Life with MS & EDS

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.

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