Date(s) & type of neurological diagnosis
Diagnosed 4/99 RRMS
Probably SPMS now
Lesion locations (most affected side, if known), number
: 16 brain lesions plus 1 brainstem, 2 large spinal lesions at C1-C4, lumbar unknown
MS treatments: Copaxone x3 years, Betaseron x2 years, LDN x6 months (discontinued), gluten-free diet x6 months (discontinued), Swank MS Diet x1.5 years, vitamins, supplements, Neurontin. Currently not on any DMD.
MS symptoms before stenosis intervention
- Severe fatigue
- Severe numbness in fingers, both hands
- Bilateral weakness in arms and legs
- Myoclonic spasms
- Bilateral foot drop
- Severe constipation, absent sphincter
- Difficulty urinating, have to bend over and push stomach, unable to urinate at all upon waking, usually can't go until noon
- Also urinary urgency at other times with incontinence
- Severe insomnia - crushing fatigue but unable to sleep
- Weak voice
Number of relapses before intervention (if applicable)
: Probably about 10 when RRMS?
EDSS before CCSVI intervention (self-assessed or physician-assessed?)
: 6.5 self-assessed (edited - I use rollator or w/c 99%)
FSS before CCSVI intervention
MSIS before CCSVI intervention
Are you using Inclined Bed Therapy I.B.T
Have you had testing (and possibly procedure) for blockage yet
Congenitally hypoplastic left transverse sinus, and jugular bulb. The already small left internal jugular vein, however, also appears to have a relatively significant degree of stenosis just below the skull base.
STENOSIS PROCEDURE HISTORY
Date/location of testing/procedure
: 6/26/2010 Katowice, Poland
Type of venographic study: (MRV, Doppler)
MRV done both locally and in Poland
: Stenosis right jugular (based on venogram, not MRV), and extremely small, underdeveloped left jugular
Type of procedure
: Balloon angioplasty both jugulars
Procedure/drug related symptoms
: Painless procedure but for some reason my left leg experienced pain afterward even though the catheter entered through the right
Number of relapses since first CCSVI intervention
Impact on your MS symptoms in words
June 26 (day of procedure): No change
June 27: Improved balance, 50% less fatigue, able to walk slowly unassisted, faster overall movements, just able to move better... able to urinate upon waking, insomnia completely resolved
July 1: All improvements vanished except it's a little easier to urinate plus resolved insomnia - at least I can get some rest!
July 28: One month update. I am seeing improvements that come and go. Note that previously I had occasional "good days" but symptoms did not remit to this extent so this is new post surgery.
- Voice is much stronger. (However, the other day my voice got weak again, to the point where it was annoying to speak up because of the effort. So... it comes and goes.)
- I can sing better and on pitch (voice too weak before).
- Some days I walk faster, with foot "drop" instead of "drag."
- One day typing dramatically improved, fingers suddenly flying across the keyboard without thinking about it. Usually my hands are so numb and clumsy that I have to look down at the keyboard, I hit Caps Lock constantly, and make lots of mistakes. Now typing is marginally better but not like that "one" day.
- For the last two days BALANCE has improved once more and I can make short, slow stints around the house without the rollator.
- Lots of prayer, lots of faith in the healing power of Jesus, lots of hope, the joy of the Lord: These are making me stronger.
EDSS as of this update
FSS as of this update
MSIS as of this update