Life with MS & EDS

August 4, 2010

CCSVI – A Few Days After Angioplasty

Filed under: Uncategorized — by mseds @ 8:34 pm
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I had intended to try to write every day, but have been quite busy and have had less time at my laptop than I expected.  Day 2 after angioplasty brought a trip to a new children’s museum with the family.  I walked around all afternoon, making myself sit down every now and again so that I wouldn’t push it.  I would have felt even more fantastic if it wasn’t the day after a Rebif shot.  I’ve decided that my Rebif side effects are even more annoying now that I know how good I can feel.  Rebif side effect on an already worn-out me were annoying, but they are far, far more annoying on the new me!  Although I take Aleve before my shot, when I stay up too long after my shot, I get the chills, my teeth chatter, and I feel awful.  This was the case Saturday night.  I’m so used to my fatigue sending me to bed early and have basically forgotten what the signs of “normal” tired feel like.  I did my shot at my regular time, but was so awake that I stayed up until 11:30.  Then I was suddenly nauseous (that was a new thing) and had the chills!  Whoops.  Note to self: ensure to go to bed within 1.5 hours of doing the Rebif shot.  I was nauseous again in the morning in addition to my normal fever of around 100 degrees and feeling achy and worn out.  Post-angioplasty is the first time I’ve ever had nausea as a side effect.  Lovely.

Okay, enough venting about Rebif and back to how great I feel otherwise.  Since angioplasty, I’ve had much more energy, my hand and arm strength have improved, my appetite has significantly decreased, and my sense of smell is far better than it’s been in years (yes, I know, that’s strange!)  Don’t get me wrong, I still get tired.  I was yawning away this afternoon.  I was hoping that my incessant yawning would go away after angioplasty, but it hasn’t.  It’s decreased, especially the first couple of days, but it’s apparently not gone.  I’m trying not to read anything into that!

One of the best things is that my stress is gone.  I’ve been feeling some level of stress since I first found out about CCSVI.  First I couldn’t wait to find out what my veins looked like.  This past April I finally got that answer.  Then I was stressed about finding someone to fix them.  Now that they are fixed, the stress is gone!  Sure, I’m a little worried about when/if they are going to close again, but for now I am really enjoying my victory.

I was quite interested to see how my neurologists were going to react when I told them I had angioplasty.  I know neither of them is on board.  Today was my six-month check up with Dr. Generalist (my local neuro.)  As I was sitting down in his office he asked me how I was feeling and if anything was new.  I opened with, “I had my veins fixed,” and he looked at me curiously.  I went on to tell him the story and about how great I was feeling.  Much to my surprise, he didn’t have a negative reaction.  He actually seemed interested.  I was his first patient who was persistent enough to not only do the research, but to do something about it and he was impressed by that.  I don’t think he’ll be sending patients off for angioplasty any time soon, but I think he’s going to be open minded and follow the research and how I’m doing.  I can live with that.

He also gave me a tip about managing Rebif side effects.  I’ve only been taking 1 Aleve (220mg) before a shot.  He said to try 2 Aleve one hour before a shot and to take another Aleve if I’m up in the middle of the night (which of course I am because I drink so much water before a shot that I have to pee by 4 a.m.!)  I’ll let you know if the extra Aleve helps at all.  Since he seemed to be in an open-minded mood, I decided to push it and asked about LDN.  I got the same response I got from Dr. Specialist — some seem to do well on it, but there’s no scientific proof, so I’m not on board with prescribing it.  Oh well.  One battle at a time.

April 14, 2010

Doppler Day

Filed under: Uncategorized — by mseds @ 9:44 am
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Today is Doppler Day!  I’ll finally get to find out if I have blocked veins!  I’m more nervous than I expected to be.  I’m not at all nervous about the actual procedure.  There’s certainly nothing scary about an ultrasound.  I’m nervous about the results.  I’m worried that they won’t see any blocked veins and that I’ll have had my hopes up for nothing.  I don’t tend to be skeptical, but this week has been pretty lousy so far.  It has me questioning things whereas before I think I was pretty confident.

It’s strange to be wishing for “bad” medical news.  I really do want them to find blockages so that they can be opened and perhaps bring some relief.  It may not be a cure for MS, but perhaps increased blood flow will make a difference in my general health and well-being.  I can’t imagine it would be a bad thing!  I’m still amazed by the CCSVI research and am so thankful that I finally found someone who isn’t just blowing it off.

I’ll try to write with an update as soon as I get home.

February 26, 2010

Mind Over Matter

Filed under: Uncategorized — by mseds @ 10:01 pm
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As you know, I’ve been less than happy with Dr. Generalist and dumped him a few months ago.  I tried a new generalist that Dr. Specialist recommended.  My husband and I met Dr. Generalist II about a week ago.

