Life with MS & EDS

September 8, 2010

What’s one more pill?

Filed under: Uncategorized — by mseds @ 9:46 pm
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I used to hate swallowing pills.  I think that’s why I avoided vitamins for so long.  Then came injections for my MS.  After Copaxone and now Rebif, what’s a few pills?  My New Year’s Resolution was to start taking a multi-vitamin every day.  So far, this is the only New Year’s Resolution I’ve ever kept.  I added extra Vitamin D to that routine, so I now take 3 pills every day.  On Rebif shot nights, add to that 2 Aleve.  I’m up to 5 pills some nights.  So, what’s one more?

I recently read about Vitamin B12.  Until learning about CCSVI, I never would have thought to look into B12.  The more I learn about MS and CCSVI, the more it occurs to me that we need to be looking at the whole body.  MS is a complex disease and cannot be looked at through the narrow Central Nervous System lens.

Symptoms of a Vitamin B12 Deficiency are very similar to MS symptoms.  Per Wikipedia:

Neurological signs of B12 deficiency, which can occur with or without anemia, include sensory disturbances (due to damage to peripheral nerves caused by demyelination) and irreversible nerve cell death. Symptoms include numbness and/or tingling of the extremities, altered proprioception, impaired sense of smell, loss of appetite (anorexia), disturbed coordination and, if not treated in time, an ataxic gait especially in the dark when there is less visual reference[2]. In extreme cases, B12 deficiency can lead to a syndrome known as subacute combined degeneration of spinal cord.

B12 deficiency can also cause symptoms of mania, psychosis, fatigue, memory impairment, irritability, depression and personality changes.

Not all of these symptoms overlap with MS, but the majority do: fatigue, depression, sensory disturbances, demyelination, tingling of extremities, and so on.  Neurologists are just recently starting to talk about the importance of Vitamin D, but why on earth are they not mentioning B12?  My suspicions about neurologists continue to grow.  Why is it that the are so quick to prescribe expensive injections and other medications when something as simple as popping vitamins isn’t even mentioned?  It’s completely frustrating.

I’ve also learned that B12 plays an important role in anemia.  I’ve always just thought that was iron-related.  I’ve been anemic my whole life (I haven’t eaten red meat since I was 12 and rarely ate it before then.)  Every blood test I’ve ever had has shown that I’m anemic.  While pregnant I was told by my OBGYN to take iron, but no one ever mentioned B12.  At least the OBGYN was willing to discuss vitamin supplements, unlike my neurologists.  Dr. Specialist sees my quarterly Rebif bloodwork results, which always show anemia, and she just blows it off.  Dr. Generalist and my general practice doctor have ignored that, too, even though I’ve specifically asked each of them about my iron levels.  Again, very frustrating!

Speaking of anemia, from what I’ve read, B12 deficiency can occur with or without anemia, so you can’t only go by your regular labwork reports.  It looks like I am going to have to ask them to specifically check my B12 levels.  Not that I want them to take yet another vial of blood, but it seems that this information would be at least as critical as knowing whether Rebif is killing my liver, right?

The more I search on the benefits of B12, the more blogs and other websites I find that talk about the relationship between B12 and myelin.  Wikipedia has an interesting scientific explanation about the relationship between myelin and B12.  It’s a bit over my head, but still worth a read.  I wish I would have come across this information sooner.  I wonder what else is out there that is so painful obvious and simple to address that I’m missing because I’m not informed enough to know to go look for it?  If it wasn’t for my mom-in-law mentioning B12 and sharing an article, I never would have thought to Google it in the first place.

In honor of the Jewish New Year, I’m adding onto my New Year’s Resolution and adding B12 to my routine.  I hope B12 is as great as Vitamin D has been.  I’ll keep you posted!

July 8, 2010

New Link between MS and EDS?

Filed under: Uncategorized — by mseds @ 10:37 am
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This morning I came across a post at This is MS that discusses a presentation made by Dr. Guilio Gabbiani from the Centre Medical Universitaire in Geneve, Switzerland to a conference in Bologna, Italy.  I wish I had seen this before as it completely changes my perspective on my diseases.

