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338416 tn?1420045702

Circulation issues and MS

Well, as some of you guys may remember, I had a blood clot in my leg last October.  This was right behind my right knee, which is the knee with all the problems - weakness, numbness. I also have phlebitis in my left leg.  I also have Reynaud's, apparently since 2009.

Well, I hadn't been taking my Betaseron, because I'd read some anecdotal evidence that indicated there was a connection between blood clots, reynaud's, and Betaseron.  I asked my neuro about this, and she read me the riot act.  She told me there was lots of evidence that Betaseron would help me, and no real connection between Betaseron and blood clots.  So I promised her I'd start taking it again!

But something she mentioned interested me - that there seems to be a link between MS and circulation problems.  Many people with MS have some sort of circulation problem.  I wonder if CCSVI is more of the same.  It sounds like the autonomic functions of our bodies are being disrupted by the neurodegenerative process.  In other words, whatever our body uses to control how our blood flows in our bodies is part of the CNS.  Interesting, huh?

So if you have a circulation problem, feel free to post it here - I want to hear about it.  And if you've ever been in a study for CCSVI, I'd like to hear about that too.
14 Responses
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338416 tn?1420045702
Hey, Carol - I think the numbness and tingling are just another symptom of dysfunction in the legs.  We have a lot of nerves that really get ignored, because we don't know enough about bodily functions.  I just heard the other day that the stomach has lots of neurons - scientists call it the 'second brain.'

http://www.scientificamerican.com/article.cfm?id=gut-second-brain

No wonder MS causes so much problems with our digestion and excretion!  Sheesh.

Hey, got some good news today!  Just had a doppler ultrasound yesterday, and my blood clot is apparently all gone.  I've been very good, taking warfarin and keeping my leg elevated.  I still have problems with swelling of that leg, as well as poor circulation in both legs.  Maybe, like Mary, I'm always going to have a problem with circulation.  

After reading that cool article about the 2nd brain in our stomach (the 'enteric nervous system') I wonder if there's a similar system dealing with our circulation.  There's the brainstem, of course, which deals with autonomic functions like breathing and heart rate, but what about the network of veins and arteries?  There's got to be nerves connected to that system as well.  What controls them?  Does it come from the spine?  

Anyway, I've been fascinated by this.  I'd love to see the guys at UTSW do some research on it.  Maybe I can suggest it to them next time I have an appointment.
Helpful - 0
559187 tn?1330782856
Sho, it is so good to see your post.  Perfect timing with your question and response to Jen as I have just finished up with the treatments that were prescribed by the vascular surgeon.

The doctor did an ultrasound of both legs a few weeks ago.  The veins were so dilated at the upper thigh and reflux significant that he didn't want me to wait any longer than a week to get in for venous ablation.  Right leg was much worse than the left and that married up with my symptoms being worse in that leg from the very beginning.  It was an obvious diagnosis of venous insufficiency according to the doctor.  

I wish I could tell you that my symptoms have really improved, but that will not be apparent for another week or so.  The only downside of this is that I got an infection from the procedure done on my not-so-bad leg and am trying to get through that.  But one thing I can say despite feeling ill and sore is that my feet haven't been getting ice cold.

Oh and by the way...The doctor told me that his practice is ready to start doing CCSVI.  They have a special ultrasound machine coming in a few weeks and woould love me to be their first patient to be tested to see if I am a candidate.  

I was talking to Elaine (Craig's wife) the other day about this and she told me that when someone has venous insufficiency in their extremeties that it would be plausable that there could be insufficiency in the neck veins as well.  We'll see if that is the case for me later this month.  I will consider CCSVI if I am a candidate for it, but after getting this infection I am a bit leary to do any more invasive procedures for awhile.

Anyway, that is the update.  This is an excellent discussion and thanks to Jen for bringing it up.

Julie
Helpful - 0
199882 tn?1310184542
Ok call me slow... so are you saying that the numbness, tingling, and swelling are due to poor circulation?  This is a constant for me that never goes away... Not always the swelling but I do have it a lot of the time... The tingling and numbness are a constant with me...

If I'm getting this right should I go to my doctor and get it checked out?  I've always had this problem since the onset of my symptoms... My doctor has never told me that it was due to circulation issues... He always told me it was just another symptom of the MS...

Someone let me know so I don't like have a blood clot kill me during the night or something...

