Life with MS & EDS

February 26, 2010

Mind Over Matter

Filed under: Uncategorized — by mseds @ 10:01 pm
Tags: , , , , , , ,

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.



  1. Sounds much better than the last dr. I have all the confidence that you will keep walking!!! Can’t wait to hear about Buffalo.

    Comment by posey — February 27, 2010 @ 8:18 am

  2. Good match it seems. 🙂

    Comment by Lisa Emrich — February 27, 2010 @ 9:28 am

  3. Wow, I completely parallel you in so many ways, especially wtih the symptoms. My lesions are all spinal as well. As is my cousin. My biggest “complaint” is the overall daily pain and muscle stiffness and the headaches, neckaches. I have been walking fine for a long, long time. Not far, not exactly briskly, but I get around. Mind over matter? I find this to be a very likely rationale! I just don’t know. Did we “re-wire” ourselves by sheer determination to overcome the the damage from the lesions? Is it fair to say that? But what about MS patients who are very handicapped, it wouldn’t be fair to say that they don’t want to get better, or that we want it more than them. So how are we so blessed, or lucky, or whatever we call it. So weird, isn’t it. So glad to hear that the second Gerneralist (I think we call them Primaries) has an open mind. Love your honesty, too, and reading your entries gives me so much food for thought.

    Comment by karen — February 27, 2010 @ 11:54 am

  4. I don’t have MS as you know just Ehlers Danlos. I am often told that it is amazing that I walk at all. It is my tenacity I am told that keeps me on my feet. I may stagger & fall, my bone density appalling,osteoporosis, osteoarthritis gnaws away at me. My PHN stabs at me. Is it awful to say that sometimes I wish I didn’t have a rare disease because I don’t feel I get the due care and attention. MS seems to get much more reverence from the medical profession. I don’t have MS but my poor proprioception means close my eyes and do all the neuro exams means it sounds as though you and I pretty much do the same things. I don’t know how you cope with both conditions. But I like you fight fight fight to stay on my feet. Sometimes I think it would be better to sit in a wheelchair but because of the stupid EDS that would dislocate a shoulder wrist etc. so it would have to be an electric one. All in all it seems better to walk ableit like a drunken duck and often very often needing the supportive arm of spouse. So on I trip and stumblein pain. It seems I am not the only one with a stubborn streak goodness knows we need that!

    I often wonder how the MS impacts on the EDS and vice versa for you and how the medical profession balance out the treatment of each together.

    I know I just like to read posts such as this you have just written because on days I feel like sitting down and giving up I know that you with so much more to put up with is not giving in and that helps me not to too.

    Take care and thank you for blogging.

    Comment by achelois — February 27, 2010 @ 7:31 pm

  5. hi there achelois. I like your comments, so genuine and sincere! I feel the same way when I see my MS doctor. In the waiting room are always folks who are worse off than me. Makes me count my blessings.

    Comment by karen — March 2, 2010 @ 11:56 pm

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