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Hi Dr. Diana,

Thank you for your very kind reply.

Regarding Forum 411 help, I noticed that my PM to you is still in my Outbox which means you haven't opened it yet; otherwise my PM to you would have been moved to my Sentbox.

If you haven't yet done so, the next time you have a chance, click on "Private Messages" listed under "Modules" which is located in the upper left margin of every TIMS' page. You will be taken directly to your Inbox which will list all PMs sent to you. Yellow flags = PMs not yet read. White flags = PMs you have read.

Looking forward to lots of learning!

hi dr. diana, thanks for your time.

my last mri of my brain was about 2 yrs. ago. i really don't know if it would show what you want to know. but when i first got in contact with dr. flanagan i sent him the cd mri of the brain along with my full spine x-rays just in case it might mean something to him. are you two in contact or confide?

my symptoms started after a bad fall in 1990. i also was wacked hard at the base of my skull in the 70's that left me with a tingly left foot and hand. but after traction it subsided pretty much.

at this point extreme heat intolerence, very overactive bladder, r. leg and arm and hand pretty close to useless, left leg and arm hand started weakening about a yr. ago and is accelerating faster than it took the left side to get bad.my feet are very purple and cold and swell. this got much worse after breaking my r. leg a couple yrs. ago and i am pretty much full time wheelchair. i can still transfer. when i lay on my back i can move better and positioning my neck certain ways my feet warm up quickly-in fact they get hot and red. i basically gotta watch because when laying down my whole body gets too warm. i get moderate stiffness and spastic.

also ever since the fall if i tilt my head backwards in certain ways i can open my bad hand and move better. as i worsened this is not as prominent but still exist.

where i was whacked in the 70's at the base of my skull after the 1990 fall when in bed i will get a radiating pain starting at that point bad enough to wake me. again reposition my head and it lets up. that did subside after ccsvi treatment but is coming back some. my left leg is still numb from ccsvi treatment and since they have been telling me i have flow i suspect a nerve got damaged.

also, and i've noticed this happening since ccsvi treatment--when i am sitting up if my hospital bed for a few hrs. my nose and cheeks will get icey cold and if i doze off i wake up very cold then i lower and reposition i'm toasty.

i do not sweat.

my legs and feet burning sensation in muscles and will ache. my arms and hands will get like ice and be blueish then switch to red and warm sometimes like now my left hand will be like ice and the r. hand is toasty. my sitting position seems to influence this.

as i said my spine is a mess with scolosis stenosis and after yrs. of walking with a twist and now the wheelchair it is a mess.

my chiro. is trying to get things as good as we can and soon i will try nucca. hopeing it will bring relief and the other choice would be surgery to remove cervical spurs and help with the stenosis. we are waiting for the report of my recent cervical mri and my chiro. and dr. flanagan will be reviewing them.the fact that i rarely get a headache and no neck pain "which i am grateful for" kinda throws me.

i got high blood pressure-started about 4 yrs ago after some extreme stress and the wheelchair i'm also too fat.

medications-high blood pressure pill and diaretic pill
i have mthfr was told to take folic acid and asparin -after the ccsvi treatment i replaced the asparin with nattokinase prescription potassium- xanax when rarely needed

b-12 shot usually 2xa wk
vit d 3 - d-mannose and cranberry extract
cell power
b complex
magnesium
milk thistle
cayenne capsules at random
these are taken regulary and eat a lot of garlic

would you like to further correspond by pm's? or post ? thanks again.

Welcome, Dr. Diana--
great to have you here! I heard Dr. Gabbiani talk about the collagen switch from type I to type III he was finding in the jugular veins of pwCCSVI during his presentation in Bologna in '09. He mentioned that it was like what was seen in connective tissue disorders, and I remembered reading about ED and wondering if there were similarities...I think Bluesky linked our previous conversations on TIMS. Very, very interesting. My husband's sister most likely has ED (she is undiagnosed)...she has the hyper-flexible joints, soft skin which bruises, and has had several surgeries for her joints- which dislocate and are unsupported by tendons and cause her great pain.

My husband lost his peripheral vision as a kid. He has bilateral drusen...fatty deposits on his optical nerve. They typically don't cause loss of sight, but in his case, they obscured his field of vision so that he now has tunnel vision. I know these can be related to ED. Dr. Dake mentioned that he had never seen vein linings like Jeff's jugulars...he said they were sticky. I have a feeling that for some who present with CCSVI and MS, ED may well be a factor...and your information is very helpful. So glad you've joined the discussion!!
cheer/Joan

Hi Sweet Blossom,

I'm so sorry for all that you are going through. I think it would be great if Dr. Flanagan and I compared notes on your case. He'll see things through the spinal alignment issues (especially cranial) and I'll see them a bit more through the autonomic dysfunction, poor CSF circulation and damage to your brain stem.