Dr. Gabbiani took five specimens from internal jugular vein tissue removed by Dr. Zamboni from patients he treated endovascularly from areas not damaged by angioplasty and compared them against healthy control tissue.  His finding: MS patients had significantly more smooth muscle cells than the non-MS controls.  He found that there are less Collagen I type fibers and more Collagen III type fibers in MS patients.  It is thought that the connective tissue in MS patients switches from collagen I to collagen III.  Apparently it’s known to happen in the arteries, but finding this in the veins is a new discovery.  This could be a critical finding for CCSVI!

During the EDS diagnosis process, I learned that one of the major concerns that needs monitoring is cardiovascular health.  I’ve had an EEG for a baseline and so has my daughter.  I was told to get her EEG done every three years and annually during times of rapid growth (puberty.)  I thought of this in passing when I first heard of CCSVI and when I found out that my jugular veins are constricted.  Somehow the link didn’t set in until I read about Dr. Gabbiani’s findings.

It makes complete sense that my vein problem could be related to my other connective tissues issues.  How amazing would it be to find out that my MS is even more related to my connective tissues disorder than to an auto-immune disease?  I think there is a ton of research that needs to happen in this area, although I’m skeptical it will ever get funded.  I’m on a mission to find a doctor who knows about EDS and vascular surgery.  Since EDS already has a known vascular connection, I think this will be a much better avenue for me to pursue than talking with neurologists, who are obviously dead-set against discussing CCSVI with me.  I’ll let you know if I have any luck!

April 19, 2010

Almost Normal

Filed under: Uncategorized — by mseds @ 8:12 pm
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I was about to post something about my Vitamin D post, but then I saw Lisa’s over at Brass and Ivory.  She shared the same info I was about to on Vitamin D and did so in a fantastic way, so no need to repeat that part here.  Check out her story on Vitamin D and Multiple Sclerosis.

Dr. Generalist II was the first one to want to check my Vitamin D levels, which I was thankful for.  It’s nice to finally know where I stand.  I got my results about a week ago.  I’m at 39-39-4.  According the NIH, normal is 30 – 74, so Dr. Generalist declared me as “normal” and said to not change anything.  At the time of the test, I was taking a multi-vitamin that has 1,000IU of D3 along with an extra pill of 2,000IU of D3.  So, 39.  Normal?  It was at the low end, so I did my own research and found some of the same info Lisa references. I also found this great table at WomentoWomen.com:

Vitamin D levels — what’s really optimal?

>100 ng/mL
Excessive vitamin D (see note on toxicity)
50–70 ng/mL
Proposed optimal range
30–50 ng/mL
Suboptimal
<30 ng/mL
Deficient
<20 ng/mL
Overt vitamin D deficiency
<10 ng/mL
Seriously deficient

According to this chart, 39 is “suboptimal”.  I decided to add an extra 2,000IU of D3 each day to bring me up to 5,000IU daily.  I’ve only been talking supplements since Jan.  I wonder how low I was before then!  I wonder how much higher my D levels will be with the extra 2,000IU.  I hope it puts me closer to the 50+ range.  I wish I knew just how much I need to get up there.  Unfortunately, the medical community has proclaimed my levels as “normal”, so it’s hard to get advice.

Just after I got my Vitamin D test results, I went to my CCSVI Doppler Ultrasound.  As part of the test, they took my pulse ox.  The only other two times I can remember having a pulse oximeter placed on my finger were during child birth.  My rates were low both times and they put me on oxygen through the delivery.  I’ve never had it tested during regular times.  Turns out I’m just about “normal” at 94.  They like to see healthy people at 95 or higher.  At 92 they start to get concerned.  So, I’m just skating by on both Vitamin D levels and my pulse ox.

I’m so curious to see if the angioplasty opening my veins also improves the flow of oxygen throughout my body.  It seems that it would, right?  So many of my MS symptoms (fatigue, weakness, light-headedness, feeling like I never get enough air, tingling extremities) are also signs of a low pulse ox level.  It makes so much sense.  The more I read, the more pieces seem to come together.  Why can’t people with years and years of medical experience not put two and two together?  Specialists are great, but I feel like I’m missing a person that can see the whole picture and put together all of the pieces.  The holistic picture is missing.  I know the line needs to be drawn somewhere, but it doesn’t make sense for doctors to write-off just-about-normal as something that doesn’t need to be examined further.

