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It's interesting to note that many MS patients report low "normal" body temperatures. I've seen surveys done on some of the various MS boards, and the vast majority of patients seem to report that their body temperatures are consistently low.

I know for a fact (due to lifelong hypochondria) that my normal body temperature before my diagnosis was 98.6°. Within a year of my diagnosis, my normal body temperature dropped to about 97.3°, and my resting blood pressure dropped as well. My BP usually comes in somewhere around 90-100/60...

This also appears to be a scantily looked at aspect of the disease...

I always attributed my low temp. - I'm lucky if I hit 97 degrees, to the extensive lesions I have in the thalamus and probably hypothalamus. I don't know the real cause- they test my thyroid constantly and that is always perfectly normal.

Sandy

THIS PAPER is about DAVF, dural arteriovenous fistula. This is a venous issue in which for some unknown reason the body makes an extra blood vessel that connects an artery and a vein without going through the normal capillary bed. Usually the blood goes into smaller and smaller arteries until it gets down to the teeny tiny vessels that are nearly the same size as a single blood cell where the last oxygen is absorbed. This is the capillary bed where then the changeover from artery to vein happens and thick strong-walled arteries become thin walled veins. From there, blood in the veins is no longer actively propelled by the pulse as it makes its way back to the heart.

A DAVF skips the capillary bed and connects an artery directly to a vein. The result is a swollen tortuous vein that has a pulse pressure that does not belong there. In the spine it causes pressure on the nerve tissue cord adjacent to the vein. The result is progressive myelopathy, in other words, progressive loss of function just like MS.

It is interesting in regards to this thread because it shows that venous pressure can cause damage to the adjacent nerve tissue. In the case of DAVF it is a vein that does not belong there at all, and its pulse pressure in what would otherwise be a passive vein results in the vein becoming very stretched and swollen.

But can venous reflux, which is less pressure than the pulse pressure of a DAVF, do the same thing? Who would deny that a person with reflux laying quietly in the venous lab office is only showing the tip of the iceberg? What is that reflux like if they move the couch? Strain to go to the bathroom? Can it be, in small moments like that, far away from the doppler lab where the patients lays quietly on the bed, just as bad as the pressure in the DAVF? Periodically and for a few moments at a time?

To me it seems very likely. If you believe that reflux exists in MS patients, even in one vein, then this demands investigtaion, not argument about whether or not someone believes it 'can" happen. DAVF shows it can.

DAVF is very progressive.

It is interesting to note that in Zamboni's studies all of the PPMS patients had a very specific pattern of reflux: Pattern D (See Zamboni '08 ) The reflux is in the vertebral veins specifically as well as the deep cerebral veins. The combination of that means that there is pressure on the spinal cord specifically because of reflux in the vertebral veins in addition to the brain. In two of his studies he saw a total 19 PPMS patients. They all had this pattern, not usually the jugular reflux, though a couple also had a jugular problem in ADDITIOn to the vertebral vein thing...bummer for them.

Marc it sounds like you are being tested for DAVF with an angiogram? Maybe you could ask the referral if they would be able to see the VV's at the same time? I don't know anything about doing angiograms at all, that may be totally impossible.

We describe three patients with progressive myelopathy, in whom autopsy revealed spinal cord pathology compatible with that of venous congestive myelopathy (VCM) associated with dural arteriovenous fistula (AVF), formerly known as angiodysgenetic necrotizing myelopathy (Foix-Alajournine syndrome). In these three patients, common symptoms were gait disturbance and sensory disturbance of the extremities, and these symptoms slowly worsened. The clinical diagnoses varied and included spinal cord intramedullary tumor, cervical spondylosis and multiple sclerosis. At autopsy, all the patients showed enlarged, tortuous venous vessels on the dorsal surfaces of the spinal cord at the affected levels. In the affected spinal cord parenchyma, necrotic lesions manifested by various degrees of neuronal loss and gliosis, with increased numbers of hyalinized vessels, were evident. The presence or absence of associated spinal dural AVF could not be identified histopathologically. Even with the help of modern neurological examination methods, early and accurate clinical diagnosis of VCM is sometimes difficult. When encountering patients with progressive myelopathy, VCM, although recognized as rare, should be considered as an important differential diagnosis

.

Hi all.

I have found this article:

http://linkinghub.elsevier.com/retrieve ... 1405010530

It describes a patient with cerebral venous hypertension, who developed blindness which resolved after correcting the issue.

I am curious. Can stenoses of the internal (deep) cerebral veins be corrected by surgery? I find them to bee very deep inside the brain to have access to them. Are the PP MSers doomed, once again?

Seeing the exact location of the vertebral veins has ringed an alarm in my brain. 20 years ago, I had developed a lipoma at the right side of the root of my neck. After several test, my physicians decided that it was not malignant in nature and it would go away by itself. It did, however, the tissue under the skin feel hard and it is not just like the left side. Could this press the vein and cause stenosis?

sou

I am happy to see that research on this topic is including PPMS. I have this type.

In these three patients, common symptoms were gait disturbance and sensory disturbance of the extremities, and these symptoms slowly worsened.

most my symptoms are described above. I also have the ms hug which i believe is attributed to spinal and cervix lesions.

AS far as temps go...i hover aroung the 98.6 +/- but not significantly in my book. weather wise - I used to favor cold weather temps over hot. but lately even cooler temps are effecting me. I believe it is a circulation problem becuase I am wheel chair bound.

MY blood pressure chaneges during the day..it is high in the am and becomes normal by late am on. I believe this is normal or should I say that timing of taking temps and bp may change the results.

hi Sou

I am curious. Can stenoses of the internal (deep) cerebral veins be corrected by surgery? I find them to bee very deep inside the brain to have access to them. Are the PP MSers doomed, once again?

