Life with MS & EDS

May 20, 2009

Thank Goodness!

Filed under: Uncategorized — by mseds @ 8:08 pm
Tags: , , ,

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.



  1. Hello,
    I don’t know how I bumped into your site, especially with how many times I have put in key words ehlers danlos and ms. I also have both and have been searching high and low for someone with both. Guess we are a rare breed!
    I hope this doesn’t creep you out or anything but if you would like to talk or anything, feel free to e-mail. It just really helps to talk with others that are going through what you/we (lots of us) are. I belong to groups of each disease but, seems there is always either something MS or something EDS.
    Anyway, hope things are going okay for you…
    Oh, and quick question. Do the MS meds cause your joints to hurt more? Mine seems to. Seems like neuro thinks it’s in my head, but it really doesn’t stop this. Almost like it inflames them. Hard to explain. I’m thinking of asking for Avonex so at least I can go through this few days a week instead of every other day.

    Comment by shell — May 21, 2009 @ 3:44 am

  2. Hi,

    I’m a fellow autoimmune mess who’s also a winner of the genetic jackpot disease club 🙂 and found your site while looking for other people writing about their chronic illness.

    I’m glad your appointment went well and SO glad you get to avoid steriods for now!! I just had cataracts removed from my long term relationship with mine, so I’m oh so happy anytime anyone else gets to avoid them. I’m also really glad you seem to have a really responsive doctor who’s on the ball, how wonderful!!

    I write a comic about my (often comic) adventures living with multiple chronic diseases, and I thought you might like to check it out for a laugh or at least to not feel so alone living with such unusual problems. You can find it at:

    Hope you continue to do well! I’ll come back and check on you soon!!

    – Miss Waxie

    Comment by misswaxie — May 23, 2009 @ 3:44 pm

  3. It’s great to meet you, Shell! You are the second person I’ve met since blogging that has both MS and EDS! Absolutely drop me an e-mail if you want to chat “off-line.” If it’s okay with the other woman, I’ll ask if I can share her e-mail address, too. It’s great to talk with others who have both of these lovely things. Thankfully my EDS is pretty mild and manageable compared to the MS. My little one’s EDS is certainly worse than mine.

    It’s sometimes hard to know if a symptom is being caused by one or the other. I tend to blame my joint issues on the EDS, but the inflammation aspect of MS has to play a role in that. The past year or so I’ve had more pain in my hips, which are probably my most mobile joint. I started going to a chiropractor at least once a month and it’s really helping! I don’t stay aligned for very long, but I definitely get relief from it. I tried doing the fish oil pills, but I get reflux and they seem to aggravate it. I guess I’m just not as sold on alternative therapies as perhaps I should be.

    The idea of a once a week shot is nice. One of the many reasons I decided against the interferons was that I didn’t want the flu-like symptoms. I’m achy enough without that. For now I’m sticking with Copaxone, but Dr. Specialist may ask me to reconsider in October when I see her again.

    Hope to hear from you soon!

    Comment by mseds — June 3, 2009 @ 10:10 pm

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