A (almost) 3 month update.
Posted: Wed Jun 02, 2010 4:02 am
Hi all
Yes I am being lazy and just copying and pasting my latest report from my tracking status... I do have a good excuse though as I am at work
Just to summarise - I have had a great 11 weeks!
CCSVI TRACKING
MS HISTORY
Name: Lilaclomax
Male/Female: F
Age: 32
Date & type of neurological diagnosis: RRMS - since 2006
Lesion locations (most affected side, if known), number: Multiple lesions in cerebral hemispheres, lesion in right temporal fossa (potentially unrelated). Changes in L. 1/2 and 3/4 discs.
MS treatments: Avonex
MS symptoms before stenosis intervention: Optic Neuritis (loss of sight in left eye), L'hermittes (electric shocks down my back), Paresthesias (loss of sensation in multiple locations), Myelopathic exacerbation (weakness and inability to walk at times), fatigue, Trigeminal Neuralgia (labour pain in my right hand side of my jaw!), Diplopia (seeing double)... typing these out makes me sounds like a walking medical directory.
Number of relapses before intervention: 8
EDSS before CCSVI intervention (physician-assessed): 3.0
FSS before CCSVI intervention: 5.5
MSIS before CCSVI intervention: 71
Are you using Inclined Bed Therapy I.B.T? Y
Have you had testing (and possibly procedure) for blockage yet: Yes, both testing and Liberation Treatment
STENOSIS PROCEDURE HISTORY
Date/location of testing/procedure: 17th March, Katwice, Poland
Type of venographic study: MRV, Doppler
Diagnosis: Stenosis right and left jugular vein
Type of procedure: Percutaneous nalloon angioplasty right and left jugular vein (Cordis 14 x 40mm)
Procedure/drug related symptoms: Procedure took around 45 mins and was painless, Fraxiparine prescribed for 7 days. No pain after procedure, some aching in neck where ballooning took place.
Number of relapses since first CCSVI intervention: 0
Impact on your MS symptoms in words (include date in brackets if there have been multiple updates): (18/3/2010) To date feeling of warmth all over although this could be related to the IV from surgery. The fatigue has dissapeared and my double vision takes longer to appear.
(1/5/2010) Wow - has it been this long! The fatigue is non-exsistant, the double vision is always in the background but doen't make an appearance unless I have had a long day at work and even then it clears up after a couple of hours of relaxing.
I have had no other symptons and the feeling has returned in the thumb and first two fingers on my left hand. My ring finger and little finger still have a 'tingling' feeling but at least I can now feel what I am picking up.
I am still not taking any DMDs or other medication.
(2/6/2010) I have to hold my hands up... I have not been on this forum for a few weeks now, is this what happens when you get most of your life back? I am now back at work full time which for me says it all really, I have not noticed any new symptons and my fatigue has completely gone. My hands and legs work without any problems and even though I have not regained all the feeling in my ring and little finger on my left hand I have complete use of my hand.
The double vision is still an issue if I am hot or have done lots of exercise but (and this is the best part) it goes away by itself within half an hour of inactivity.
CCSVI - has it worked for me? So far so good, I know that I am only approaching the 3 month mark, yet just having 3 months of not even thinking about MS was worth the treatment... I just hope that I remain stable xx
Yes I am being lazy and just copying and pasting my latest report from my tracking status... I do have a good excuse though as I am at work
Just to summarise - I have had a great 11 weeks!
CCSVI TRACKING
MS HISTORY
Name: Lilaclomax
Male/Female: F
Age: 32
Date & type of neurological diagnosis: RRMS - since 2006
Lesion locations (most affected side, if known), number: Multiple lesions in cerebral hemispheres, lesion in right temporal fossa (potentially unrelated). Changes in L. 1/2 and 3/4 discs.
MS treatments: Avonex
MS symptoms before stenosis intervention: Optic Neuritis (loss of sight in left eye), L'hermittes (electric shocks down my back), Paresthesias (loss of sensation in multiple locations), Myelopathic exacerbation (weakness and inability to walk at times), fatigue, Trigeminal Neuralgia (labour pain in my right hand side of my jaw!), Diplopia (seeing double)... typing these out makes me sounds like a walking medical directory.
Number of relapses before intervention: 8
EDSS before CCSVI intervention (physician-assessed): 3.0
FSS before CCSVI intervention: 5.5
MSIS before CCSVI intervention: 71
Are you using Inclined Bed Therapy I.B.T? Y
Have you had testing (and possibly procedure) for blockage yet: Yes, both testing and Liberation Treatment
STENOSIS PROCEDURE HISTORY
Date/location of testing/procedure: 17th March, Katwice, Poland
Type of venographic study: MRV, Doppler
Diagnosis: Stenosis right and left jugular vein
Type of procedure: Percutaneous nalloon angioplasty right and left jugular vein (Cordis 14 x 40mm)
Procedure/drug related symptoms: Procedure took around 45 mins and was painless, Fraxiparine prescribed for 7 days. No pain after procedure, some aching in neck where ballooning took place.
Number of relapses since first CCSVI intervention: 0
Impact on your MS symptoms in words (include date in brackets if there have been multiple updates): (18/3/2010) To date feeling of warmth all over although this could be related to the IV from surgery. The fatigue has dissapeared and my double vision takes longer to appear.
(1/5/2010) Wow - has it been this long! The fatigue is non-exsistant, the double vision is always in the background but doen't make an appearance unless I have had a long day at work and even then it clears up after a couple of hours of relaxing.
I have had no other symptons and the feeling has returned in the thumb and first two fingers on my left hand. My ring finger and little finger still have a 'tingling' feeling but at least I can now feel what I am picking up.
I am still not taking any DMDs or other medication.
(2/6/2010) I have to hold my hands up... I have not been on this forum for a few weeks now, is this what happens when you get most of your life back? I am now back at work full time which for me says it all really, I have not noticed any new symptons and my fatigue has completely gone. My hands and legs work without any problems and even though I have not regained all the feeling in my ring and little finger on my left hand I have complete use of my hand.
The double vision is still an issue if I am hot or have done lots of exercise but (and this is the best part) it goes away by itself within half an hour of inactivity.
CCSVI - has it worked for me? So far so good, I know that I am only approaching the 3 month mark, yet just having 3 months of not even thinking about MS was worth the treatment... I just hope that I remain stable xx
