Heavy legs

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Heavy legs

Postby Rosegirl » Fri Sep 09, 2011 8:28 am

What a perfect description -- heavy legs. My right feels like it's got a five pound bag of sugar tied to it. My left has a 50 pound water balloon that sloshes and makes each step unpredictable.

That's my only symptom.

Is there anyone else like me?
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Re: Heavy legs

Postby dania » Fri Sep 09, 2011 10:09 am

Yes. mine are swollen. I have problem flexing my one good ankle because of this. Legs feel like they weigh a ton.
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Re: Heavy legs

Postby Ali888 » Fri Sep 09, 2011 10:12 am

Although it is not my only problem, I certainly can relate to "heavy legs".
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Re: Heavy legs

Postby gauchito » Fri Sep 09, 2011 1:24 pm

Rosegirl: also my only symptom that allows me to stand but prevents me from walking. Sometimes I feel that everything is in place (muscles, nerves,etc) but there is a missing factor that needs to be found to recover full mobility. Any idea or suggestion?
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Re: Heavy legs

Postby Rosegirl » Fri Sep 09, 2011 4:22 pm

OK, Gauchito, how about this one. Over the last six years, I've had sudden, complete remissions that last for anywhere from 30 seconds to a couple minutes. My muscles and balance worked perfectly. How about you?

After viewing images from my venogram, my neurologist (head of MS for a major teaching hospital) said that I don't have MS -- more than 20 years after that diagnosis.

It's been almost five months since my second venogram that opened five blockages that were 70 -95 percent. There was no change with my walking or gait until the four month mark. Now, instead of changing like a wire with a short -- either on or off completely -- it's more like a dimmer switch that sometimes gets a little power.
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Re: Heavy legs

Postby MegansMom » Fri Sep 09, 2011 4:56 pm

Just go to the YouTube videos and put in "CCSVI before and after" and watch many with "heavy legs". The angioplasty helps improve many. Not all, but many.
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My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Re: Heavy legs

Postby blossom » Fri Sep 09, 2011 8:16 pm

heavy legs and arms are a complaint of other circulatory diseases.

i have it legs and arms. the heat makes it worse like most.

in the 90's when i went to the cleveland clinic looking for answers i asked them if they could do a good check up on my circulation. the dr. asked me what med. school i went to to think i needed that. i told the school of being in tune with my body. the check up was worthless and so was the cocky dr.

then low and behold along comes ccsvi ccvbp and turns out the circulation has a tad to do with the symptoms they call ms. i hope soon they can check and fix all our veins somehow-expecially the spinal veins. am i hopeing for too much?
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Re: Heavy legs

Postby 1eye » Fri Sep 09, 2011 8:46 pm

OK, Gauchito, how about this one. Over the last six years, I've had sudden, complete remissions that last for anywhere from 30 seconds to a couple minutes. My muscles and balance worked perfectly. How about you?

I used to have those! I used to call them my moments of physical lucidity. I had one once in front of a physiotherapist who had never seen me lift my left foot. I raised it to right-knee level. She couldn't believe it. It was gone by the time I got home. Haven't had one in years.
"Try - Just A Little Bit Harder" - Janis Joplin
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'MS' is over - if you want it
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Re: Heavy legs

Postby Rosegirl » Sat Sep 10, 2011 6:06 am

Oh, 1eye, at last, someone else with the same experience of very short complete remissions! Mine have happened years apart, and NEVER when there was anyone else to witness it.

I am considering having a third procedure with someone who uses IVUS. That "short in the wire" might just come from a flap that sits within a vein and is connected ALMOST completely to the vein walls. So maybe there's just enough room so that it can be moved aside as a catheter enters, so it just isn't found with regular imaging. I imagine that this nasty little flap works like a funnel to stop most of the blood. Another part of my theory is to wonder whether this "funnel" has the open end up toward the blood flow so it catches most of it and slows it down, or is it upside down with the narrow end up so that it shields most of the blood from going through.

During the second venogram, at one point I could instantly feel my legs stiffen up, but it didn't occur to me to say something at the time as this can happen when I'm laying down. Maybe the catheter was at the exact point of the problem and I failed to tell the doctor. Rats!
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Re: Heavy legs

Postby gauchito » Sat Sep 10, 2011 8:47 am

You see. Many,many people experiences same picture: muscles contracting and relaxing arbitrarily, uncontrolled and disorganized. Good news is that muscles contract and relax which is their main function. Bad news is that they do not team-play. That is perhaps why I sometimes feel qualified musicians with high quality instruments are there but they sound horribly. We might be overcoming a missing factor (circulatory or others beyond CCSVI) bothering our CNS. It should be time to find it. I do not know whether this is wishful thinking: Once the Orchestra Director wakes up we will certainly enjoy the 9th !!
There has to be a Zamboni in Neurology! I hope so.
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Re: Heavy legs

Postby 1eye » Mon Sep 12, 2011 9:40 am

There is more to this than we are making out. The remissions I was talking about were not complete. They were only remissions of my muscular disability. But they were very complete as far as that one muscle was concerned. This phenomenon mean, to me, that I had not lost all myelin, or lost the neuron completely, but what was stopping me from lifting that foot was temporary and could be dramatically reversed - without drugs. Maybe a vein had come temporarily unkinked. I don't know. The damage may now be more permanent, due to atrophy of the muscle itself, But the power had largely returned, along with the control. This is an important thing to know about our condition, especially for those less progressed.