February 10, 2010

Press Release from Buffalo re CCSVI Study

Filed under: Uncategorized — by mseds @ 1:43 pm
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The University of Buffalo issued a press release regarding the results of their first CCSVI study.  The Combined Transcranial and Extracranial Venous Doppler Evaluation (CTEVD) study included 280 MS patients (mostly with RRMS) and 161 healthy controls.  The results indicate that more than 55 percent of the MS patients had blockages in their extracranial veins, disrupting the normal flow of blood from the brain.  Interestingly, 22.4 percent of the healthy controls also demonstrated blockages.

“When the 10.2 percent of subjects in which results were border line were excluded, the percentage of affected MS patients rose to 62.5 percent, preliminary results show, compared to 25.9 percent of healthy controls.”

Robert Zivadinov, MD, PhD, University of Buffalo associate professor of neurology and principal investigator on the study stated, “The data encourage us to continue on the same course.  They show that narrowing of the extracranial veins, at the very least, is an important association in multiple sclerosis. We will know more when the MRI and other data collected in the CTEVD study are available.”

Complete data will be reported in April at the American Academy of Neurology.

December 20, 2009

Sums up my feelings about CCSVI

Filed under: Uncategorized — by mseds @ 9:00 pm
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An article written by Dr. Ashton Embry, “Hope and Elation – Frustration and Anger – Fear and Loathing: The Contrasting Emotional Responses to the Revolutionary Discoveries in MS Made by Dr Zamboni” so completely sums up my feelings about CCSVI.

When I first heard of this breakthrough I was over the moon!  A discovery of this magnitude was beyond comprehension.  I was elated.  Within a couple of weeks, my happiness turned to frustration.  Dr. Specialist called this “too soon for prime time” and I wasn’t even about to ask Dr. Generalist about this (by the way, I’m replacing him and will start seeing a new generalist in February!)  I’d asked every person I know of in the medical community or who was related to someone in the medical world if they knew of someone, anyone (!) who would do this scan for me.  It’s been a month of searching and I cannot find anyone to talk to.

I’ve pondered doing cold-calls to cardiologists and vascular specialists, but if I can’t get anywhere with people I know, how should I expect strangers to jump on board?  I feel like I’d be setting myself up for even greater disappointment.

Fear and loathing seem a bit extreme, but I am certainly growing more and more angry about the lack of response from the US media and from the doctors who are supposed to be treating me with my best interest in mind.  I’ve grown very suspicious of everyone’s motives.  Dr. Embry captures my thoughts on this exactly.  This is such a radical change that it’s no surprise neurologists are responding the way that they are.  It’s frustrating at best, but slipping quickly towards infuriating!

I remain hopeful that this breakthrough will actually break through and that those of us who want to have the scan will be allowed to and that there will be enough doctors out there willing and able to do the scans.  I remain hopeful that research funding will be available to determine the best way to unclog our blocked veins.  I’m optimistic that this will change the way in which MS is managed with medication, but not 100% sure we’ll all be able to stop taking our current medications.  Much more research needs to be done to find out the affect of iron already in our central nervous system.  Perhaps a whole new line of medications and treatments will develop that focuses on how to deal with the iron.

I guess I do remain hopeful, but that’s just my nature.  I’m still pretty darn angry and frustrated!

December 9, 2009

Buffalo Research Update

Filed under: Uncategorized — by mseds @ 1:46 pm
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This morning I got an e-mail from the “Combined Transcranial and Extracranial Venous Doppler (CTEVD) Evaluation in MS and Related Diseases study” folks at the University of Buffalo.  They acknowledged receipt of the online questionnaire I completed, but informed me that it will likely be 1 – 2 months before I hear back from them.  They’ll either inform me that I’m eligible or that I didn’t qualify.  Either way, it’s nice to have a time line and to know that they’ll contact me regardless.

They also reminded me that they will not be providing any of the CCSVI images to patients or their doctors, however MRI images will be available if requested.  I’ve still not found anyone to do the doppler, but I’m not giving up!  It’s just taking longer than I thought it would.

November 28, 2009

This is MS – Info on CCSVI

Filed under: Uncategorized — by mseds @ 9:30 pm
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I’ve spent much of the past few days reading all I can find about CCSVI.  I stumbled upon a site I didn’t know what out there – This is MS.  They have a fantastic amount of information regarding CCSVI.  If you are interested in learning more about it, definitely check out the site!

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