Life with MS & EDS

March 9, 2012

Gilenya Update

Filed under: Uncategorized — by mseds @ 9:05 am
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So, now I know why blogs about Gilenya were difficult to find!  There’s really nothing to report or complain about!  I started Gilenya over seven months ago and must say I love it.  I can almost forget that I have MS.  I pop a pill once a day and go on with my life.  I don’t need to set aside three nights a week for shots nor do I have to worry about keeping the next morning open in case of flu-like side effects.  Of course there’s no way to know if the pill is actually doing anything positive, but there are zero negatives to date.  I’ve not had any relapses, the eye doctor has monitored me for signs of macular edema (so far, so good), and my heart is great (had an EKG and echo cardiogram and the ticker is fine!)  My optic neuritis hasn’t improved, not that I expect it ever will, but it’s not gotten worse.  I’m not due for an MRI until this summer, so I won’t know until August about my lesion status.  Definitely cannot complain!

The hardest thing about Gilenya is remembering to take it!  It’s quite easy to forget, especially since it is so simple to take.  During the first two months, I missed a dose each month.  But, that brought me to a Sunday start-day for my pill packs and I really wanted to keep it that way to make things easier, so I came across a fool-proof method to remember to take the medication.  Put it with my dark chocolate stash!  Pick something you do every day or crave every day.  Put your Gilenya pack with it and you’ll never forget to take it!  I have a serious dark chocolate addiction.  I keep small squares of it in a kitchen cabinet.  So, that’s where my Gilenya lives.  It’s right next to the bag of chocolate.  I indulge in a square a day and that’s when I take the pill.  So easy!

I also owe updates on CCSVI and EDS, so I’ll try to get those thoughts together soon.  I feel like I’ve been hibernating from blogging all winter.  It’s time to get back to writing again!

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August 5, 2011

Gilenya – Week One

Filed under: Uncategorized — by mseds @ 8:35 pm
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I’ve been on Gilenya for a week now and must say that I love it. I feel more “normal” than I have in years. My mood has improved, too. It’s fantastic to not be doing injections. Pop a pill each morning and go about my life. No need to prep. No side effects after. It’s just great! My blood pressure is low, but I don’t notice it. If a doctor hadn’t taken it for something else and saw it was 100/60, I’d have no idea. It’s not far off from my normal 100/70, so I’m pretty confident that things are going fine. I did have a headache mid-week that lasted a day, but responded to Motrin. I get occasional headaches that come and go, so I don’t think I’m able to blame that on the new medication. So far Gilenya gets 2 thumbs up!

August 3, 2011

EDS Confirmed

When Little Sister was diagnosed with Ehlers-Danlos Syndrome (EDS) the summer of 2008 I was very focused on what that meant for her and to a lesser extent me. One of the first things I did for me was try to find an adult doctor so that I would have someone following my progress. However, the doctor I found at the University of Pennsylvania said he disagreed with my daughter’s doctor and said I didn’t have EDS since my skin was not stretchy. This was despite the fact that I bend in ways most adults cannot. I can put my legs over my head, I can bend my thumbs to my arms, and I can hyper-extend most joints on my body.  I have a classic “cigarette paper” scar on my leg. Those were the most obvious thing, but as a doctor he probably should have picked up on more things.  A few months later I received my MS diagnosis and that has occupied most of my time from then forward.

That all changed during my CCSVI angioplasty this past March. After the procedure, I had what seemed to be a dysautonomia reaction when the sheath was being removed. That freaked me out a bit and made me focus on the EDS side of things again. Thankfully Dr. Sclafani had an EDS doctor to recommend. I called her and four months later got to see her.

I highly recommend Dr. Francomano in Towson, MD. That was possibly the best doctor’s appointment I’ve ever had, and I’ve had a lot of them. She had reviewed the 30+ page questionnaire I completed and the test results she requested. She did a thorough examination. She noted all of the things I expected her to find and plenty more. I learned that my knees go 20 degrees past straight, that the whites of my eyes are quite grey, that my shoulders have hypermobility, that my feet are flat (but only when I stand), that my pinkies extend past 90 degrees, many of my reflexes are 3+, and several other things. I learned that my crumpled ears are an EDS thing, too. She respectfully disagreed with her colleague at Penn and confirmed what I already knew; I have EDS.