I brought with my giant folder with MRI films, CDs, lab reports, doctors notes, and other papers related to my diagnosis.  I think my Ehlers-Danlos letter is in there, too.  After talking with the gentleman for a while, it was time for the exam.  It was the standard, “walk down the hall and back, walk on your heels, walk on your toes, shut your eyes, put your arms out, and touch your nose.”  Okay, I’ve done this all before.  No problem.  I’m good at the drunkard tests.  Well, I used to be good at them.  This succession of task orders was quicker than in previous exams.  I’d like to blame the pace for my inability to find my nose!  I thought I did somewhat okay, thinking that I hit the bridge of my nose rather than the tip, but I was mistaken.  While the doctor left us alone for me to get changed after he checked my reflexes and sensation, my husband turns to me and says, “you know you missed your nose, right?”  I explained that I didn’t think I was that far off to which he responded, “the first time you hit your eye.”  Yea, whoops.  He was probably right.  At least I was able to laugh about it.

After I got dressed, we went back into Dr. Generalist II’s office to talk.  While I was getting changed he had time to review the contents of the giant folder.  We talked about my history and where to go from here.  I explained that the original Dr. Generalist felt like he was playing second fiddle to Dr. Specialist and that he didn’t know enough about MS, so it just wasn’t working out.  It was only slightly less awkward than trying to explain to a new significant other why you dumped your ex.

We got into a discussion of MRIs and if I should keep getting MRIs down at Penn.  While we were on the topic of MRIs, he commented that, “given these MRI results, I’m surprised you can walk without a cane.”  I’ve had a hard time getting that statement out of my head since he said it.  I asked if it was unusual.  I take it that it is not common because his response was, “it’s better that you look like you do than your MRI does.”

Somewhere during that discussion we also talked about my Vitamin D levels and I said that I have no idea what my level is, but without daily supplements, I get extremely fatigued.  He said that the 3,000 IU I take daily is probably a good amount, but that he’d like me to get my blood tested to see what my levels are so that we can adjust the daily amount if needed.  I need to get my 3 month Rebif blood work soon anyway, so I’ll do that at the same time.  I’m glad he suggested the test.

I also asked about CCSVI.  He said I was the third person that week to ask about it.  I confirmed his guess that there’s a lot of buzz online about it.  He confirmed my assumption that the neurology world just isn’t ready to get on board.  He did say that he read the research and that it’s usually the kind of thing he’d be suspicious of, but he respects the doctors at Buffalo and that he’s curious to see their research.  I told him that I applied for their study and the testing there.  I guess that’s still my only hope since no one around here is willing to do the testing.  The folks at Buffalo sent out a note today saying that over 500 people have already applied for the testing and that they hope to contact people soon.  They plan to start testing in March.  That was good to hear!

So, the guy seemed decent and knowledgeable enough that we decided that I’d see him twice a year, but keep seeing Dr. Specialist for the MRIs.  It’s better to keep with the same MRI machines and I’d like to keep seeing her.  I’d keep seeing her exclusively, but she thinks it’s important for me to have a more accessible doctor in case anything ever comes up.  I think this guy won me over when we were talking about my diagnosis process.  I explained that I’d have been diagnosed much sooner if the first neurologist would have checked my spine back in 2001 and his response was that it’s not the patient’s responsibility to have known that.  I liked his attitude.

Ever since finding out that I have a lot of lesions on my spine, I’ve always been curious why I have so few symptoms.  My optic neuritis in my right eye seems permanent and I fatigue without Vitamin D, but otherwise it’s easy to forget that I have MS (except for the Rebif shots, of course.)  Then I have a neurologist basically confirm that it’s pretty amazing that I’m as symptom-free as I am and it makes me wonder.  Some people say it’s luck, some have even said it’s because G’d is with me (not sure about that one), but I think it’s mind over matter.  I’m someone who can talk myself out of getting a cold and will myself not to puke when nauseous (except while pregnant), so is it that strange to think that it’s mind over matter that I walk as well as I do?  Mind over matter is pretty powerful and I need to stop second guessing it.  It’s just not an option to lose the ability to walk, so I plan to keep on walking.

November 4, 2009

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.

October 27, 2009


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.

Spine October 2009

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!)

August 19, 2009

Dr. Generalist vs. Dr. Specialist

Filed under: Uncategorized — by mseds @ 12:48 pm
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Last week I had my check-up with Dr. Generalist.  I’ve not been there since I first started Copaxone about 6 months ago.  When I last saw him, he suggested that I confer with a specialist at a major hospital around here since she’d have more detailed MS-specific knowledge.  If you’ve read other posts, you’ll know that I saw her quite a lot this past spring.

So, the first thing he asked was how things were going.  I proceeded to tell him that things were going okay and that I’d gone through a round of steroid treatment back in April.  He was surprised to hear this.  I explained that Dr. Specialist thought this was the best way to go given the number of lesions that showed up on the spine MRI she ordered and given that I was having an increase in symptoms.

He was taken quite off guard.  I definitely offended him, but certainly did not intend to!  It didn’t occur to me that I probably should have gotten in touch with him during my visits to Dr. Specialist to consult with him before making decisions.  I was suddenly in the position of being stuck between two doctors.

