the veins are rediculas looking and huge.
My MS sx started years ago but the vein thingy only started at mid to end of summer earlier this year, the vein engorgement stuck to my left side but soon started happening in my right foot, its only been since the weather got warmer that my right arm is now doing it too. It is totally weird, doesn't follow the rules because its in my arms and just my feet (peripheral), the specialist had thought i might have explained it wrong in my original emails to him, but he saw for him self what i was talking about, the pictures helped too.
The specialist is thinking that its connected to my brain issues, he didn't expect to find any reflux or blockages or anything at all the explain my arms but tested anyway. Unremarkable, those are the findings, so thats good in a way, because there is nothing clinically wrong with the veins in my arms. Still no clinical explanation, which officially puts me into the weird catagory lol!
I took a copy of my MRI and a copy of the report, the specialist and the radiologist dont believe I could possibly have "chronic small vessle disease" due to my age and no medically connected condition to account for it, they are suspitious of the reports conclusive dx. They were quite happy to have a copy of the MRI to investigate the SVD for them selves but suspect the lesions are more likely to be MS related, the radiologist mentioned the report should of stated it was suspicious for MS but not conclusive and recommend further investigation, rather than dx chronic small vessel disease in someone my age and history. That was interesting to hear though means nothing really, just maybe something else pointing away from SVD and towards MS. The MRI is over a year old (1.5T) and the radiologist said I need another, hmmm wouldnt that mean seeing a neurologist again, not too happy about that.lol
The specialist wants to run tests next week on my feet and legs, the pulse was lower on the inside ankle than it was on the outside, noted on both which is again wrong. Then on the 16th he wants to do my jugular veins because of the resent connection with MS, then we'll go from there. Its good news but still no news. Just for the record, my arms now feel like they weigh a tonn, the pressure is over the top and to make me really weird, each time she squeezed my arm my right eye hurt, didn't tell anyone because thats really nutty ROFL.
I would like to hear if anyone is having vascular issues on top of their MS, I do know a couple of you but is this explainable at all by the lesions in my brain?
Cheers.........JJ
Depends, Supermum. During my years running from specialist to specialist, one happened to be a vascular man. All the tests were run with no results. He blamed it on Raynard's. My feet and legs were like ice cubes. He told me to never allow them to get cold. I wore wool socks and leg warmers for years in summer and winter. I spent a fortune on foot warmers that slip into socks that hikers and campers use. Each foot needed two..one on top and one on the bottom with little relief..and guess what? Five year later, five months after MS diagnose and treatment, no cold feet or legs. I have no idea what has taken it away....maybe steroids.
COMMUNITY LEADER
Hi,
I do get where your coming from, problem is they can't find a problem with my heart, my blood pressure and heart sounds etc are perfectly normal. I sometimes see stars whilst i'm getting my blood pressure test done and its still comes out normal. The thoughts are that one sx isn't necessarily connected to the other, one disease causing all the problems but each sx not necessarily related to the other sx.
The stars for example are more likely due to my sight issues, optic nerve damage does cause visual stars with out any other sx, if i touch my eyes I see those stars, sitting at the computer I see stars etc etc. I dont have to tilt physically or just my head to see stars, which would be more consistent with POTs or cardio causation.
Raynaud's is something else that adds to it all, it still isn't playing by the rules, who knows this could be a hyperactive autonomatic vascular response. System rushing blood to the affected peripheral areas to warm them up and the blood is pooling because the nerves that control return flow, arn't working right. That could explain why i can feel chilled but walking on tiles and i'll leave hot wet foot prints behind. Its an autonomatic response to thermal changes, helps ward off hypothermia, and my stupid system is affected by hot and cold temps, so my thermastat is broken.
From the looks of it, the engorged veins are not from varicos, reflux valves or blockages in my arms or legs, at the end of the day, its abnormal and the usual culprits so far havent been found. The specialist has said that they may find nothing clinically wrong with any vascular structures, which i think leaves adrenal, autonomatic dysfunction and the possiblitly that a lesion in my brain or spine is causing this problem.
I dont really know at this stage, still looking for answers and just like always there probably isn't one lol Now if i was diabetic this would actually make more sense but i'm checking my blood every day and so far i'm not out of normal range and thats even when i'm feeling fatigue, so again not making sense if it was diabetes.
All I want for Christmas is a logical explanation other than lesions lol.
Cheers..........JJ
I do get where your coming from, problem is they can't find a problem with my heart, my blood pressure and heart sounds etc are perfectly normal. I sometimes see stars whilst i'm getting my blood pressure test done and its still comes out normal. The thoughts are that one sx isn't necessarily connected to the other, one disease causing all the problems but each sx not necessarily related to the other sx.
