CCSVI Check-up

Five months ago*, I made my way to Albany, NY for my appointment with Dr. Mehta for my CCSVI check-up. I had a doppler scan first, which took about 25 minutes this time. As I sat in the exam room with my very amusing friend, we wiled away the hour of waiting with lots of laughter.  I was peeking out of the exam room door to see if I could sense an end to the waiting, and at the same time the doctor was turning to come in to the room. I happened to be laughing at the time, and the near collision caught us both by surprise. But to make things worse, my friend (who is a loud laugher) was bent over in a hysterical fit. So, this is how the doctor comes upon us, and let me tell you, those first few moments of the visit were awkward!!

The news was the same as it’s been for over a year. The Doppler showed open internal jugular vein on the right, and closed on the left with ‘adequate’ collateral vein drainage.Bla bla bla….”There is nothing that we can do NOW…come back if you are more symptomatic….you are looking good…see you in a few months”.

Since there is nothing that can be done, I’ve made a concerted effort to do something for my general health for the past months:

1. I have had a couple of therapeutic massages. They weren’t covered by insurance, but I think they should be.                 2. I continue to have chiropractic adjustments about once a month, down from two to four times a month.                         3. I’m being fitted for hand braces next week. After having a very painful nerve conduction study, I was told I have carpal tunnel syndrome in both hands (even though I had surgery on each years ago). I am concerned that I will not be a compliant patient in wearing them.                                                                                                                               4. I continue to eat gluten-, dairy-, corn- and soy-free. I have slip-ups and challenges with this way of eating, but things are getting easier.  The learning curve is not quite so steep.                                                                                          5. I started having acupuncture sessions and it has certainly been a fascinating experience! I hope to write on that topic, as it deserves some praise-singing for its effects and an explanation of how it works. It’s going to be fun explaining something that is so mysterious……….

*Five months away from this blog has seemed like 5 weeks. I have only thought of it now and then, and always with twinges of guilt, but now I’ve decided to make amends and come back to bloom where I’m planted for a little while longer. At least that is my plan.  🙂   Keep fighting to be well!


Looking for an Ember…

Once the morning passes into afternoon, I begin to panic. It’s just a little swell that starts as a flutter and as the half-hours pass, it progresses to a full blown pounding. All the things I haven’t done yet scroll through my mind, and the ever-increasing speed of the spin threatens to topple me from my shaky perch of dailiness. Is it because I don’t work at a paying job? Is it because I’m lazy? No, the anxiety rises up because I refuse to believe that I can’t do everything I want to do in a day. I’m more than old enough to know that doing everything isn’t possible, and yet, I won’t budge from believing it.  My husband has said that my stubbornness in things like this is what  keeps me going, but I’m not so sure it’s working to my advantage anymore.

When life shrouded me with multiple sclerosis, some things did not change. I still want to have fun, keep a clean house, make many different things, read a lot, write some, see new places, help others, love joyfully and laugh loudly. (The list is in random order, although having a clean house was at the top of the list before I added fun, and that is a sad truth that came out without the telling.) But what MS did change was my ability to focus on a task and complete it. Certainly I could never be accused of being a strong finisher of the many projects I started even before MS, but now, I am often afraid to begin anything new. The fear comes from a place I’m trying to uncover: fatigue lies there, of course, and mental cloudiness at times, but is there something else? I’d like it to reveal itself so I can take it on.

There is such empowerment that comes with a completed task, or with a personal victory of some sort. Perhaps it’s taking a solo travel excursion or doing the week’s grocery shopping alone. It could be completing the physical therapy exercises I know I should do, cooking a meal instead of having take-out, or having a heartfelt conversation that is clear, and remembered. The empowerment of these completions is like energy that feeds the furnace of beginning another. I don’t know how it works exactly, but I have felt it.

So, what happens when the things aren’t done and the furnace never gets stoked?  When the day turns to darkness and you fear looking back because all you can see are the things left undone? And, worse still, your laughter wasn’t loud and your love was anything but joyful?   For me, it is exactly when I admit that MS has thrown a bucket on my fire, and I begin the work of rekindling the embers.  Again.

Appointment with my CCSVI doctor in five days!