He suggested that I either stick with him as the primary neurologist, which is what Dr. Specialist recommended, or switch to her as my neurologist.  He said that people usually have a general doctor that they see more regularly and check-in annually with the specialist to see what new research is out there, etc.  Rarely, he said, do people do it the other way around where they see the specialist more frequently because then visits with him become what this visit had turned into – a report of what the other doctor is doing.  This was rather awkward to say the least.

He offered his opinion that he probably would not have given me the steroid treatment based on the symptoms I had at the time (fatigue and tingling in my left arm and upper lip as well as optic neuritis that has been around for a while), despite the many lesions found on the MRI.  He did explain that the MRI was noteworthy because of the spread of the lesions and that their location and size didn’t matter.  I then asked the stupid question of why the lower spine was not examined, which is when I learned that the spinal cord doesn’t go down that far.  (Whoops, perhaps I should have already known that.)   Dr. Generalist said that he reserves steroid treatment for when symptoms impair ability.  He also said there are other things that could be used to deal with fatigue, such as Provigil.  I’m not ready to go onto medication for the fatigue since I’m pretty functional, but it’s nice to know it’s an option down the road.

I also mentioned that Dr. Specialist mentioned the possibility of switching to Rebif if we didn’t like the results of the next MRI.  Dr. Generalist didn’t like the sound of that idea.  He said that there’s no reason to think that the interferons (Rebif, Avonex, and Betaseron) were any better or more effective than Copaxone.  He also said that 6 months was too short to know if something was or was not working.  He said 2 years is a much more appropriate length of time.

I have a follow up scheduled with Dr. Specialist for another round of MRIs in October.  Dr. Generalist said there are two schools of thought with MRIs – one that thinks they are needed regularly to determine treatment and another that says to treat the symptoms, not what things look like on film.  He’s definitely more conservative than Dr. Specialist.  Personally, I like to know what things look like and what’s going on inside of me.  Yes, it freaks me out that my spine is covered in lesions that may someday lead to many more symptoms, but for now things are generally calm and that’s comforting.

Here I am, stuck in the middle.  I clearly have a decision to make.  I appreciate the advice and direction both doctors have given.  I feel that I’ve bonded more with Dr. Specialist and I like her “bedside manner.”  I’ve had the misfortune of knowing a lot of neurologists between myself and Little Sister.  They are brain doctors and quite brilliant people, but many of them aren’t wonderful with people.  It’s hard to find a personable brain doctor.  I feel torn and am not really sure which to pick.  They both have their advantages and disadvantages.  Thankfully I have fantastic health coverage (they both cost the same and I don’t need referrals for either), so this doesn’t factor into the decisions.  I’d have easier access to Dr. Generalist, but I think that if there was really an emergency, Dr. Specialist would fit me in as she did last spring.  I think that if I stuck with Dr. Generalist, I’d always wonder what the specialist would think, but am not sure I’d question things in the other direction.  I’m generally skeptical enough to question Dr. Specialist if I think she’s being aggressive and have my husband (definitely a skeptic, although he’d probably argue that) to ask the questions I’ve not thought of.  I think I’m leaning towards Dr. Specialist, but I guess I’ll run this past her in October and then decide if I’m going to cancel the 6-month follow-up with Dr. Generalist and part ways.

May 20, 2009

Thank Goodness!

Filed under: Uncategorized — by mseds @ 8:08 pm
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Today went far better than expected!

Other than the long wait for the doctor, the visit to Dr. Specialist went very well.  I did the full battery of drunkard tests again and they spent more time checking my sensations (does this feel as cold or less cold than this, can you feel these vibrations, etc.)  Things didn’t feel quite as cold and the vibrations were not quite as strong on my left arm and hand, but I could feel everything and that was a good sign.  My lip is definitely getting pins and needles, but it’s not numb.

It occurred to me that my optic neuritis which comes back each October is usually gone by Memorial Day, but other than the pain going away, I’ve not seen any improvement in my vision.  I’m worried that it is here to stay this time.  At least I still have 20/20 vision in the bad eye.  I was able to read almost all of the bottom row of the eye chart with my bad eye if I squinted (I couldn’t tell if something was an 8 or a 0, so I just said it was something round) and the color red wasn’t quite as bright as it is looking at it with my good eye.   It looks like someone took a gray tint over it to make it dull.

This is obviously both good and bad news.  Yes, there are two new symptoms, but they aren’t bad and they could clear up in a month or maybe they won’t.  But, things are good enough right now to avoid steroids!!!  YEAH!!!!  It didn’t even occur to me that she may have wanted me back on them so quickly, so I’m thrilled that I don’t have to do that again.  Also, she didn’t bring up changing my medication as I had feared.  I imagine she’ll bring that up during the October visit if things don’t improve.

So far, so good!  If things don’t get better in the next month I’m supposed to call back.  I assume that will mean another round of steroids, but I’m trying not to think about that and am hoping things improve before then.  Also, if things get worse or anything new appears, she wants me to call back.  All in all, it was a pretty reassuring visit!

The best news of the day is that my husband has a new client!  YEAH!  He’s an independent consultant and work’s been crazy slow for a while now, so we’re very excited that this came his way.

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