Can I ask you a couple of questions before throwing out advice?

Did you have scoliosis prior to your accident(s)? To what do your docs attribute your scoliosis to? Have you ever been examined for Ehlers-Danlos Syndrome? Do you have digestive issues, cog fog or any difficulty breathing? Have you had an echo (of your heart), and if so, do you know what it said?

If Dr. Flanagan can either shoot me a couple of images, or answer a couple of my questions, that would be great.

Oh - I saw you were on a diuretic. Is that for the high blood pressure, or something else? Can you tell me what it is? If there are any signs that fluid is not draining from your brain well, your doctor may want to switch you to Diamox (or add Diamox). It will help with the flow issues (it crosses the blood-brain barrier) and also helps with brain (and nerve) irritation and ischemia (which I think Dr. Flanagan will agree you likely deal with.).

All of your temperature issues, not sweating, extremities getting hot, then cold are common autonomic dysfunction symptoms. I'll be curious to see if Dr. Flanagan thinks there is too much CSF in your cerebromedullary cisterns around your brainstem. If so, it can make these symptoms VERY positional. I go through that too, but sort of backwards from you! If I lay on my back, I can't stay away, on my left side, I wake up. I also get VERY hypothermic and fatigued at the same time. When I am warm again, my energy is back (sort of...) But the fact our symptoms are so positional is amazing, don't you think?

One thing you may need to discuss with your docs right away -- aspirin and diuretics are not usually a good combo. Or at least, be sure your docs are monitoring your kidney function, OK? Here's a link for you and them: http://www.ncbi.nlm.nih.gov/pubmed/18077925

You or your docs may not know the answer to this one, but did you hear if you had any injury to your brainstem (even just a "little" stroke in that area?).

There is an MD who developed autonomic dysfunction (which you have) after an accident who is on YouTube. Here she is: http://www.youtube.com/user/DysautonomiaMD

She had a couple of little strokes in her pons (part of the brainstem), and she can be a great buddy, with good advice. It also just helps to know that there are doctors out there (ahem) who grapple with similar issues.

I look forward to anything I can do to help.

And as far as PM's? Whatever you are comfortable with. I'm a big proponent of sharing info, but not at the expense of the patient's comfort level, K?

Gentle hug,

Hi Cheerleader (<3 that name),

FASCINATING info! Do you know of anything I can read about the collagen 1 to collagen 3 change? That has all of my neck hairs standing on end. Wow.

It does seem that most of us have "triggers" for many of our symptoms, and a TON of us (EDS/MS) folks, shows signs of leakier vessels after the trigger. I am working closely with a geneticist who could get pretty excited about that, too...

BTW, that is amazing about Jeff's optic nerve head drusen. It does make me wonder if the drusen was a "red herring", and the vision loss was due to something else (like the brain sitting on the optic nerve?). Hmm...

I agree with you, wholeheartedly. EDS, MS and CCSVI in many of the same people... Coincidence? I don't think so!

Jeff is blessed to have you in his corner.

FASCINATING info! Do you know of anything I can read about the collagen 1 to collagen 3 change? That has all of my neck hairs standing on end. Wow.

We've been discussing that for awhile, I don't have any links handy, but someone will turn some up!! I am hopeful that after venoplasty the collagen3 will be able to shift back to collagen1. There is so much that is not known.

Can you explain, what happens with collagen in ED? Is it abnormal to begin with or does it shift from normal to abnormal?

HappyPoet was kind enough to talk me through the quotes, images, etc.

This is a bit big, but here are my veins (or "my jugs" as my husband laughingly calls them.) My son's look almost just like them. Our azygos veins were fine. Just bad valves at the base of the right "garden hose" jugular, and a ridiculously tiny jugular on our left (the rest of the Ramen noodles are collaterals).

I'm just excited to learn how to get an image on the site!

I have an intro video on "Prettyill dot com" now, if you want to put a face to the jugs, so to speak...

Hugs to you all...

Nice jugs I recognize the skinny vein and spaghetti collaterals...Jeff's were very similar before his left side was opened up.