It’s been about eight months since I’ve made the trip down the road to see the doctor who performed my CCSVI treatment. Next week, I’ll drive to Albany and get a doppler scan of my neck and talk to him about the results. I will be surprised if all is status quo, (because I have been in a not-so-good place for a few months), and I am really hoping for some positive news about vein grafting.

A lot has changed in the CCSVI world since I saw him last, and it has gotten hard for me to keep up with everything.  I also have a lot to tell him about my latest blood tests and will be peppering him with my prepared list of questions. (When the doctor visit is out-of-town it’s even more necessary to focus and make a list!)  God bless Dr. Mehta for putting up with my many, many questions in the past; he will see that I haven’t changed in that area at least.

One of the things I will tell him is that Teva, the company that makes Copaxone, contacted me to get his name and number so they could contact him about my CCSVI treatment.  What is wrong with that???? I can’t even begin. I was on that daily injection for ten years and I stopped it 2 1/2 years ago. When I contacted them to stop calling and sending me drug info, they asked me why I stopped and I happened to mention my treatment. Well, it’s the truth and since I’m not really into all that social filtering stuff, I said it. Someone has to, so why not me?


Quotes are Insp…

“Follow the path of the unsafe, independent thinker. Expose your ideas to the dangers of controversy. Speak your mind and fear less the label of ‘crackpot’ than the stigma of conformity. And on issues that seem important to you, stand up and be counted at any cost.”

– Thomas J. Watson (1874-1956, American Businessman, founder of IBM)


It’s time to discuss poop and MS

When I was little, it seemed that my grandmother and Mimi, her sister, were always concerned about my bowel movements, and those of other family members. If you didn’t go every day, it was time for prune juice. If you were cranky, it was because you didn’t go. The seemingly constant vigilance on the bowels was annoying, embarrassing and so old country. (We used the term old country to remind them that we were in modern times now, and in America; it was a chide to forget about how things were because those things are undoubtedly wrong and very outdated.) Now that I am, by all kinds of measures, grown-up, I realize my ignorance, and even admit to asking about the bowel habits of my grandkids from time to time.

Being in the wonderful group of people with MS, I hear a lot of discussions about symptoms and bowel habits get a bit of airtime. I can’t go, I haven’t gone, Why can’t I go?  Patients get put on all kinds of protocols and are urged to eat fiber and drink lots of fluids, which is counter-intuitive when there are bladder issues.  The tendency towards constipation is affected by medications, and the lower levels of exercise or body movement of the afflicted. (Yes, afflicted is a good word to describe the person who has MS.) We’ve pretty much been told that the nerves to the intestines aren’t working properly (but why?) and to do the best we can to manage the constipation.

Sometimes there will be the opposite bowel issue–diarrhea. [Or as my husband pronounces it in his Brooklyn accent that shows up now and then , di-ah-ree-ur.]  Not very common with MS, they say; but it is often a side-effect of having chronic constipation. Again, there are no answers for why someone might get diarrhea or constipation or a combination of both (usually called irritable bowel syndrome), and there is always the suspense of when each might occur—–like a daily surprise. Then there’s the ever-dreaded fecal incontinence.  From what I’ve read, this can also be a side-effect of constipation, which alters the muscles, nerves and sphincters of the rectum and anus. [I never, ever thought I’d be writing a post with rectum or anus in it, but there you go.]

With so many bowel issues in MS, you would think that someone would researching why they happen, and try to find an answer that’s different than the unquantifiable “Because of nerve damage or lesions”.  [By the way, lesion load and placement aren’t always directly connected to symptoms experienced. No one knows why that is, either.]  The three current clinical trials for constipation and MS that are listed on http://www.clinical are drug-related. Well, one is sort of a drug—it’s actually an oral dose containing 2500 eggs of the whipworm parasite. It’s being conducted in Germany and is actively recruiting, if you are interested. [Hey, anyone with severe enough anything will try what others call desperate measures. I won’t judge you for trying!]

Which brings me to the next interesting tidbit I came across: “Accidental discovery that Fecal Microbiota Transplant (FMT) in 3 MS patients led to a reversal of the disease.” Wow, who wouldn’t want to find out what a fecal transplant was? Was this doctor a quack? And so I looked, and I read and I watched videos—all about poop. [My grandmother and Mimi would be so proud!]