Thanks ya'll,
Carol
Helpful - 0
333672 tn?1273792789
Someone pointed this thread out to me due to the CCSVI connection and I am very belatedly throwing in my two cents. I do have cold hands. feet, and lower legs, and a neuro did tell me that cold hands, etc. are common in MS and that this is caused by dysfunction in the parts of the brain that are supposed to communicate with the parasympathetic nervous system and control the blood flow.

I don't have problems with clots, thankfully. However, according to one of my MRI reports, my "right vertebral artery is tortuous and effaces the right anterior medulla." I'm not sure exactly what that means, but it doesn't sound good. The neuro told me not to worry--just take baby aspirin when I get old.

What does seem to be wrong with my veins, though (other than apparently malfunctioning jugular valves) is that they are incredibly hard to poke. I am experimenting with monthly pulsed steroids and the worst part of it is enduring the nurses trying to get the needle to go in. I had a horrible time in the FTY720 trial, too. They drew blood every three months and that rarely went well. Once it went so badly, they sent me to the specialist blood drawing area because the person doing the blood draw for the trial couldn't stand to poke me again.

I have been given various explanations for this. My veins are scarred (even the ones that had never been poked before?) My veins roll. My veins spasm when they're touched. I've been told this happens a lot with people with MS (because they have so much pain!? This was from one of the more scattered nurses I've ever met). That it's a problem in people with fair skin.

Does anyone else have this problem with veins hating needles?

And Julie, did anything come of your endovascular evaluation?

sho
Helpful - 0
1045086 tn?1332126422
Hey Sidestep, I don't know if what you describe has any connection to MS but it does have a name.  The lacey appearing pattern that intensities when you're cold could be something called Livdeo Reticularis.  I believe it is caused by dilation or spasms of the blood vessels (or some combination of the two).  

Some types of lupus are known to cause problems with the circulation and (especially) the clotting mechanisms of the blood.  I think the Livdeo Reticularis is sometimes seen in people with Lupus.

There are many factors that can increase our chances of developing a blood clot.  All of us need to be careful about drawing quick cause and effect conclusions about what may cause a clotting problem.  Some types of lupus may increase clotting risk but I don't think there is a recognized risk with MS or Betaseron therapy other than the general cautions that the more immobile we are, the more likely we are to develop clots.  MS can definitely decrease mobility at times!

Jen, I've noticed my lower legs swell from time to time.  In the past it has always been the right leg much worse than the left but with the last flare my left leg has been the one to balloon up in size.  The spongy tissue swelling lasts for weeks with very little relief from water pills or elevation.  It will then spontaneously return to normal when it may or may not swell up when as I'm on my feet a lot.  My BP and heart rate don't seem to change a bit during the swollen times either.

I'm with Shell.  No more excuses to not take your DMD.  It adds a lot of risk to disease progression and less-than-total effectiveness to an expensive treatment.  Please find a routine that helps you remember.  It's like making sure those BC Pills get down when we want to avoid pregnancy.  We have to find the way that works for us.

Hope this makes sense.  It's late and I'm tired but I got started and committed to finish no matter what.

Maryzzzzzzzzzzzzz
Helpful - 0
338416 tn?1420045702
Yup, you should have heard the outraged lecture that my neuro gave me!  Not to worry - I took my shot Wednesday, and again today.  Really, it's just remembering to take them that's the problem.

Helpful - 0
1658667 tn?1310091382
(still un-dx) Interesting theory Jen.

I have circulation issues. Purple feet started this year with burning feet pain. Red hands for a long time.

Ankle swelling. Hand swelling when exercising. Had pulmonary embolism at 26 after surgery (probably the cause).

Also have the one side freezing cold and the other hot like JJ. This happened with my first "episode" when I was 26...right at the same time so that is very curious to me.

I get red patches on backs of arms and a mottled look on legs. I would love to see if there is a connection.
Helpful - 0
198419 tn?1360242356
Hey Jensy,

You'd best listen to your doc, lol Get your fanny back on those shots, woman! (((Hugs)))

I don't know about the theory you pose, but I'd sure like to see if Shoshin has any thoughts in this regard.
-Shell
Helpful - 0
338416 tn?1420045702
My very first experience with poor circulation was when my shoulder was having so much pain.  It swelled up - probably because I was putting so much heat and pressure on it from the pain.  I ended up with a visible vein from my neck to my shoulder.  