Next I need to learn more about how to manage my health. To ensure she puts me on the right path, she ordered several tests. I need to do a Tilt Table study to figure out my blood pressure drop problems and the dysautonomia. I need to have an upright MRI to check my disks in the cervical spine while looking straight ahead and then looking down to see if there’s any disc damage that would explain the hyper reflexes. I need to do a sleep study to figure out if I’m getting enough REM sleep. Lack of REM sleep could explain my chronic fatigue and insomnia issues. I’m also going to get another echocardiogram to serve as a baseline. I don’t have the results of the one I had in 2008 and haven’t been able to track down the results. Lastly, I’m going to have orthotic inserts made for my shoes. Little Sister has DAFOs (actually she’s graduated to Sure Steps) that extend past her ankles, but the doctor thinks I’ll be fine with just a shoe insert. The hope is to keep my ankles from collapsing. Hopefully all of this won’t cost a small fortune!

One of the most interesting things to me was her interest in the connection between MS, EDS, and CCSVI. It seems that more and more doctors are starting to connect the pieces and looking outside of their small boxes.  Cardiovascular health has long been an area of focus for EDS doctors, but until now they have focused on the heart’s valves and arteries. However, if there are issues here, why couldn’t there be problems with the veins? Veracious veins are a known issue with EDS, so why not explore our other veins? It’s an exciting time to have these diseases. Hopefully doctors will start working together in an interdisciplinary way and begin to connect more dots. I’m so fortunate to have found doctors like Dr. Sclafani and Dr. Francomano who are the kind of people who will do just that.

Lesson learned: never trust a first doctor’s opinion. My MS diagnosis was delayed by 7 years and my EDS diagnosis was delayed almost 3 years. Go with your gut and continue to seek answers!

June 28, 2011

Dear Rebif

Filed under: Uncategorized — by mseds @ 8:38 am
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Dear Rebif,

It’s time that we part ways. I’m moving on as you don’t fit well in my life.  You are far too high maintenance.  You waste three nights a week and the occasional next morning.  If you were as easy to inject as insulin, maybe I’d keep you around, but you’re not.  Before injecting, I need to make sure to drink at least 2 liters of water, sometimes closer to a gallon.  If my pee isn’t clear, I won’t inject.  I have to take 2 Aleve, warm the injection site with a heat pack, rub on alcohol, wait for that to dry a bit, then finally inject, endure the pain, put heat on again, and ensure to go to sleep within an hour so that you don’t make me sick. For months you gave me the flu.  Yes, it was gone by around 11 the next morning and yes, it’s a rare occurrence now, but I still need to plan for the chance you’ll wreck my sleep and the next morning.  You’ve also abused me.  I am tired of the itchy red spots that turn black and blue.  I bet people think my husband has been abusing me, but no, that’s all you, Rebif.  I’ve had enough.  I can’t even tell if you are doing any good and studies are questioning if you are of any use.  I’ve thankfully had no disabilities (unless you count Optic Neuritis) since my symptoms arrived in 2001.  I took nothing until 2008 (not intentionally, but that’s another story) and can’t say I’ve noticed any improvements since starting injections for MS.  You can take it personally if you want, but it’s not just you.  I dumped Copaxone before you.  You CRAB (Copaxone, Rebif, Avonex, and Betaseron) drugs just aren’t my type.  You’re cramping my quality of life.  It’s time to try something new.  I’m going to give Gilenya a try.  Hopefully the pill will be more my speed.

Take care,

Ivy

 

April 18, 2011

Well That Did Not Last

Filed under: Uncategorized — by mseds @ 8:33 pm
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It’s been about a month since my angioplasty procedure.  I’ve noticed small improvements, but not the big things others have experienced.  I thought maybe once I was off of the Lovenox that I’d notice more of an improvement.  My incision site and band-aid disaster did heal (for the most part, but you can still see the band-aid outline!) after being off of the Lovenox for a bit and the little black and blue marks at the injection sites faded fairly quickly.  However, the fatigue hasn’t faded as much as I’d hoped and I’m definitely not seeing any improvement in my optic neuritis.  Those are my two biggest complaints, so those are the symptoms that get the most attention.

Today I think I found out why.  I finally had the ultrasound of my thyroid.  When I had my CCSVI ultrasound, Dr. Sclafani found nodules on my thyroid, so I followed up with an endocrinologist who ordered the dedicated thyroid ultrasound to make sure everything is okay.  After the ultrasound technician was finished she asked me if I knew that I had something going on with my jugulars.  I explained that I had just had angioplasty for CCSVI.  I said to the best of my knowledge, the right jugular is open and doing well.  I explained that the left side has a valve issue.  She confirmed what I thought was the case.  The lower part of the jugular was open and looked normal, but the part higher up was definitely not normal.  She didn’t expand on her comment.  I asked to get a copy of the imagery, so I’m picking that up on Wed.

