Holly at Stanford

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

Postby Sharon » Fri Jun 12, 2009 1:37 pm

Holly, please excuse the "hijack" but I wanted to respond to Cheer.

Cheer, months ago when you came out with your paper, I mentioned to you that I thought my family's history of vascular issues had something to do with the MS. The pieces to the puzzle are getting closer together - maybe just another slight turn and they will fit. My mother, who really was not an ill person (she lived to be 97), was at one time diagnosed with vasculitis. She had lost her eyesight in one eye and was treated with high doses of prednisone. I remember that her blood sedimentation rate was high and the doctor was trying to bring it down. She eventually regained her eyesight (ON?-hmm), and her sedimentation rate was lowered but it never got to what was deemed normal. The doctor told us not to worry, her rate was normal for her. She was never tested for MS - it was never considered. Whether she had MS or not, is not an issue now - the fact that for years she had blood/vascular problems makes me think there is a genetic link; especially since I have a brother with MS.


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Postby peekaboo » Fri Jun 12, 2009 5:20 pm

hi jack me anytime,,,sharing info is more important :D
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Postby Sharon » Fri Jun 12, 2009 7:32 pm

Thanks Holly!

Talked with Angela today about follow-up. I will PM you about schedule.

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Postby CureOrBust » Sat Jun 13, 2009 6:34 am

cheerleader wrote:It seems that our first four Stanford patients need more coumadin than the "average" patient, who only needs 5mg. to get the blood thin enough for stent patency.

We need to get hematologists involved in this research. I'll talk to Dr. Dake about it when we go back in July.
I don't know exactly what one is, however, maybe Dr Dake should speak with a Phlebologist? The next presentation involving this theory is at a Phlebologist conference. Dr Simka appears to be heavily involved with this research, and is also part of that next presentation.
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Postby mrhodes40 » Sat Jun 13, 2009 8:21 am

I take 7mg every day. But we already knew I had coagulation issues ahead of time. I know Dr Dake has talked with my chronic disease specialist GP who is the person who has been following me for some years now.

Her perspecitve is that cryptic intracellular germs cause the coagulopathies in people with chronic illness and there is reason for that; if a person has toxic shock the kinds of coagulopathies seen in people with chronic illness that we identified in me (high thrombin high fibrin) are the same type. My thrombin is actually over a thousand usually, and normal in lab parameters at my lab's scale is under 200.

Now I am going to tell you something wierd.........I mean REALLY wierd...

My RA is so quiet it is almost painless, and I have been eating a lot of diary food which I know from 18 years of experience with RA that I usually end up taking myself firmly in hand and swearing off yoghurt forever. I tis incredibly puzzling. I laid awake last night wondering if the really unclotting blood plays a role in that. it is the only systemic thing we have changed......... :?: :?:

Off topic for everyone else but me but wierd huh?
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Sharon » Sat Jun 13, 2009 9:06 am

Marie -

Blood-Clotting Protein Linked to Rheumatoid Arthritis
Research shows that fibrin, a protein normally involved in blood clotting, also plays an important role in the inflammatory response and development of rheumatoid arthritis

Fibrin deposits are a prominent feature of arthritic joints, and the protein appears to be a link between systems that control inflammation and bleeding within joints, according to a study funded by the Arthritis Foundation and published in the Journal of Clinical Investigation. Lead author Jay Degen, PhD, and his colleagues explain that in arthritic joints, the meshlike matrices formed by fibrin to create blood clots may control local activity of inflammatory cells as well as support inappropriate tissue reorganization.
The study suggests that inflammatory disease is driven by the inflammatory cells within fibrin matrices through a specific protein in the plasma membrane called aMB2. If that is so, developing medications that can stop the interaction between fibrin and aMB2 might help treat RA as well as many other inflammatory diseases, such as multiple sclerosis, says Degen, a researcher in developmental biology at Cincinnati Children’s Hospital.


found here http://tinyurl.com/m7yqpy

Coumadin = less fibrin = less interaction with aMB2 (whatever that is :?: )

