A Reason to Blog

I’ve been trying to come up with a reason to blog for a while now. Unfortunately, I now have a main topic area. Just about 5 months ago I was diagnosed with Ehlers-Danlos Syndrome (EDS) and just last week found out I have Multiple Sclerosis (MS). Apparently I’m hitting the genetic jackpot left and right. My mind has been overwhelmed with the news and perhaps blogging will bring some clarity, allow some place to vent every now and again, and to have a place to track how things are going.

I’m not sure where this will lead or how often I’ll get to post, but here goes nothing….

Ivy

CCSVI Research at Buffalo

I’ve been trying to keep up with the buzz about CCSVI and am really excited about it!  It’s breakthroughs like this that bring a lot of hope.  I wrote Dr. Specialist for her thoughts on CCSVI, but given that it’s Thanksgiving weekend, I don’t expect to hear back until next week.  I bet she’s getting a lot of e-mail about it and wouldn’t be surprised if she’s coming up with a form letter to reply to us all.

Speaking of form letters, I read that the University of Buffalo is doing a research study to try to confirm Dr. Zamboni’s results.  I e-mailed them this morning to get more information and instantly received this form letter in response:

Thank you for your interest in the Combined Transcranial and
Extracranial Venous Doppler (CTEVD) Evaluation in MS and related
Diseases study. Chronic cerebrospinal venous insufficiency (CCSVI) is
an ongoing problem when blood from the brain has difficulty flowing
properly to the heart due to blockages or stenoses (narrowing of the
veins). The main goal of the CTEVD study is to investigate the prevalence (frequency) of CCSVI in patients with multiple sclerosis
(MS) when compared to healthy controls (HC) and controls with other
neurological disorders (OND). Another important aim of the CTEVD study is to investigate the relationship between CCSVI and clinical,
magnetic resonance imaging (MRI) and environmental-genetic outcomes in MS patients, HC, and controls with OND.

We have received an enormous response to recent media reports about
our study. Due to the number of applicants and limited funding we are
providing you some detailed information on our study and requesting
some details about you in order to assist us in evaluating your eligibility to participate.

1) Applications will be processed according to our study criteria and
in the order they are received.
2) Please only use the ctevd@bnac.net email address to communicate
with our study.
3) If you decide to write to the email address above, you will receive
a response with instructions to complete an online questionnaire.
4) Once the team evaluates the information you provide in the
questionnaire, you will be contacted to inform you if you are eligible
for further screening.

Please note this is a research diagnostic study – there are no treatment interventions planned in this study. The study procedures include doppler/ultrasound testing, blood collection, a clinical examination and completion of an Environmental Questionnaire. Interested participants can also have an MRI performed. A subset of these individuals with also have an MRI of the neck veins.

You must:
- Be an adult or child with confirmed MS
- Adult MS must be supported by fulfillment of the McDonald criteria
- Pediatric MS must be supported by fulfillment of Krupp and International criteria
- Have a disease course of Clinically Isolated Syndrome (CIS),
Relapse-Remitting (RR), Secondary-Progressive (SP), or
Primary-Progressive (PP) supported by the Lublin criteria
- Have normal kidney functioning as supported by lab work performed
within 2 months of MRI testing (within 2 weeks if other criteria are met)
- Be able to communicate effectively
- Pass screening for MRI and contrast agent safety
- Be able to travel to Buffalo, NY to complete testing (we only have
this site for testing)

You must not:
- Be in active relapse or have steroid treatment in 30 days prior to MRI
- Have any vascular or heart problems
- Have severe cognitive impairment/dysfunction
- Have a history of drug or alcohol abuse, cerebrovascular disease or
cerebral vascular malformations, head injury or brain trauma
- Have any vascular malformations (Bechet Disease, Budd Chiari Syndrome, Congenital vascular malformations, Deep Vein Thrombosis
within the past year, Chronic Venous Insufficiency of the lower limbs)
- Be pregnant or expect to be pregnant during participation

If you are writing on behalf of a relative or friend, please instruct
him/her to contact us directly at this email address: ctevd@bnac.net

Please do not make any travel plans until your enrollment is confirmed. All testing procedures are paid for by BNAC. However, there is no financial compensation for your participation, or travel and related expenses.

No Doppler or MRV reports will be given to participants or their physicians. Research MRI reports of the brain can be made available
upon request. If you think you are eligible to participate and are willing to travel to Buffalo, NY for testing, please take a moment to complete an online questionnaire which has been designed to assist our team in
determining your eligibility as well as providing valuable clinical data for your research record. The questionnaire can be accessed by going to:
https://vovici.com/wsb.dll/s/8727g41a07

Due to the overwhelming response, it will take some time to contact you for any next steps. But you can get the process started by completing the online questionnaire. Thank you in advance for your
patience.

