« Sent: Thursday, August 22, 2019 11:51 PM
To: firstname.lastname@example.org <email@example.com>
Subject: breath of fresh air/my hero
I would like to take the time to tell you how GRATEFUL I am to you for continually blogging about MS.
I was diagnosed in 2015 with "MS" by MRI (brain, cspine and tspine) showing lesions "consistent with demylenation". My first girl was about 6months old. I had (what I would call) my frist (life altering) flare approximately 1 year ago (my 2nd daughter was 16mo old).
I first found your blog when researching CCSVI and other non-mainstream treatments after watching the film Living Proof.
When I read the first paper I found about the central vein sign and the idea of the pathophysiology of MS being vascular, I cried and cried. It made SO MUCH SENSE. Answers to questions my (MULTIPLE) neurologist(s) could NOT answer.
I searched again a few months ago to see if Dr. Terry Wahls had venoplasty procedure and there was your blog again with an OUTSTANDING post.
LOOOOOOOOONG story short, I found you again today when I clicked on the bookmark I must have made (at my last visit) to see if you've still been writing.
HA! have you been writing.
GIRL, you are my hero.
I read your post from 8/19/19. Brought me to tears AGAIN. I was literally having this conversation with my girlfriends 2 weeks ago.
Many of the things I imagined I would write after having venoplasty myself in Dec 2018, are right there on your blog (as well as Joan Beal's blog).
When I grow up (i'm currently 38) I would like to be you.
In your January 21, 2015 post, you eluded to a paper you were writing.
I have dreams about getting accepted into a PhD program for my thesis on The Mother and MS: Why we get "better" and then have a flare.
But seriously, why do women get "better" during their 2nd trimester of pregnancy? THEIR BLOOD VOLUME DOUBLES?!?! Duh. It's a scientific fact.
I started this email to you before I started searching for said paper.
I will look once I send this to you.
Longer story even longer.
Many of my symptoms that that disappeared after the procedure in Dec have slowly returned (I ended up with DVTs in BOTH of my IJVs).
I'm heading to Poland (https://ccsvi-clinic.com/en/about-clinic) Sept 7 to have a more comprehensive look at my venous system. They will do some blood work to look at bacteria/viral illnesses too.
Anyway, I felt I had to reach out to you. I have done LOTS and LOTS of reading on all the topics you have posted about over the years but very little writing. I am interested in talking further with you about how I can help at all.
Who is Christina Willman?
In her own words.
« I am not a doctor. I am a Physician Assistant by training (Masters Degree in Physician Assistant studies). Are you familiar with the profession at all? In the US we are now grouped into what is called Advanced Practice Provider's along with Nurse Practitioners (RNs who have a masters degree in nursing).
Anyway, I...can have a DEA license to prescribe medication. I've worked in the orthopedic surgery specialty for 13 years.
Although I've spent A LOT of time researching MS since my official diagnosis is 2015, and now vascular topics, I definitely have to admit I don't know a lot about neuro and vascular stuff.
Once I heard about a possible link of MS to vascular, I've been on a rampage to understand more.
Getting back to the medicine.
Venous smooth muscle is thinner in the the vessel wall than in an artery, which is why the artery is thicker and more rigid (can hold a stent better, interesting point). »
Back to Me. Christina’s healing approach is ideal. She analyzes her own symptoms, she reads and reads with an open mind, does not succumb to dogma, is pro-active (the earlier one stops the MS process, the more likely the recovery) and seeks expert advice and feedback every step of the way. One of her original ideas which could serve MSers very well.
« Another interesting thing I thought you might find interesting.
Might be interesting for MSers to talk to their neurologist or primary care doctor.
I have been prescribing Flomax for my dad for over a year so he can urinate better. It works on the prostate but also relaxes smooth muscle to improve urine flow.
One day I got to thinking, hmmm maybe I should try Flomax myself.....
Well, I went to see my primary care doctor (who is awesome and knows I'm off the reservation and he'll try things I suggest as I've researched most things to death) and asked him about it (really just a vasodilator in general).
He wasn't so sure about trying flomax but said he would be up for trying a different vasodilator.
Amlodipineis a calcium channel blocker used for angina (chest pain caused by constriction of the heart vessels). It relaxes smooth muscle by blocking calcium channels.
Boom. Winner. It helps the heaviness in my legs and back as well as my overall fatigue! He prescribed me 2.5mg to take daily. A couple times I've taken 2 pills (so 5mg) and it's AWESOME! I'm going to ask him if I can start 5mg/day since the adult dose is 5-10mg daily. The negative effects are dizziness and hypotension (drop in blood pressure).
Anyway, I thought you might find it to be another interesting topic to look into. »
Me again : I did ask my MD about prescribing Amlodipine, though I wasn’t surprised by her response. I came to see the MD because I had injured my arm (turns out it was broken). I had taken a mild relaxant to sleep the evening before. Usually this weakens my legs so I resolved to be very cautious the next morning. After beginning my toilette, I woke up falling on the edge of the bidet. This is bad, frightening news. I didn’t slip or trip, I simply blanked out. I have low blood pressure (90 over 60), did I faint ? Anyway, I am now 71 and starting just this year seem unable to judge accurately my capabilities. Apparently older people tend to fall because of the medication they take. So that sounds like me now which means I’ll never take another tranquilizer or sleeping pill. (Cannabis would probably be a good solution to relax the vascular/muscular complex which is why I occasionally take a « relaxant », but here in France it is illegal. Hmm, I could cultivate the plant in my garden ?) Anyway, my doctor pointed out that Amlodipine lowers blood pressure and I already have low blood pressure. Given the recent, unexplained fall, that sounds like a bad idea FOR ME. Christine is 38, I am 71, that’s a big difference and her MS manifested recently. Given her dynamic, intelligent approach I believe she has every reason to find effective treatments.