I think, but am not sure, that in theory correction is in the azygous vein and that relieves everything all the way up to the DCV's. I know the Vertebral vein is theoretically supposed to be helped that way. It is early for this material Dr Zamboni is presenting the data on his first set of patients treated with the liberation procedure on Monday at 11ish london time.

I do not know if he treated any PPMSers.

Honestly, the fact of the reflux is pretty well proven. he has large numbers and the doppler strips to show anyone interested enough to look on nearly 800 people. he has venograms on all the MSers too, that is also material anyone else can look at, they all had stenoses, or blockages, in the jugulars or azygous and sometimes associated veins as well. That too is something that anyone can see. It is not up for debate.

heck if they test you, they will either see these blockages or not. Period. It will not matter if thousands of MSers have it or only a handful, if you have it, you have it

assuming, that is, that the doctor you see interprets the dopplers the same way Zamboni does and feels like there is enough "abnormal" to do the actual venograms. Dr Anonymous who is doing a study even as we speak--and reproducing the Z results BTW-- says it is not easy to see the two abnormals, it is harder than it seemed like it would be to see everything that is going on with dopplers. There's a bit of an art to it. Venograms, OTOH, are more like an x-ray; a clear picture of a blockage or twist or whatever, but they have a bit of risk so they don't do them unless they have a reason to, hence the dopplers are first.

But even if you accept that the blockages are there, or even if you are tested and find them in yourself, here are 2 things NOT known:

First; Do these blockages have anything to do with the development of MS? We can suspect Yes based on the DAVF known facts; it, frankly, can't be good news to have these stenoses and reflux no matter what you think MS "is".

And secondly; if we relieve these stenoses will it relieve MS symptoms?? Will it stop progression? No one knows the answers to this yet.

This is where the research will need to go. Lots of people will need to have these venous systems assessed to see if they have these issues, then they will need to be treated to see if it helps.

Probably the answer to the question of whether surgery will relieve the pressure will be guessed at this way,
1. do the dopplers and assess the refux in the DCV's VV's etc.
2. Do the venograms and see where the actual blockages are.
3. Then do the endovascular surgery and repair the blockages.

4. Repeat the dopplers and see if the refux is gone. If it's gone, then we have proof that the surgery helped blockages. We'll know if the DCV's are no longer refluxing after repair of the azygous by dopplers before and after surgery Sou.

Then we wait......... and do MRI's. Do people progress? have relapses? do their MRI's look different over time?

And at the same time how are the dopplers looking? Have we relieved the stenosis permanently (this is not expected, veins tend to block up again, so if someone had a relapse they'd probably get a doppler right away to make sure of that angle too)

This part of it is going to take some years before we have anything definitive in large numbers to know about.

Sou said

Seeing the exact location of the vertebral veins has ringed an alarm in my brain. 20 years ago, I had developed a lipoma at the right side of the root of my neck. After several test, my physicians decided that it was not malignant in nature and it would go away by itself. It did, however, the tissue under the skin feel hard and it is not just like the left side. Could this press the vein and cause stenosis

THAT is interesting. And yes I see that it does fit this model seemingly well. If you get dopplers and the reflux is seen in the vertebral veins right on the side you had that lipoma......man. That would be interesting material.

Sou if you get this tested, be sure and report to us??

Along these lines I have vertebral vein reflux in the LEFT vertebral vein. Interestingly all my lesions are on the LEFT. The left brain guides the right side.

I have right sided weakness.

Heat vs cold

I liked heat until '03 12 years after I got sick. Now I can't take heat or cold. I also have low BP. I believe based only on people I know and nothing scientific that people do fine with heat until the degenerative angle of MS has reached a certain level. it seems like about the time people turn SPMS or just get kind of about an edss 3-4 or so they do OK with heat.

In my case I was normal looking until '03 then at my son's graduation in 101 degree heat and sun I suddenly had an obvious limp. Until then heat was my friend and we all thought I was doing great

Does that match others experience?

Exception boy here! I was VERY heat intolerant for the first 5 or so. Now the cold is worse; I flippin' hate the cold now I start shivering and teeth chattering and it takes a bit of time before I can even talk right sometimes. It feels like a damn seizure (Ok, I don't know what a seizure feels like, I'm just saying). The heat still affects me adversely, but nothing like it did in the beginning.

Wow, yeah that is totally opposite from what I thought I was noticing among my friends!

The cold though, now that I hve been sensitive to for a long time, I seize up and am stiff stiff stiff!

.

I have not stayed up with this forum, I will come back some time and catch up. I hope this post isn't too out of context. I've found some articles that I'm working through and I beleive they may relate so I'll inset them as I go. I came across this when I was looking for stuff on Apoptosis. I thought Cheerleader and Marie would especially like this.

Dr. Aoki et al. 2001 Endothelial Apoptosis Induced by Oxidative Stress Through Activation of NF-B

Ken

I know from a deep gut level feeling that CCVI is at the root of our problems. In the early part of my life cold never effected me. Until in my early 40's you certainly would not want to get into a snowball fight with me. Packing snow balls, working in the icy water fishing and farming never cold hands or feet. My hands would literally steam in the cold and wet. Before MS on the hot days I would literally spray sweat and maintain cool unless out of fluids. My head would always be cool and body warm. Now hands and feet are cold and head is hot. Have not broke a good sweat in at least 5 yrs. Seems my circulatory system cant average the body's temp. Thyroid is fine, the blood pressure of a man half my age. It takes only a fraction of a degree one way or another now and I can not walk un aided. Mostly I dislike the heat because of the other issues of double vision, brain fog, and extreme fatigue. Any suggestions. I use gel packed neck wraps and a horse spray bottle on the warm days. I sure miss a good sweat. Peace Mark