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Postby peekaboo » Sun Jun 14, 2009 3:35 pm

I have noticed that my gums are more sensitive...i might be aggressively attacking them by flossing more diligently...my brushing techniques suck...
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Postby peekaboo » Thu Jun 18, 2009 3:24 pm

Well today reached 85 F and i'm doing OK.. it is the highest temp so far from being back from Stanford....normally 85 would be intolerant...
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Postby Sharon » Thu Jun 18, 2009 3:42 pm

This is great news Holly! For someone who lives in Arizona you have to be excited.

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Postby mrhodes40 » Thu Jun 18, 2009 4:48 pm

Fab new Holly!! Sharon thanks for the link that is good and right on for me! perfect.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Loobie » Thu Jun 18, 2009 7:08 pm

Man, that is heartening to hear. Tomorrow it's 'supposed' to be the hottest day of the year. It's supposed to be like 92 deg. F and very humid. I'm looking forward to that like going in for a prostate exam. That is excellent to hear. I echo Sharon's comments, living in Ariz. you must feel really good about that little reprive!!
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Postby peekaboo » Wed Jul 01, 2009 8:18 am

4 Weeks Now

Status of the ms body...My stiff as a board spasms are still the same...some days better than others but I have great difficulty in transfering because I cant bend at the waist very well when my legs are jutting straight out. ARGHHH

MS hug does not feel as tight as it was but the sensation is still there big time. I am still heat intolerant MS vs Menopause Mid 80's ok if a fan is blowing.

Stents - I can still feel them both the left jug and azygos. no pain but annoyance,

I believe my ms body is "damaged" so much that it will take time to see/feel changes/healing....Most of the time i feel clear headed. I sleep fairly well at night except when Mom natures calls and i just pee myself in my pullups...but i fall back asleep again

I check for Lhermittes almost everyday. this too has been a constant companion. I know longer feel electricity down my legs, i do feel mild elec thru my arms. Why don't i feel it down my legs? could it be my nerves are shot or what ever causes it is healing? Recently I have been taking 1000mcg of B12 I heard B12 deficiency can cause the Lhermittes. And B12 deficiency is common w/MS folks.

One thing that is wierd is that i am getting twitches back in the legs which they stopped along time ago when i just go into straight spasticity. could this be a sign of nerve repair?

I'm keeping the faith and good things will happen :!: AS Dr D said I was the worst person he saw to date and it is true I have the worst symptoms so far from TIMS. Wheel chair bound etc my guess EDSS is 7 + Thats what you get w/PPMS and a cracker jacks :)
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Postby Loobie » Wed Jul 01, 2009 9:14 am

Hang in there Holly. I am praying for you on a daily basis. Your high EDSS I would imagine will result in longer times to fix things if they can be. I know you must think about that. However, that twitching sounds like a good sign if your legs were 'dead sticks' in terms of that type of activity one would guess? I don't know, but that's my guess and my hope anyway. Keep that fan blowing!
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Postby cheerleader » Wed Jul 01, 2009 10:00 am

Thanks for the update, Holly. You've got an amazing attitude...I hope you know I'm a big fan of yours- for many reasons.

In the beginning, Jeff got little fasciculations- like your twitches, in areas he hadn't before...shoulder, arm, legs. Really random, infrequent. We figured it was just little nerve impulses being sent out along the new and improved neural highway, but we really have no idea. I'm hoping and praying your MS hug will calm down, and the stiffness will start to relax.

Holly, you should be proud of yourself for being so brave, undergoing an experimental treatment, and paving the way for others with PPMS. We all owe you a huge debt of gratitude- a day at a time,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Loobie » Wed Jul 01, 2009 11:03 am

cheerleader wrote:Holly, you should be proud of yourself for being so brave, undergoing an experimental treatment, and paving the way for others with PPMS. We all owe you a huge debt of gratitude- a day at a time,cheer


I resoundingly second every word of that.
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