The stars for example are more likely due to my sight issues, optic nerve damage does cause visual stars with out any other sx, if i touch my eyes I see those stars, sitting at the computer I see stars etc etc. I dont have to tilt physically or just my head to see stars, which would be more consistent with POTs or cardio causation.
Raynaud's is something else that adds to it all, it still isn't playing by the rules, who knows this could be a hyperactive autonomatic vascular response. System rushing blood to the affected peripheral areas to warm them up and the blood is pooling because the nerves that control return flow, arn't working right. That could explain why i can feel chilled but walking on tiles and i'll leave hot wet foot prints behind. Its an autonomatic response to thermal changes, helps ward off hypothermia, and my stupid system is affected by hot and cold temps, so my thermastat is broken.
From the looks of it, the engorged veins are not from varicos, reflux valves or blockages in my arms or legs, at the end of the day, its abnormal and the usual culprits so far havent been found. The specialist has said that they may find nothing clinically wrong with any vascular structures, which i think leaves adrenal, autonomatic dysfunction and the possiblitly that a lesion in my brain or spine is causing this problem.
I dont really know at this stage, still looking for answers and just like always there probably isn't one lol Now if i was diabetic this would actually make more sense but i'm checking my blood every day and so far i'm not out of normal range and thats even when i'm feeling fatigue, so again not making sense if it was diabetes.
All I want for Christmas is a logical explanation other than lesions lol.
Cheers..........JJ
Woman your eyes are not causing those stars! The more you tell, the more I think you need to be seen by a 2nd ref. the bloodflow, varicose veins, etc. Not sure if this is a cardio, or another or vascular surg., or what but it's just my initial thoughts...
-shell
-shell
COMMUNITY LEADER
Morning ladies,
I now prep for any dr visit, too many times weird happens and because its too odd it gets ignored or dismissed as impossible, therefore not happening and it really really is. There is something to that saying 'a picture paints a 1000 words' lol Gosh they are ugly pic's, it was funny when they first looked at the Raynaud's picture of my feet, just thought they were oddly coloured because of a bad photo, well that was until i took off my socks and shoes lol.
If i sit up after laying down, you can actually see the veins engorging one after the other in my left arm, filling up with blood, by the time i'm standing the veins on each side of my ankle have engorged. With varicose veins heat will tend to increase vein distention and lead to more pooling of blood so that makes sense why heat makes this even more unpleasant but I dont have varicose veins in my arms, or visible ones any where, which if this was varicose you'd expect to find some evidence.
I'm not sure it's so easy to determine its not directly related to MS but logically if your autonomatic function can be affected when you have MS then why not bigger vascular issues, raynaud's is not that uncommon in MS, and that is related to over active immune response and isn't that vascular, I could be wrong there? Mind you Jen i do think its a pretty big coincidence that a week after starting interferon injections you get a blood clot, i'd be wondering too. Could be similar to Kathy's experience which was from the injection.
I've not had any injections, only thing was the LP and the bloods taken then, too many months prior though so it's unlikely, i can't rule anything in or out at this stage. This is actually what the specialist is wondering "I wonder if the way MS acts on nerves could cause the same thing? If faulty nerve signals from brain lesions could cause the same sort of temporary constriction?" Chicken or the egg, my GP is considering this a possible bi product of the muscle spasms, and mentioned the muscle spasms possibly from faulty nerve signal and MS related, uncommon maybe but back to chicken or the egg again lol.
Interesting point Shell, they were fluxumed that i have prefect blood pressure history, i've not had any tilt tests but I can get light headed, seeing stars etc a few steps after standing up or bending over to pick something up. I have to say that my heart doesn't do anything different, its not beating faster or slower, it's possibly my eye issues are cuasing the stars because they can happen sometimes no matter what i'm doing and then maybe my brain dropping me because it doesn't know where I am in space. Its the same thing that happens if I look up or close my eyes, my heart isn't involved at all then, so its all possible or it could simply be lack of blood getting to my brain. Either way its time to know whats what.
I feel like doggie do do today, not functioning as well as I was before the appointment but i think i'll come good when i've got over it and it cools down a bit, its getting hot here.
Cheers........JJ
I now prep for any dr visit, too many times weird happens and because its too odd it gets ignored or dismissed as impossible, therefore not happening and it really really is. There is something to that saying 'a picture paints a 1000 words' lol Gosh they are ugly pic's, it was funny when they first looked at the Raynaud's picture of my feet, just thought they were oddly coloured because of a bad photo, well that was until i took off my socks and shoes lol.
If i sit up after laying down, you can actually see the veins engorging one after the other in my left arm, filling up with blood, by the time i'm standing the veins on each side of my ankle have engorged. With varicose veins heat will tend to increase vein distention and lead to more pooling of blood so that makes sense why heat makes this even more unpleasant but I dont have varicose veins in my arms, or visible ones any where, which if this was varicose you'd expect to find some evidence.