The next time, my left leg swelled up and was in the worst pain, and I ended up with phlebitis.  My back was also really sore.

All this was pre-diagnosis.  The last circulation problem was the blood clot in my leg, of course.  But I think my other two problems - the left leg and the shoulder - are also related to the lesion activity in my spine.  

I've asked my vascular doctor about this, and he seems to think they're not related.  But with lesions in my spine, I have to wonder!
Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
I've been told I had poor circulation for ever (feels like for ever lol) i didn't understand what that really meant but it was a very common explanation given for the tingles or numbness in my hands and feet. Though it wasn't until I started getting the "OMG YOUR FEET ARE PURPLE!!?" reaction instead of "i've got poor circulation too" which sort of told me that what I thought was pretty normal, maybe wasn't.

I affectionetly named my feet B1 and B2 (not bananas in pajamas lol) because they were mottley shades of Blue-ish purple. My hands are often different colours too, not as standoutish as my feet, white patches and deep red finger tips. It looks like two different situations but both my hands and feet are always icy cold to the touch.

Its been this way for a number or years but last year i started getting bulging veins around my ancles and hands, picky finger vein bulging out so much I couldn't bend it. What was really strange was that i can see the veins rappidly filling up and bulging out, from laying down to standing, my arms ached like that feeling you get after you whack your funny bone. Everyone kept saying "it sounds like varicos veins but I dont understand your arms" gosh I did a lot of research trying to work out if it was connected to MS, CCSVI, vascular etc The main problem was that it didn't entirely make sense to anyone!

I then started blowing veins, little sky blue blobs would apear in weird places, the top of my hand between the fingers, under the arch of my foot, one side of an ancle, many really strange places to get bruises. I took lots of pictures to prove everything i was talking about because as we all know when we want to show anything, it usually doesn't cooperate and apear lol just to make you look like an idiot.

My pictures got attention where my words didn't, I was refered to a vascular specialist, coincidently running a large research project on the MS & CCSVI connection, officially i'm weird cause even the specialist hadn't seen my thing before. A few thousand dollars later, ultra sounds over my entire body, from neck to tipy toes and everywhere in between and there is absolutely NO structural or abnormal explanation for why this is happening!

At the end of this expedition, the only conclusion left was my brain was doing it, the how and why are still unanswered questions but me thinks its all down to those peski little lesions!

Cheers........JJ
Helpful - 0
738075 tn?1330575844
Wow!  Well, I'm glad I've quit the Betaseron.  I quit because of depression, and some really scary ideations.  

I, too, have had DVT in my R leg.  I never want to go through that again.  Thank goodness I didn't get Pulmonary Embolism on top of it all....
Helpful - 0
1475492 tn?1332884167
Jens,

I am not sure what my circulation issues are. I know from a very young age I have been "mottled" a lot. It is not uncommon for you to see my a pattern on my skin that looks like veins but isn't. This frequently shows on my arms and legs.

I've always felt my feet and hands are colder than most but last Fall, I really struggled with my right side circulation. My right hand and leg would get so cold it would change colors and, yes, sometimes the tips of my fingers would turn bright red. It was really really strange to have ONE side totally freezing and the other fine. It look and felt like I stuck one side of my body in an ice bucket. I do not know if it was actually Raynaud's. Maybe a very mild case of it. I still have this when I get cold or stressed but not as bad since last Fall.

Helpful - 0
1182479 tn?1273372414
Hi

I do believe that your doctor may be wrong about the connections between blood clots and Betaseron

I got a blood clot in my left leg from the groin to the ankle and that was 2 weeks after I started Betaseron,

My primary thinks there is a connection between the two, my old neuro does not,
i an now on Warfarin (not sure how to spell it) for the clot, and had a filter put in my groin to stop it from breaking up and going to the heart, lungs, etc,
I need to do more research on the connections, so far i have found nothing, but seems weird that the blood clot came along not long after starting the betaseron,

I have been off Betaseron now for some time, but still having problems with the clot

Tyler
Helpful - 0
559187 tn?1330782856
I definitely have circulation problems all you have to do is take one look at my legs and see it.  I

I finally scheduled an appointment with an endovascular doctor to get an evaluation - tomorrow.  I don't want to wait till a blood clot happens when I know the possibility is definitely there just waiting to happen.  

If you are interested, I'll keep you and anyone else updated on how this turns out.  This is an interesting subject and I hope others will chime in soon.

Julie
Helpful - 0
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