Kind regards,

Cheryl Kennedy, LMSW, MPH
Clinical Trial Manger/Senior Project Coordinator
Buffalo Neuroimaging Analysis Center

They are about six hours away from here.  I’m not sure I’d drive up for this since they aren’t telling people what their results are.  I really want to know.  If I have a vein blocked, I’d like it opened again, regardless of where it is, but especially if it is going somewhere as important as my brain!  I doubt medical coverage would be willing to pay for this, but honestly, why shouldn’t they?  If I had a vein blocked to some important organ, my medical insurance would likely cover the procedure.  It seems like it’s worth trying to find a way to make this work.

Cardiovascular Research

I just read an interesting piece on some recent research that indicates there could be a cardiovascular component to Multiple Sclerosis and perhaps that MS isn’t an autoimmune disease after all.  I’m not quite sure what to think of this, although I do find it interesting.

Paolo Zamboni, a professor of medicine at the University of Ferrara in Italy, has a wife with MS.  He came up with a theory that excess iron can cause vein blockage.  His finding was that, “in more than 90 percent of people with multiple sclerosis, including his spouse, the veins draining blood from the brain were malformed or blocked. In people without MS, they were not.”

The excess iron can lead to inflammation and allow iron-damaged blood cells and other unwelcome cells to cross the brain-blood barrier.  By unblocking the vein (the procedure is similar to angioplasty), Dr. Zamboni treats the condition he calls “chronic cerebrospinal venous insufficiency.”  Fixing the drainage can treat and even prevent MS, he claims.

 

By unblocking the veins, he was able to eliminate most of his wife’s MS symptoms.  Others have had some success with this as well.  “The initial studies done in Italy were small but the outcomes were dramatic. In a group of 65 patients with relapsing-remitting MS (the most common form) who underwent surgery, the number of active lesions in the brain fell sharply, to 12 per cent from 50 per cent; in the two years after surgery, 73 per cent of patients had no symptoms.”

While this isn’t a large sample size, which causes me to be skeptical, it seems to warrants further research.  Has anyone else heard of this theory or about this research?  Does anyone happen to know if they are experiencing this kind of vein blockage, which is defined as chronic cerebrospinal venous insuffucuency (CCSVI)?

There’s additional information at the Multiple Sclerosis Resource Centre.

It’s my 1st MS-iversary

Today marks one year since my eye doctor called at 7:30 a.m. the day after my brain MRI to tell me I had MS.  I’ve been thinking about this a lot this past week and took a moment to reflect on all of the things I learned this year in addition to learning tons about Multiple Sclerosis.  In no particular order:

I learned that I am stronger than I thought I was!

I learned that I could get used to doing shots, although thank goodness for the AutoJect!

I learned that I could bond with people I’ve never even met and that they can offer an important source of support.

I learned that my analysis skills come in handy in my personal life, too.

I learned that there’s a whole other reason to hate my thighs!

I learned that I like my specialist better than my general neurologist and that having someone who knows a ton about MS makes a huge difference.

I learned that there are others like me out there who have both Ehlers-Danlos Syndrome and Multiple Sclerosis.

I learned the importance of ensuring docs also check the spine!

I learned that Copaxone doesn’t work for me and that sometimes it is necessary to change drugs.

I learned to time the arrival of drug shipments with something you really want to get.

I learned that one can eat an amazing amount of food while on steroids!

I learned that friends will gladly walk a few miles with you and help you raise money to battle your disease and that this provides a great excuse for a girls’ weekend!

I learned that it’s the little things in life that warm my heart.

I’m constantly reminded that I have fantastic friends and family.

Thank you all for being there for me!  It’s been a crazy year with a decent number of ups and downs and I truly appreciate you all.

Hello Rebif

Hi Rebif,

It looks like I’ll be acquainted with you soon.  This Friday will be a year since I was diagnosed with Multiple Sclerosis.  The drug I chose to help me fight the progression of MS did not work.  For some reason my body did not respond to Copaxone and new lesions emerged on my spine.  I have high hopes for you, Rebif.  I know that you are going to keep MS from eating away at my spine.  You’re my last hope at avoiding Tysabri, so please don’t fail me.
Regards,

Ivy

Greatly Appreciated

The past 12 days have been extremely busy and I was worried that I just wouldn’t have the energy to get through it.