I sure hope that someone, somewhere develops a stent that is safe for use in jugulars.  It seems like that might be my only hope of having proper blood flow.  It’s pretty disappointing, but I’m not giving up hope.  Dr. Sclafani and other brilliant doctors who are dedicated to helping us are bound to come up with something!

April 11, 2011

I did it!

Filed under: Uncategorized — by mseds @ 8:52 pm
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I finally did it!  The up side of doing 20 days of Lovenox injections without an auto-injector is that I was finally able to do a Rebif shot without the autojector!  I pinched an inch, put the needle in, slowly pressed the plunger (was still to wimpy to do that quickly), pulled it out, let go of the pinched area and there wasn’t any pain!  I’m not quite ready to self-inject other body parts, but will keep doing it this way on my stomach.  I’m curious to see if I bruise any less.  I still have a lot of black-and-blue marks from the Lovenox injections, so I’m not convinced this is going to make one bit of difference, but it will be an interesting experiment.

March 31, 2011

Allergic to Band-Aids

One of the things I was most worried about during my recovery period after CCSVI angioplasty isn’t something that most people even think about.  I was concerned about band-aids.  I’ve always had trouble with them.  What they do to my skin is usually worse than the wound I’m trying to cover.  During college I had an angioma removed after it swelled and started to bleed.  When I came back for the follow-up, the dermatologist remarked how bad the skin looked from the band-aid and that the area where the angioma was removed looked great. That was the first time anyone qualified actually said I was allergic to band-aids.

I discovered that my skin could generally tolerate just one type of band-aid, Curad’s Sensitive Skin Bandages.  They became hard to find, so I bought a case of them on Amazon, fearful that I’d be stuck using gauze and paper-tape in the future should they ever stop making them.  I’ve tried other brand’s “sensitive skin” band-aids with zero success.

I can use the Curad bandages on my fingers without problems, but it seems that they aren’t quite good enough for other parts of the body.  I came home from angioplasty with guaze and a clear plastic-like cover over the incision site.  I left that on for a few days and then changed over to my Curad sensitive-skin bandages.  That went well for a couple of days, but then I started seeing irritation.  I could start to see the imprint of the bandage on my skin.  The incision hadn’t healed well enough yet for me to feel comfortable going without some kind of covering, so I left the band-aids on.  Stupid decision.  Here’s the result:

Angioplasty incision, surrounded by reaction to band-aid

You can kind of see the outline of the band-aid, even though it’s been off for almost 24 hours.  That looked worse about a day ago.  The lovely rectangle around the incision is from whatever they use to affix the gauze to the flexible bandage.  That part looked even worse last night.  If you look closely at the bandage, you can see a shiny outline surrounding the gauze.

Curad Bandage: Note the shiny area around the guaze

It is the shiny area that made the raw rectangle around the incision.  Lovely, eh?  Yesterday afternoon I changed back to using gauze, but gave up on that and decided it was time to just give up on bandages.  I’m trying to leave it open today, but when a wound is at the very top of your leg, it’s a hard area to air out when it’s 40-degrees outside and I need to be sitting at my desk all day.

I hope one of these days someone will make a latex-free, sensitive skin band-aid that doesn’t destroy my skin.  (Note that the Curad Sensitive Skin bandages are NOT latex-free.  Perhaps that’s part of the problem, but it really does seem to be the adhesive that caused the problem.  It’s hard to tell.)

~UPDATE~

A couple of days ago I spent my lunch break at CVS in their first-aid area.  I looked at tons of various bandage options and decided to try two things.  I bought a box of latex-free fabric bandages as well as a box of gauze pads and paper tape.

When I got home, I put the latex-free bandage on a random spot on my thigh to see what it would do.  So far, it’s red around the outside of the bandage.  While I still don’t know for sure if I have a latex allergy, my skin definitely has issues with adhesive.

On the angioplasty incision, I put gauze and paper tape.  Not only is paper tape really difficult to keep on given the wound location, but the parts that did stick made my skin red!  Isn’t paper tape supposed to be one of the safest things on skin?  Go figure it would be a problem for me!

My husband came up with an idea.  He covered the offending part of the Curad Sensitive Skin bandage with gauze.  Since it takes a few days for the outer edge of those bandages to mess up my skin, we figured this would at least buy me some more time for the incision to heal.  I just wish the darn thing would develop its own scab already.  I’m pretty sure the Lovenox I’m on is slowing the healing process.  It’s been two weeks and the area is still rather raw.  My fingers are crossed that his solution works.

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