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!

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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.

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 trials.gov 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.

 

 

 

Celebrating with an Entry! Happy 2013!!

The thing about writing–a comment, a letter, an article–is that you have to think. Think about what to say and how to say it and who to say it to. And why. You definitely have to think about the why. Sometimes you must think about rules and protocol, and in addition, you wonder if what you say might seem obtuse or be taken the wrong way. Like it or not, writing requires thought. Thinking also involves quietness–a place of calm and serenity where thoughts can dance together and come out in strings of story or pearls of wisdom.

 

Today, and for a while now, writing has been difficult for me. I am not tired of doing it, nor do I think it a small thing to accomplish it, but it eludes me. I don’t understand why it is hard now, but I think I will blame it on having MS. I have blamed many other things on my condition, and it is not beneath me to use that excuse to benefit myself. Like the time I was walking on the beach in the Outer Banks and a beach patrol said he was giving me a ticket because I was parked in the wrong spot on the sand. Having MS certainly came in handy then—especially when I cried and carried on that I might not be able to walk the beach next year. Because I did it all in a Lucy Ricardo sort of way, I saved myself a lot of money that day, and I have the emotional swing of MS to thank for it.

 

Sometimes I can’t write because there is just too much to say. The explanations get wordy and need so many rewrites and edits. My thoughts get jumbled and the sentences get scrambled. I get like that with speaking once in a while too. If a story or situation is too complex, I might not venture the telling. Maybe there will be parts that need expounding or maybe I’ll lose my train of thought. Or perhaps I will be too tired. I can certainly blame that on MS!

 

So now the new year has come. As sure as the ball drops, January brings talk about resolutions. All the conversation—will you? won’t you?—is waning. In the weeks of watching and listening, I’ve noticed that those who DO make resolutions seem to be the go-getters who aren’t daunted by the challenges of changing. They are also the kind of people who don’t care about failing to keep a resolution; it seems to be the trying that matters. Then there are those who DO NOT make resolutions. The most common reason given for that choice is that the resolutions will only be broken. I think that’s a bit defeatist from the start, and that kind of attitude bothers me. I suppose it’s because I find status quo unbearable. Either that, or the non-resolutionists are perfect and don’t need to change. That irks me too. I thought it was intrinsic that everyone has an inner striving to be better. Apparently, I am not right all the time! And to make matters worse, my percentages of being right are falling fast. Can I blame that on MS? I think I can, so I will!

 

By the way, I am a resolution-maker. MS hasn’t changed that, but it has probably helped seal the deal. Is that another thing to blame on MS? Absolutely!

 

There is Hope

When I first received my MS diagnosis in April 1998, I was relieved. Relieved that the symptoms I was experiencing were not from a brain tumor; exonerated from the ‘psychosomatic’ label that I imagined people stamped on me. Multiple sclerosis was presented to me as something that wasn’t a bad diagnosis, but I was too naive to ask, “As compared to what?” I was told that lesions in the brain were caused by the disintegration of the covering of the nerves, and this in turn caused symptoms and deficits of varying degrees. Looking back, my presenting issue was a seizure disorder; then came leg weakness, optic neuritis and sudden deafness in one ear. After that, I had other sensory problems, speech malfunctions and pain. From the beginning, always a debilitating fatigue.

 The course of my relapsing-remitting MS was fairly normal, with exacerbations that required IV steroid infusions, prescriptions that treated symptoms and a daily injectable drug that was believed to be a decoy for the destructive forces attacking my nerve cell coverings. I went to seminars and talks, read books, and listened to my doctor. Even with all I knew about the disease, the real truths of my personal MS were unknown. What caused my MS? When would I have another flare up? Could I prevent a flare? Will I progress slowly or quickly? What daily things can I do to help myself? Sometimes I even dared to ask the idiotic question: Could it be something other than MS? Maybe some of these questions have twirled around in your mind, too.

 Not much has changed in the past fourteen years, it seems. Questions still come pouring from my heart. Doctor visits bring the same answer of We just don’t know. The three or four or six months between visits leaves plenty of time for trying to determine how to help myself. There’s also time to ascertain which new problem is from MS or from a side effect of a drug or from something non-MS related. (Like general aging!) It took me a long time to realize that during the interim, it’s up to me to maintain my quality of life and seek ways to improve it.

Then I got the opportunity to attend a medical conference in Orlando, Florida last month. Doctors and researchers from all over the world came to the scientific meeting of the International Society of NeuroVascular Disease. The first day was Patient Day and the program centered around the topics of MS and CCSVI (Chronic CerebroSpinal Venous Insufficiency which basically means there is a problem with the veins draining the brain and spinal cord). I was excited to learn as much as I could and see if I could find someone to answer my questions, old and new.

 The conference was held at the Orlando Hilton. Dr. Robert Zivadinov from Buffalo spoke first and said that genetics, the Epstein-Barr virus and smoking seem to be contributors to MS. While it has yet to be determined if CCSVI is a disease entity, a syndrome or an inflammatory condition, it is known that the prevalence of CCSVI has found to be greater in people with MS. Research is starting to link CCSVI to other diseases like irritable bowel syndrome, Parkinson’s disease, and other neuromuscular disease. A connection has also been made between Crohn’s disease and having an azygous vein abnormality. (The azygous vein drains part of the chest.)