It began with my husband’s short business trip, during which the girls were pretty darn good, thankfully.  Over those 3 days I packed the rest of us up, then on Friday we picked him up from the train station and off we were on a 6 hour drive for a long weekend in Williamsburg.  It was a great vacation!  Little Sister handled this far, far better than Disney!  I was pleasantly surprised. Unlike Disney, there was no assault on the senses.  She got sick of eating meals out, so we brought dinner in one night,  and she didn’t want to walk into the visitors center in Colonial Williamsburg, but once we got her to the kids orientation walk, she warmed up and really enjoyed it.  She’s sensory seeking when she’s in control of things.  One of her favorite parts was just walking on the cobblestone and crushed up shells.

On the way home from the vacation we stopped part way in D.C.  While trying to find a place to park to see the Air and Space Museum we drove by 75% of the buildings I’ve worked in.  I miss D.C., so it was nice to stop by.  We even met up with a good friend for dinner and arrived home only a little later than expected.

The next day was Veterans Day (one of my 2 favorite Federal holidays since I am the only one who has off in the family!)  My original plan was to be able to sleep in, but instead I had to go into town for my brain MRI, so I was out the door by 6 a.m.  That night I had to drive back down to D.C. for a meeting the next day.

I arrived back home just in time to see the girls before bedtime on Thursday.  Friday was a work day and that evening I scrambled to get ready for my Brownie Troop’s first camping trip.  We were out the door by 8 a.m. Saturday morning for another busy two days.  By Sunday afternoon I just wanted peace and quiet and time to sleep.

The greatest thing I learned through this experience is that I can do it when I need to.  I’m pretty good at mind over matter and can push through when needed.  I knew this would be a stretch, but I’m proud that I pulled it off.  Another thing I learned is that I need to avoid trying to do the round trip to D.C. in less than 24 hours.  It’s just too much.  I am going to start taking advantage of travel days and not feeling so guilty about missing my girls’ bedtimes.

There are three things that I am really grateful for (in no particular order.)  First is my husband and his mom for taking the girls out yesterday afternoon so that I could get some much needed sleep.  The second is that our good friends loaned us their timeshare for our vacation.  It was great to have a retreat.  The third is my fantastic coworkers and bosses.  When I met up with my friend for dinner outside D.C., she gave me a “care package” from my team.  It was a sweet card of encouragement and it was full of awesome gift cards to restaurants, a book store, and of course a place to get chocolate.  It was so greatly appreciated!

People ask what I need or how to help, but honestly I never know what to ask for.  It was such a treat to get the care package and it was exactly what I needed even though I never would have thought to ask for something like that.  I was really touched.  Having the afternoon to nap and a place to get away to were awesome, too.  There’s not much people can do for me, but I’ve learned that the thing I appreciate most is time.  Time to rest or time to have with my family.

If there is someone you know with a chronic disease and you are trying to think of something you can do for them, I highly recommend doing what you can to give them some time and even cards like the one I got.  “Get well” cards don’t work for us because these diseases aren’t curable (yet).  A “stay strong” or “we’re thinking of you” card is perfect and the more you can do to give them time they need for other things, the better.  I love that I’ll have a gift card to grab the next time I am too tired to make dinner.  I can order in a pizza or go out if we’re up to it.  I love that I have a gift card to a chocolate store so that I can get a chocolate fix the next time I get news that isn’t so great.  I also love the bookstore gift card because it will make me take time for me, which I don’t do often enough.

I’m so grateful for such awesome friends and family.  I’m really fortunate.

Good-Bye Trial, Hello Rebif?

Last week I saw Dr. Specialist. Our discussion started out with, “I don’t think it’s a good idea for you to go without treatment for three months,” which is what I’d have to do to be part of the trial. I responded with, “So, I guess you have the MRI results,” which she did. It was a mixed picture.

The good news is that my upper spine is looking better, for the most part. The lesions in the cervical spine demonstrated either a “mild decrease in expansion” or were stable. Some decreased in “conspicuity” however one was more “conspicuous” than before (meaning they can see the lesion more clearly now.)

Moving further down the spine, the news got worse. Multiple lesions are stable in the thoracic spine, but there is new enhancement and extension of the lesions at T9-10.

The theory is that Copaxone isn’t working. Dr. Generalist would say that it’s too soon to know this, but I’m siding with Dr. Specialist on this one. I’ve been on the Copaxone since early February and seeing a new lesion and increased enhancement in October cannot be a good sign.

After this lovely discussion I got to do the standard “drunkard” tests. I can still walk a straight line, walk on my toes, walk on my heels, touch my finger to my nose and then her moving hands, see the correct number of fingers, etc. There was a medical student with her during the exam which was interesting. They were both fascinated at how far up I was able to get my feet when walking on my heels. We then had a nice discussion about Ehlers-Danlos and I was able to help education the med student. It almost seems as if the Ehlers-Danlos symptoms are making having MS easier than it would be otherwise. I don’t have the spasticity symptoms that can accompany MS. I may have poor balance, but my bendiness keeps me from falling over. I’m not sure there is any medical evidence behind this, so it’s just an observation on my part.