I'm not sure it's so easy to determine its not directly related to MS but logically if your autonomatic function can be affected when you have MS then why not bigger vascular issues, raynaud's is not that uncommon in MS, and that is related to over active immune response and isn't that vascular, I could be wrong there? Mind you Jen i do think its a pretty big coincidence that a week after starting interferon injections you get a blood clot, i'd be wondering too. Could be similar to Kathy's experience which was from the injection.
I've not had any injections, only thing was the LP and the bloods taken then, too many months prior though so it's unlikely, i can't rule anything in or out at this stage. This is actually what the specialist is wondering "I wonder if the way MS acts on nerves could cause the same thing? If faulty nerve signals from brain lesions could cause the same sort of temporary constriction?" Chicken or the egg, my GP is considering this a possible bi product of the muscle spasms, and mentioned the muscle spasms possibly from faulty nerve signal and MS related, uncommon maybe but back to chicken or the egg again lol.
Interesting point Shell, they were fluxumed that i have prefect blood pressure history, i've not had any tilt tests but I can get light headed, seeing stars etc a few steps after standing up or bending over to pick something up. I have to say that my heart doesn't do anything different, its not beating faster or slower, it's possibly my eye issues are cuasing the stars because they can happen sometimes no matter what i'm doing and then maybe my brain dropping me because it doesn't know where I am in space. Its the same thing that happens if I look up or close my eyes, my heart isn't involved at all then, so its all possible or it could simply be lack of blood getting to my brain. Either way its time to know whats what.
I feel like doggie do do today, not functioning as well as I was before the appointment but i think i'll come good when i've got over it and it cools down a bit, its getting hot here.
Cheers........JJ
I have phlebitis in my left leg, which looks pretty ugly. I just had a blood clot in my right leg. I asked my vascular guy if this was related to my MS. He said no. I do have to wonder though - the blood clot happened a week after I started interferons.
JJ,
Welcome to the world of officially weird, lol. Sorry you're going through this, but pleased that you found a good specialist that looks committed to figuring things out.
When I was reading your post, it reminded me of an odd reaction I had when I was giving myself an Avonex injection in my thigh muscle one night. It hurt, and then all the blood vessels on the outside of my thigh swelled way up; looked really peculiar. Scared me, actually. My roommate got an icepack and insisted I lie flat, and eventually my leg returned to normal.
I called my neurologist's office and they didn't understand; wish I'd had a camera handy when it happened.
Then I saw my primary care doctor, described what had happened She said that I most likely had hit a nerve or blood vessel, which caused things to constrict, causing a backup in blood flow, causing the veins to swell.
I wonder if the way MS acts on nerves could cause the same thing? If faulty nerve signals from brain lesions could cause the same sort of temporary constriction?
Just a thought...
Best of luck with the specialist, testing, and finding answers.
Kathy
Welcome to the world of officially weird, lol. Sorry you're going through this, but pleased that you found a good specialist that looks committed to figuring things out.
When I was reading your post, it reminded me of an odd reaction I had when I was giving myself an Avonex injection in my thigh muscle one night. It hurt, and then all the blood vessels on the outside of my thigh swelled way up; looked really peculiar. Scared me, actually. My roommate got an icepack and insisted I lie flat, and eventually my leg returned to normal.
I called my neurologist's office and they didn't understand; wish I'd had a camera handy when it happened.
Then I saw my primary care doctor, described what had happened She said that I most likely had hit a nerve or blood vessel, which caused things to constrict, causing a backup in blood flow, causing the veins to swell.
I wonder if the way MS acts on nerves could cause the same thing? If faulty nerve signals from brain lesions could cause the same sort of temporary constriction?
Just a thought...
Best of luck with the specialist, testing, and finding answers.
Kathy
Dang, sounds painful, JJ!
Look at you all prepped up w/pics and all! yay! They helped, no doubt. This team seems very willing to get to the bottom of this vascular vs. MS or both issue. I couldn't be happier to hear about the time they are putting into dissecting the imaging for themselves, etc.
I'm doubtful you'll have to go back to the neuro right now for re-imaging. Sounds as if the specialist is all over it.
You tell them nxt time those "weird" things happen. i.e., squeezingt he arm and eye hurting. Sounds like blood flow and pressure to me, but what the heck do I know.
This is good news, gal.
Cheers!
-Shell
Look at you all prepped up w/pics and all! yay! They helped, no doubt. This team seems very willing to get to the bottom of this vascular vs. MS or both issue. I couldn't be happier to hear about the time they are putting into dissecting the imaging for themselves, etc.
I'm doubtful you'll have to go back to the neuro right now for re-imaging. Sounds as if the specialist is all over it.
You tell them nxt time those "weird" things happen. i.e., squeezingt he arm and eye hurting. Sounds like blood flow and pressure to me, but what the heck do I know.
This is good news, gal.
Cheers!
-Shell
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