 Then the “Father of CCSVI”, Dr. Paulo Zamboni, of Ferrare, Italy spoke. I was more than thrilled to see and hear him in person! He explained the research he began to help his wife and how he found a high percentage of people with MS also had problems with their veins. His study, trials, and subsequent findings fueled a revolution of sorts in the MS world. [When news of his findings spread, the social networks were set afire with MS patients demanding information and a treatment that they called the “Liberation Treatment” for its purported ability to free people from the bondage of their MS]. Dr. Zamboni stressed the need for ongoing clinical trials and the importance of having the same protocol to diagnose and treat CCSVI patients. One of the most interesting points he made was that dialysis patients whose jugular vein ports become occluded experience increased fatigue much like MS patients. At the end of the day, I had a photo op with him and babbled like an idiot when he asked my name. Totally, embarrassingly starstruck.

 Dr. E. Mark Haacke spoke of the importance of studying the blood flow, blood volume and iron content of the brain as well as the volume of the cerebrospinal fluid. Now there are imaging techniques that do all of this and more!. MRI is available in 3D; other imaging like Magnetic Resonance Flow Quantification can determine how the blood flows through the brain (and in which direction) and also studies how the blood crosses through the blood-brain barrier. Amazing stuff –and to think that all of it can be used to help us!

 Dr. Bill Code, an anesthesiologist from Canada, spoke about some of the signs of CCSVI caused by too little blood flowing through/out of the brain: fatigue, headache, foggy mind, balance issues, spasticity and sleep disturbances. He discussed the problems of having low blood pressure and ‘thick blood’ and said that if you are found to have CCSVI you are at higher risk for stroke. Dr. Code’s talk was insightful because he has MS and CCSVI which was treated with angioplasty. He was candid in divulging that even though many of his symptoms abated after the angioplasty, some were starting to return after eight months.

 Dr. David Williams, a dentist from Canada, reported some surprising connections between cranial dysfunction and disease. He said that people with MS have been found to have more movement in their skull bones! Some problems associated with MS, such as trigeminal neuralgia and headaches, could result from misalignment of the jaw, teeth clenching or those moving skull bones. He explained that when you sleep, the dominant veins to drain blood from your brain are your internal jugular veins. If you clench your teeth when you sleep, the tremendous amount of pressure exerted can impact the vascular system negatively. Dr. Williams also spoke of the importance of Vitamin D, and talked about the finding of spirochete bacteria in gum disease which was an indication of allergy to metals.

 I listened carefully to all the other speakers and took notes until my brain began to overflow! I got to talk with several of the presenting doctors between sessions and asked many questions, and often their responses were I just don’t know. But because I had watched them and heard their hearts for the whole day, I wasn’t frustrated or saddened by their response. My heart perceived a glow of hope rising off of them; these brilliant men and women are working to find the answers to their questions, and my questions and millions more besides. They believe the answers will come, and come soon, and I can rest in that.

Extending a hand

One of my daughters thought the two of us could spend time together helping at a local Refugee Center,  but on our first scheduled workday she was 1000 miles away in Florida, so I had to go alone.  I wasn’t familiar with the center’s location and I didn’t know anything about the group or anyone in it, but I needed to follow through with our commitment.  Besides, I need to practice adventures of all kinds on my own.  I’m getting too used to my comfort zone and that is the antithesis of who I am!  Or of who I used to be anyway.  Now, my MS has a way of becoming a roomy shelter for “I can’t”.   “I can’t” cross that busy street alone (vertigo, falling, disorientation…), “I can’t” help because my vision is double today, “I can’t” go there because it’s too crowded, or dark, or different, or hot, or confusing.

This time, I didn’t take shelter in my MS and I agreed to help teach sewing lessons to refugees with the group Women Transcending Boundaries.  On my first day, parking was a nightmare, but I found a spot in a tiny lot in an area known for its roughness.   After figuring out how to get buzzed into the building (because the doors obviously needed to be locked during the day) and climbing a steep set of stairs, I met a few of the friendly women who were regular volunteers. This was going to be fun!  Then the security guard came in to tell me that I was parked illegally. Down I went to search for another precious parking place—I drove around and around, walked back braving high winds and a chilly 15F, climbed those steep stairs again and hoped my asthma would not be triggered by the whole ordeal.  (Yes, I am so out of shape.)

The students trickled in for the first half hour of class time, because they said that with non-Americans it’s common that a class starting time is thought of as a suggestion. Then the vocabulary lesson was given by an animated retired French teacher. The ten or so students were mainly from Burma, Bhutan and the Congo and most don’t speak a smidge of English–and I mean a smidge–so the lesson was quite an experience.  The students listened and repeated the words and scribbled in their native hand, trying to copy the English words for needle, thread, scissors and the like.  After that, we turned on the machines and started ‘driving’ lessons—sewing on paper–following the printed lines to get a feel for the rhythm of the machine.  I helped a woman from Burma who seemed to be quite familiar with the art of sewing. Her lines were stitched accurately and when she finished with her last sheet, I said, “Very good! You get an A! A plus!!” and repeated it for emphasis (probably quite loudly since I’m not exactly quiet…) I was met with a confused look, no smile whatsoever.  Shortly after that she showed me some papers from her backpack and I realized her name was “Aye”. That explained the confusion!

My other student was a man from Bhutan. There had never been a man in any of the classes or meetings before (because it’s a women’s group) and his presence irritated one of the regular helpers.  But he was an enthusiastic vocabulary student and because he kept his head down at the right times, he stayed for the whole lesson.  When we switched to sewing with thread, he kept racing the machine and tangling up bobbin after bobbin, but even that did not deter him one bit. I was smitten by his determination and his fabulous ability to think himself invisible when his nemesis came near.

Over the weeks that I showed up to help, I climbed snowbanks, fell off snowbanks, got a parking ticket, got slashed by sleet, slipped on ice, and got soaked feet from slush puddles,  but compared to the hardships of the refugee world, what was that? Nothing. Absolutely nothing.

*Almost a year has passed since I’ve helped with this group. I was cleaning out my draft file and thought I’d post it anyway.