Before I did, I asked myself what do I know about the colon? I know for sure that its excrement is known by many words, like feces and poop. I know that it absorbs water, salt and fat-soluble vitamins from the stuff the stomach and small intestine send down.  I know that it has, in recent times, been discovered to be part of our “second brain” (enteric nervous system) because it’s lined with tissue that contains neurons and neurotransmitters. [Remember those tummy aches when you were nervous as a kid?] I also know that the colon contains good (and sometimes bad) microscopic bacteria (microbiota) and that these bacteria are affected by medicines we take and food we eat. 

So, then, this fecal transplant? The basics are this: poop from a healthy donor gets processed and put into a patient that suffers from ulcerative colitis, or in one study, three recipients who had MS. The patients are not awake and it seems to be like undergoing a colonoscopy, but with a package of genuine goodness left behind. The theory behind its success on the patients with ulcerative colitis is that the microbiota from the healthy donor feces recolonize the sick person’s colon and all those good bacteria flourish and have a party!  This flourishing is what stops the diarrhea, or in the case of the MS patients, constipation, and apparently helps the person to regain health. There is so much to say about that! I can’t find much info yet about the MS patients in particular, but I will find the real scoop soon.

I will end this by saying that there are many stories we hear about people ‘getting better’ after they change their diets, or lessen their stress, or avoid foods they are sensitive to. Why is that, if the gut isn’t somehow involved in the health of the whole person, even the person with MS?  Right after this I’m posting a link that has a poop-load of information and I hope you read and watch.

ps  I see on the clinical trials site that a lot of research on fecal biota transplants is in motion–mostly for ulcerative colitis, inflammatory bowel disease, or infection with the bacteria C. diff. (that organism is cited as the reason for hospital patients getting severe diarrhea during their stay.) No research set for MS, but I definitely think it should be.

More than MS?

Although some snow was flying for part of the morning, spring is here. The courageous snowdrops by the door are old news and a solitary crocus and pinpoints of periwinkle tell me that we are truly moving forward in the season.

Many difficult conversations begin with a weather discussion—don’t you think that peculiar? When what needs to be said hangs heavy, waiting–until the talk about temperature, wind speed, and humidity is complete. And here is the part where my thoughts diverge: to tell what I feel or what I want to feel? My family would likely comment that I am a straight-shooter and not able to act a way that I don’t feel, so I guess my path is already worn.
Since January I have had 33 tubes of blood drawn. I guess the good things about that are: I didn’t come close to fainting, even when 16 tubes were drawn at once. Those were ordered by a rheumatologist that I had to see after having a strange thing happen to my toes. Let’s just say that there were spots, madly reddish-purple spots, with swelling and tenderness. The second good thing about having all that blood taken, is that I can say that with some swagger and elicit some great responses from an unsuspecting listener.

The kind doctor called last week, and immediately proceeded to tell me about my abnormal test results. Since my life’s objective is to FEEL BETTER (I have other objectives too, but if I can’t reach that one, then the others might be moot.), I was hoping that all those lab tests would show something that was an easy fix. I wanted a simple answer or a quick round of pills. But no.

The results indicated a type of auto-immune illness. (I don’t say ‘another’ because I am not believing fully the autoimmune theory of MS) The tests prompted the doctor to look at my last brain MRI and contact my neurologist to tell her that perhaps what has been labeled “MS” has really not been MS, but lupus. Lupoid sclerosis is the term she used– a kooky phrase that indicates a fusion of MS + lupus. My neurologist was adamant that my MS was really MS and that the lupus was just another diagnosis, separate. Like a bonus. But then there was more–a coagulation problem that indicates lupus, and adds a high risk of blood clots. It was then that I felt a bit like fainting, because, you see, I have a fear of having too many diagnoses to carry.

The blood tests have to be repeated in 12 weeks according to diagnostic protocol, and then, “We’ll see.” I am lingering in that land of waiting to see, but I am not a good waiter at all. I’m busy looking for other answers that don’t include more drugs (a favored drug for lupus is one that could cause irreversible eye damage). Mostly I’m trying to stay busy living, which, when done correctly, is the best revenge of all.