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What a journey!

Oct 19, 2010 - 1 comments

239154?1288020639
My journey with health issues began July 2009.   Numbness in my left arm that would last up to 30 minutes, and come and go, prompted me to mention it casually to my gynecologist at my annual check up in September 2009.  I know what you're thinking.....your gynecologist?  Well, I already figured out that the numbness was NOT a stroke, as it would resolve on it's own with no stroke like side effects, and I am  not one that likes to go to the doctor.  SO  I just waited until  my annual gyn appt to bring it up and see if he felt it needed to be addressed.  He felt it was probably a pinched nerve, so off I went to the orthopedist.  After some PT and a spinal MRI, the ortho simply told me it was not related to my back and I should get myself a good primary care physician.  I had been using my gyn for that as I didn't have any health issues.  SO the new primary care doc ordered an MRI after I described my symptoms to him and  wouldn't you know.....we found some pesky lesions in my brain.  

Now it's December 2009, and off I go to the neurologist.  I meet with the neuro's PA who has been in the business for 25 years, and has the best bedside manner of any medical person I have ever dealt with.  He listens to my symptoms, examines me, and then, the last thing he does is look at my MRIs of my brain.  He tells me he is sorry, but it looks like MS.   When he is done, the neurologist comes in and does a very quick exam, and tells me not to go home and tell my husband I have MS.  But we need to be concerned about the lesions in my brain, they are not normal and should not be there and we need to find out why they are there.  When he is finished, the PA comes back in to schedule visual evoked potentials and labs to rule out mimics. He also wants to schedule spinal tap which I respectfully decline.  

After seeing a rhuemetologist, and endocronologist, we have ruled out all the mimics.  So it's back to the neuro for follow up and where to go now.  The  vep is negative, and the PA suggests the spinal again, and this time I agree.  

Now it's Feb 2010  and the spinal tap is negative for o bands and IgG but positive for increase in myelin basic protein. It's my understanding that this is a positive indication that I have MS.  As the PA is explaining this to me, all I hear is that I have MS, but what I think he was saying is that I have all the indications that I have MS, but if you look at the McDonald criteria they can't say that I have definitive MS.....so I agree to take home the information regarding treatment, as the PA recommends that I begin treatment.

After looking over the information I decide on REBIF and my PA agrees with that choice.

Fast forward to July 2010 - I have been on REBIF for 5 months, and don't really like the side effects, and it suddenly hits me that this is a lifetime deal....MS has no cure and if you want to keep it at bay, then you need to stay on treatment. SO I call my PA and tell him I want a second opinion.  He suggested that at the beginning of our adventure together, but I was too tired, distressed and confused to seek it at that time.  
Five months post diagnosis, it was all sinking in and I was ready to make sure I was doing the right things.

Now it's October 2010, and I am getting my second opinion with a neurologist in an MS clinic at a very highly respected university that has an excellent neurology department and medical school.  I was referred to the MS doc at the clinic, but am told he isn't taking new patients, but they can schedule me with a new neurologist on staff.
I spend two hours with this neuro.  He is very kind, yet unfamiliarity with the technology causes him to have to spend a lot of time looking over my MRIs.  He blows off his 9:30 patient and is with me from 8:30 to 10:30!  
He tells me that he is leaning towards a CNS vasculitis (we ruled that out early in my diagnosis with first doc) - says "possible ms".  Now my head is spinning, because I was sure that getting a second opinion would only solidify what the first doc said, and then I would know I was doing the right thing, and be able to move on with my life.
HA.....I called my PA after my appt and we had a long discussion.  I was surprised at how mad I was at him after the 2nd neuro put doubts in my head.  MY PA seems so confident that if I don't treat, I am at high risk for converting to MS.  And, he still feels that way.  

So now I am left to decide if I want to follow through with more testing the 2nd neuro wants me to have, although their office seems very confused with the scheduling and it's been two weeks now, and I'm still not scheduled for anything - and one of the office personnel that I spoke with re this blames it on the new doc????? Is that the DOCS job?  HMMMM - I know this guy is brillant BUT he is not the MS expert - I also have found out that the MS doc is taking new patients, but they are trying to build the new doc's caseload.  Another big HMMMM for me.

Oh and yes, one other big problem. My favorite PA is leaving the neuro's practice to teach.  So, I am left with a neuro that I have seen for about 10 minutes since this adventure began. MY PA knows me SO well, but the neuro - not at all.

So, here I was sure I could move on with the 2nd opinion firmly in hand, and I feel like I have totally regressed in understanding and accepting whatever is going on with my body.  Isn't life grand?

More to come!

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1386048 tn?1281015933
by michelleislay, Oct 25, 2010
hey wiggles,

what a story!  we havent' really met yet, but i popped by your profile to write welcome note when the title of your second journal caught my eye.  i'm sorry for you terrible, no good, very bad day!  (one of my fav. kids books!!), and carried on reading your journals.

i wish you the best of luck on this journey.  it sounds like you have a good sound head on your shoulders and are taking a lot of this with a good grain of salt.

so welcome, and i'll see you around here.

xo michelle

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