Here's the thread on the collagen shift from type 1 to type III being researched by Dr. Gabbiani--

http://www.thisisms.com/ftopict-11311-.html

And here is Dr. Gabbiani's abstract from this year's ISNVD conference:
http://ccsvism.xoom.it/ISNVD/Abstract-Gabbiani.pdf

INTRODUCTION
It has recently been suggested that chronic cerebrospinal venous insufficiency (CCSVI), present in at least 55% of multiple sclerosis (MS) patients, plays a role in the evolution of MS through increased venous pressure favorizing the perivenular inflammation typical of this disease. This hypothesis is supported by preliminary work reporting the
improvement of MS symptoms after venous angioplasty in patients with MS associated with CCSVI. The purpose of our study was to characterize the pathological features of CCSVI lesions in MS patients.
MATERIALS and METHODS
We have examined several venous specimens from MS patients in which CCSVI had been diagnosed. Five of these specimens were obtained from patients undergoing jugular vein reconstruction after restenosis following angioplasty and 10 additional specimens were obtained from a patient with MS and CCSVI who died for unrelated causes. Five control specimens were obtained at autopsy of patients who died for non neurological diseases. All specimens have been examined histologically by means of hematoxylin and eosin, Masson trichrome and Sirius red (with and without polarized
light) stains and by means of immunohistochemistry, using the following antibodies: 􀀁- smooth muscle (SM) actin, typical of SM cells and myofibroblasts, SM myosin heavychains, typical of SM cells and collagen type I and III

RESULTS
All specimens from CCSVI veins showed: 1) thickening and sclerosis of the adventitia, 2) a significant difference of birefringence pattern, from a green birefringence to a red birefringence (P<0.001), between veins of CCSVI patients and those of controls, suggesting a switch from collagen type I to collagen type III expression; this modulation was confirmed by means of collagen type immunohistochemistry.
CONCLUSIONS
It appears that the changes affecting CCSVI veins in MS patients concern mainly the extracellular matrix, collagen in particular. The switch in collagen type from a prevalence of type I to a prevalence of type III may be implicated in the hemodynamic changes obseved in these patients.

cheer

Cheer please check your PM's!!!

hi dr. diana, in answer -- no i did not have scolosis or any known spinal problems before the accidents. i asked the chiro. about what brought it on he said the neck area and all the fall out from that. the way i started walking and now wheelchair sitting. after the 1990 fall it was probably near10 ys. before i got any comments from massagers or anyone that my r. side of my back was higher and as time went on it worsened.

i have never been checked for eds to my knowledge--how do they check for it?

i have no digestive problems--no cog fog---my breathing was always ok no shortness of breath but this sitting my chest muscles seem to be weaker such as getting a hard cough out. but nothing i can't deal with.

i had an echo the kind they put a drug in instead of excercise to test about i'm guessing 12 yrs ago. i really can't remember the results. i assume i was ok?? but things can change. really at that time the stress levels in my life were over the roof combined with the illness a quick heart attack seemed inviteing at that time. but now is now so if i need one i will get it. i was in the hosp. emergency appendix last oct. i was too sick to remember much going in but it seems they put those sticky pads with wires on my chest???

yes, the dieuretic is used as part of treating high blood pressure it is called hct 12 mg. once a day. i have not taken asparin since i was done with palvix after ccsvi treatment. i take nattokanise--will that hurt? trying to keep possible clotting or intimal hyperplasia.

yes, it is amazing abut our sameness when it comes to positioning. no one ever seems to get what i try to explain. for sure no neuro.'s. dr. flanagan gets it my chiro. saw it and you experience it. just hope someone could fix it.

when i was first trying to figure out what was wrong my first neuro. said and other docs said the lesion on cervical was not the normal ms lesion. in fact the diag. of rsd was made first then few yrs. later a spinal tap said i might have ms but he felt sure rsd. there was a spot on the brainstem that was questionable and the neuro. kept an eye on it with frequent mri's to make sure it was not a tumor. he also said there was the possibility of it being an old injury reinjured. and a possibility that the hard fall had caused a "spinal stroke". the force of the way i fell shuttng off blood flow or fluid flow.-----after about 5 yrs. he left pitt. and the new neuro.'s when i questioned about it fluffed it off. they were not concerned but i was.my first neuro. was the only decent one i experienced. after that even though a lot of test don't jive to be ms-that's what they choose to call it.

here is food for thought--for a few yrs. now i've had an itchy spot on my back where the scolosis is bad. the caregiver said all she could see there were very little surface veins something like spider veins. she said today there ere more. asking my chiro. today if this could mean anything. he even said out on the limb but in theory when there is something wrong with a main vein collaterals form. say the agyous vein in the spine is jammed up and these collaterals are trying to form. ????

thanks for the info. did you ever have trauma injury? looking forward to where this takes us all to a better place. and a gentle hug back to you. i read that hugs are healing.

blossom wrote:...
here is food for thought--for a few yrs. now i've had an itchy spot on my back where the scolosis is bad. the caregiver said all she could see there were very little surface veins something like spider veins. she said today there ere more. asking my chiro. today if this could mean anything. he even said out on the limb but in theory when there is something wrong with a main vein collaterals form. say the agyous vein in the spine is jammed up and these collaterals are trying to form. ????