If I failed any of the drunkard tests, she didn’t mention anything. I’m pretty sure the only part of the exam that showed anything was the eye exam. I can still read the 20/20 line without glasses, but my right optic nerve is still pale and my color vision in that eye is still decreased. I’m pretty positive this is a permanent condition at this point. It’s generally not annoying, except that I’m having a hard time getting used to taking pictures with my left eye (I know, I should use the screen on the digital camera, but there’s still something about looking through the view finder that I can’t give up.)

We then talked about next steps. I need to get the brain MRI since I won’t be doing that as part of the study. That’s scheduled for next week. I don’t think they’ll find much. MS seems to be eating my spine, not my brain. Once we have those results, we’ll talk about whether or not to do a course of IV steroids again. I really hope to avoid that. We’ll also have a talk about switching off Copaxone and moving over to Rebif.

I’m less than thrilled about the idea of switching to Rebif, but when comparing the side effects of the interferon drugs (e.g., flu-like symptoms, potential liver damage, etc.) against the continued degradation of my spine, I think Rebif comes out on top. It’s only 3 times a week, so at least I will have less shots! There’s a positive part, right? Also, since I won’t get to do the study, I get to keep my Mirena (yeah!) I’m trying to look on the bright side. I have way fewer symptoms than I probably should have given the number of lesions on my spine and if starting Rebif will help fight the progression of my MS, I’m going to give it a try.

Autumn

Autumn is one of my two favorite seasons. I love the times of year when the world around me is in transition. I love the more temperate weather. I love the colors of the trees as well as the smells and tastes of fall foods. I love taking out sweaters, jeans, and jackets. I love spring, too, with it’s beautiful colors and emergence of life. I love being able to pack away those heavy clothes and dig out light weight clothing. I love that fresh produce is plentiful again. However, spring was always a bit less loved than autumn, because with spring comes tree pollen and tree pollen has always made me sick.

Unfortunately, autumn hasn’t been greeted with completely open arms anymore either. Since 2001, autumn has been a time when my optic neuritis flares up. My first attack was in October 2001. I now know that was probably my first MS relapse.

This October is kind of unique for me. The past 7 Octobers I spent expecting the optic neuritis to come along, but didn’t think much of it. After all, I had been told it wasn’t MS by a prominent doctor. It wasn’t until last year’s relapse that I even knew I had MS and that news didn’t come until closer to Thanksgiving.

I’ve been viewing this October as a test. Would my eyesight deteriorate at all this October, my first on Copaxone? When I started the shots, I always thought I’d have some indication of whether they were working once October came.

Well, we’re almost at the end of October. My eyesight never did recover after last year’s optic neuritis attack, so perhaps this isn’t a perfect test of Copaxone. I always see through my right eye as if I am looking through a fingerprint on a glass. I do think the vision is slightly worse than it has been the rest of the year. Unlike last fall, I do not have any pain behind my eye and I can still roll my eyes at my girls without any pain. I suppose that’s a good sign. I am concerned that the vision is slightly decreased, that the eye just feels different, and that it is puffy. I’m not sure why it’s slightly larger than my other eye. My chiropractor is actually the one who noticed it today when he asked how I was doing. I see Dr. Specialist tomorrow and look forward to seeing what she has to say.

Tomorrow is when I get the results of my latest MRI, which was a couple of weeks ago. I opted for just the spine MRI in case I end up participating in that drug trial I mentioned a couple of posts ago. The spine is where almost all of my lesions are anyway, so this is the part that I am very anxious to find out about. Here’s a picture of my spine from the MRI images I got to take with me on CD. I’m not quite sure what I am looking at, but in comparing this to other “normal” spine images I was able to find online, there’s definitely a lot more white on my cord than it seems there should be.

The amount of activity on my spine will be the clinical proof of how well or not well the Copaxone injections are working. If the activity level has remained the same or decreased, then I’ll have the Copaxone to thank and will be able to consider participating in the trial. If there’s activity, then we’re going to have to have a completely different drug talk and I’ll have to consider changing therapies. My fingers are crossed and I’m hoping for the best, but if you could send positive thoughts my way tomorrow afternoon, I’d greatly appreciate it! I’d ask you to send chocolate, too, but Posey already covered that part. (Thanks, Posey! The combo of dark chocolate and pear is extremely yummy!)