WHAT HAD CHANGED? WHY DID IT HAPPEN? WHY DID IT STOP?

It was sudden, like the onset of the disease was sudden. It was dramatic, like the onset was dramatic (like angioplasty?). It was like a switch (or a faucet, for those who prefer plumbing) turning on, and then off again. I attribute it to the absence or presence of either oxygen, or fuel, or both. I do not attribute it to the shorting of wires, or sudden opening and closing of connections. It certainly was not due to sudden growth of bacteria, or viruses, and sudden destruction of same. It was mechanical. And it showed the problem could be fixed, and fixed more completely than I suspected. I think it would be foolish to ignore this possibility, and the fact it has happened to other people is exciting.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Re: Heavy legs

Postby gauchito » Tue Sep 13, 2011 7:14 am

1eye: Adding on your splendid characterization; On individual basis muscles seem to work. In my case i.e. streching reflex (spasm)in my left leg is so poweful that one would rarely say that there is a problem at all. An expert (we) would inmediately realize that it is not functional though when opposed movement (relaxing) is difficult/imposible at need. If I really wanted to strecht my left leg voluntarily
I would do the same and expect same results as my body does on its own.
There must be something inside that recruits violins when we need the piano and viceversa. 1eye: as you said something else needs to be fixed. It seems far today but it is perhaps closer than expected.
Nowadays when Roger Waters is playing in Argentina it might be appropriate to borrow a piece of his poetry:"there must have been a door there in The Wall when I came in"
Let's continue to search the door and fight !
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Re: Heavy legs

Postby Luvsadonut » Tue Sep 13, 2011 1:47 pm

I judge how my M.S is progressing by determining the stiffness/heaviness of my legs. I was diagnosed 12 years ago and I dont think Ive had any relapses since diagnosis, only gradual worsening of mobility due to stiffness of the legs. Although people dont know I have M.S until I tell them I can only walk about 1/2 mile before my legs are too stiff/heavy to continue. I have other symptoms but they are all pretty easy to live with in comparison to the legs. Generally if my lower back is painful/tight my legs will be heavy/stiff, also, if Ive had a few drinks my legs are heavier/stiffer. Yoga and stretching helps a little.
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Re: Heavy legs

Postby Rompers » Fri Sep 16, 2011 8:46 am

I was diagnosed in 1999 RR, and between that time and the fall of 2010 (SP by then) I had three separate instances, where after sitting straight up, with feet on the floor (at theatre) I arose to have a nearer normal gait (my right leg being the problem, heavy and uncooperative) ...but that ability (all late in the evening) would be gone :( the next morning each time.

Following the W5 Report, these three instances convinced me that I would be a good candidate for angioplasty. I chose Dr. Sclafani, who found and treated me in May this year for a 50% blockage in my LIJ and narrowings in the RIJ and azygous. I have thankfully, had many small improvements :) ...but not so much with my walking as I had hoped.

However, between the angio and using Incline Bed Therapy (started at 3" in July and currently at 4") ...during August I have experienced [b]2[/b] more - OMG I can walk - in a nearer normal fashion after two, over an hour car rides, over two consecutive weekends, and now again last night! I arose from our sofa to find a more stable gait, ...I could lift my right leg! (but gone again :( this morning) Clearly there is something else going on, and I do believe it is postural and in my neck. (but I have never had pain - and it is just all so odd - and why only late at night?...)
Procedure by DrS 5/3/11 SI
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Re: Heavy legs

Postby Cece » Fri Sep 16, 2011 2:38 pm

Rompers wrote:I was diagnosed in 1999 RR, and between that time and the fall of 2010 (SP by then) I had three separate instances, where after sitting straight up, with feet on the floor (at theatre) I arose to have a nearer normal gait (my right leg being the problem, heavy and uncooperative) ...but that ability (all late in the evening) would be gone :( the next morning each time.

Following the W5 Report, these three instances convinced me that I would be a good candidate for angioplasty. I chose Dr. Sclafani, who found and treated me in May this year for a 50% blockage in my LIJ and narrowings in the RIJ and azygous. I have thankfully, had many small improvements :) ...but not so much with my walking as I had hoped.

However, between the angio and using Incline Bed Therapy (started at 3" in July and currently at 4") ...during August I have experienced 2 more - OMG I can walk - in a nearer normal fashion after two, over an hour car rides, over two consecutive weekends, and now again last night! I arose from our sofa to find a more stable gait, ...I could lift my right leg! (but gone again :( this morning) Clearly there is something else going on, and I do believe it is postural and in my neck. (but I have never had pain - and it is just all so odd - and why only late at night?...)

It's interesting that this happened three months after angioplasty. I saw new improvements in May, after my February angioplasty; gradual improvements could be the result of neurological healing.
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