...

This leads to the issue of chronic bacterial infection -manifesting as vasculitis. Vasculitis in the tiny veins in the brain, and in the larger veins IJV, azygos, iliac, etc. Could a bacterium trigger the changes in collagen in the venule? (semi-rhetorical question)

Perhaps we can live with venous malformations like septa, webs, veering valves and such until the increasing insult from bacteria throws it over the edge into "MS". I would bet that we all have visible vasculitis such as spider veins, and the like.

I hate it when they don't put a picture on the jig-saw puzzle box and half the pieces are missing!

Johnson wrote:

blossom wrote:...
here is food for thought--for a few yrs. now i've had an itchy spot on my back where the scolosis is bad. the caregiver said all she could see there were very little surface veins something like spider veins. she said today there ere more. asking my chiro. today if this could mean anything. he even said out on the limb but in theory when there is something wrong with a main vein collaterals form. say the agyous vein in the spine is jammed up and these collaterals are trying to form. ????

...

This leads to the issue of chronic bacterial infection -manifesting as vasculitis. Vasculitis in the tiny veins in the brain, and in the larger veins IJV, azygos, iliac, etc. Could a bacterium trigger the changes in collagen in the venule? (semi-rhetorical question)

Perhaps we can live with venous malformations like septa, webs, veering valves and such until the increasing insult from bacteria throws it over the edge into "MS". I would bet that we all have visible vasculitis such as spider veins, and the like.

I hate it when they don't put a picture on the jig-saw puzzle box and half the pieces are missing!

Regarding spider veins and the like...

I have small red dots on the top of my feet that are now spreading up the calf of each leg. Cheerleader's husband, Jeff, also has these -- they have a special name which I can't remember, unfortunately. This piece of the puzzle fits perfectly for me because the small dots first appeared right around the time of my first major exacerbation (which led to RRMS diagnosis).

Just throwing this out -- are the little red dots telangiectasia? I don't know if that's what they're supposed to be called, but I wondered. Mostly because I also have tons of small red dots. This is different from petechaie and purpura, both of which I have had before, mostly when I'm sick or reacting to a med. This happened on plavix.

Johnson -- have you heard of biofilms? That dovetails perfectly with the bacterial theory. And what about boluoke (an enzyme supplement) to address fibrinolysis? I am considering these as additional missing pieces to help with the vascular hypothesis.

https://www.researchednutritionals.com/ ... ode=CBD202

Just thinking out loud here. The usual disclaimers apply -- brain full of holes, no medical degree, think for yourself, sense of humor please, etc.

Wow Dr.D,
You've given me alot to think about, not only for me but for my children...not that MS isn't always in the back of my head, as a health conerned for them. I have been diagnosed and treated for CCSVI, and sometimes wonder if they should be tested as well.
My daughter has hyperfexability of several joints, suffers from migraines and is experiencing some gastrointestinal problems.
I have resently had a bout of optic Iritis and have the HLA-B27 gene.
I look forward to following you on your web site.
Thanks again.
S

HappyPoet wrote:

Johnson wrote:

blossom wrote:...
here is food for thought--for a few yrs. now i've had an itchy spot on my back where the scolosis is bad. the caregiver said all she could see there were very little surface veins something like spider veins. she said today there ere more. asking my chiro. today if this could mean anything. he even said out on the limb but in theory when there is something wrong with a main vein collaterals form. say the agyous vein in the spine is jammed up and these collaterals are trying to form. ????

...

This leads to the issue of chronic bacterial infection -manifesting as vasculitis. Vasculitis in the tiny veins in the brain, and in the larger veins IJV, azygos, iliac, etc. Could a bacterium trigger the changes in collagen in the venule? (semi-rhetorical question)

Perhaps we can live with venous malformations like septa, webs, veering valves and such until the increasing insult from bacteria throws it over the edge into "MS". I would bet that we all have visible vasculitis such as spider veins, and the like.

I hate it when they don't put a picture on the jig-saw puzzle box and half the pieces are missing!

Regarding spider veins and the like...

I have small red dots on the top of my feet that are now spreading up the calf of each leg. Cheerleader's husband, Jeff, also has these -- they have a special name which I can't remember, unfortunately. This piece of the puzzle fits perfectly for me because the small dots first appeared right around the time of my first major exacerbation (which led to RRMS diagnosis).

If anyone can help me...what are the signifigance of these small red dots. I have these, mostly on my right leg, which is also covered in varicose veins. And I have just started getting these same dots on my right hand (last couple of months). It seems that everytime I have a problem/symptom that I think cannot be related, it comes back to some vascular issue.

I have never heard of telangiectasia before, but now I am very interested.

Thanks to anyone who can shed more light on this for me.