Am seeing an MS specialist at the Cleveland Clinic on Monday

Hi!  Haven't posted in a bit.  HAs are so-so with the stoppage of some meds and the addition of some others.  I was on a 6 day high dose prednisone cycle for the migraine cycle that was going on it's 3rd week.  I ended that the 18th.  It decreased in intensity, but didn't go away completely (never does).  Last Sat. nite (8/22) I knew a bad one was coming. My hand started to tingle and go numb.  I did the Migranal nasal thing and drank some blue Mt. Dew.  It hit hard.  It did go down in intensity by about Tuesday.  I still have a HA, but not a migraine.

Called the new HA specialist at the Cleveland Clinic on Tuesday.  Of course she is out of the office until 9/9:(  Talked with her CRNP.  She went thru the whole care plan the doc had put in place and asked if I had made all the changes which I have.  She said that I couldn't do anymore prednisone for at least 2 months.   She wanted to know what I was wanting from them.  I said that I just wanted to know if they had any suggestions.  She was very condescending and said that it could take 6-12 weeks for the new preventatives to kick in and that I had to be patient there is no quick fix.  Like I don't already know that - DUH!!  She said that she would document this and let the doc know when she comes back on the 9th.  That was it - no suggestions no nothing.  I just thanked her sweetly and hung up.  I think that she was waiting to see if I would ask for pain meds.  I won't do that and I have never done that.  My HA docs don't do that so I just don't ask.

The docs in Pitts. dx me with pseudotumor in March.  Had 2 LPs.  1st one - resident was awesome got in on first try.  2nd one - HORRIFIC!  I know that it is difficult because of my weight and size.  The resident tried 4 times and didn't get it.  I was in so much pain.  Finally the attending jumped in and got it on the first try.  On Monday, I am being evaluated at the CC by a neurosurgeon who specializes in pseudotumor.  I am prepared for another LP.  Hope it is better than the last one.  I know that I am going to get another lecture about weight loss. 

For the past 2.5 years since the migraines have been so bad, there have always been suspicions that I may have MS.  In 4/08  the did an MRI to r/o.  They said that I had "white matter changes in my brain" that were probably due to my migraines or it could be the beginnings of MS.  Well, I just got a copy of that report.  It said that I have a "focal lesion in the right temporal lobe" and "these findings (something about the white matter) would not be inconsistent with the dx of MS).  When I saw this I completely freaked out.  My neuro sx are getting progressively worse.  I have all the classic sx.  I have found out that the Cleveland Clinic has one of the best MS centers in the world.  You don't have to have a referral to go there.  I called on Friday and they gave me an appointment for this Monday!  I know that if someone does have MS it sometimes takes a long time to get a dx, but I am thankful that I am going to go to a place where I am probably going to get most of my ?s answered.  I will post when I get home.  Blessings - Kayleen