Again, rather than embark on a therapy without consulting an « expert », she visited an acupuncturist to know if my TENS acupressure self treatment was a good idea FOR HER.
August 27, 2019
Side note, I got a TENS unit and am hoping to see an acupuncturist soon to help with with placement of the electrodes as you describe in your blog post.
Would it be OK if I just try to put them where you describe? I have been researching the meridians on the website you recommend but don't feel super confident.
One of my first symptoms in 2013 was drop foot in my left after running which had progressed and now happens walking shorter distances, especially in the heat (however this went away after my venoplasty in 2018) so I'd really like to work on the dorsiflexor ».
So, I'm not sure if I see improvement in my symptoms because of the improved blood flow and/or there is some action on the spasms of the venous vessel, I don't know.
Which brings me to what you wrote on you blog about the vascular spasms. I don't think that was incorrect at all! I think it's a GREAT point and is another one of the things that should be studied further!
TENS: I got one on Amazon after reading (and re-reading) your posts about acupressure/acupuncture and using the TENS unit.
I saw an accupuncturist Thursday for the first time ever. He was VERY intrigued by my story and gave me a brief overview of the meridians. I used the TENS unit that night on GB 34 and used Kidney 2 (per his recommendation) as the complementary (Yin or Yang...?) he said the Kidney 1 or 2 (basically the bottom of the foot) would help "saturate" the entire leg below the knee and improve blood flow.
Me again : Christine did go to the CCSVI clinic in Poznan Poland in order to have her veins analyzed and treated. See their site.
https://ccsvi-clinic.com › ...
There was success as well as failure for Christine in the Polish clinic (where Dr Sclafani is associated.).She had undergone venoplasty the year before, December 2018. Within six weeks after that procedure symptoms which had disappeared returned when blood clots and scar tissue again obstructed the IJVs (Internal Jugular Veins). Doctors in the Poznan clinic believe the balloons were overinflated in the earlier procedure which might have damaged the vein’s muscle lining leading to formation of a blood clot. Anyway, the MDs were able to open the left IJV as well as the Azygos vein. They opened a left renal vain collapsed 78% (see Nutcracker Syndrome), inserting 2 stents to keep it open. However, they were unable to open the scarred Right IJV which remained 100% blocked. They prescribed blood thinner and baby aspirin to prevent further scarring/blood clots. She has since undergone an ultrasound to find that all their work remains patent.
She urged me to have my veins analyzed and treated at the Polish clinic. Her eperience reveals why it is VERY important that the venoplasty be well done. In particular that the IVUS (Intravenous Ultrasound) be used to correctly calibrate the size of the balloons.
The owner of the Polish Clinic recommended the Wim Hoff breathing technique to Christine. See https://youtu.be/-XTv2snc21sSee also https://youtu.be/D6EPuUdIC1E
I, on the other hand, have not and will not undergo Venoplasty for CCSVI. 1) For one thing, I am now 71 years old and don’t want to take the risk of being worse off afterwards than before. 2) I believe a Shiatsu massage put an end to my first major MS attack by opening the blood flow through the Azygos vein. This implies that the smooth muscle layer of the vein had gone into spasm to close it, the massage released the spasm to open it and that the problem wasn’t primarily due to obstruction within the vein which venoplasty could solve. Dr Owiesy’s work opened my eyes to this possibility. My azygos vein might be weakened because of obstructions, but my intuition warns me against venoplasty for now.
I do condemn the MS lobby – Neurologists and Big Pharma- for their stubborn refusal to act on the Fluid Circulation Disorder in MS. I should be able to find an MS specialist who can give me good advice on the issue, direct me to therapists, and see to it that Medical Insurance covers the relevant diagnostic tools (especially the FONAR upright cinematic MRI) and treatments. (See my August 19, 2019 post « I need a ‘Real’ Multiple Sclerosis Specialist ».) MSers themselves are increasingly taking matters into their own hands, ignoring the know nothing lobby and seeking solutions on their own, but often at unecessary expense and without an objective, disinterested guide.
I have urged Christine to write a paper about her theory that MS symptoms disappear during pregnancy as blood volume increases. (She asked to work on my paper, but this blood volume theory is HER idea, she should claim it.) She referred me to the following link.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3422383/pdf/12288_2012_Article_175.pdf
It’s obviously encouraging for me to find an intelligent, well informed MSer with whom I can work to unlock healing protocols.
Let MS researchers set their test tubes aside and begin a serious study of the CNS fluid circulation factor in MS.
Tags : CCSVI clinic Poland, venoplasty, MS Pregnancy, blood volume, Amlodipine, vasodilator, calcium channel blocker, blood thinner, Wim Hoff breathing technique, Acupressure