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Posted: Mon Aug 29, 2011 12:24 pm
by Vivianne766
Kate, I do hope u recover from this soon. It is a possibility since u already saw benefits from the procedure. Sending u positive thoughts.
Try to take it easy.
Just a question, did your doc. check u for May Thurner ? Iliac veins ?
Be healthy my friends.
Treat the MS as different symptoms
Posted: Tue Aug 30, 2011 5:15 am
by MarkW
Hello Kate,
I am sorry you have these symptoms. My recommendation is to treat the different symtoms with different therapies.
Firstly you have an active lesion on MRI, with new MS symptoms. A pulse of steroids is usually used in such cases. I use oral steroids (high dose for 5 days then reducing dose) but some neuros prefer infusions for the high dose stage. See your neuro asap for a prescription.
Secondly after the steroids have left your body and it has settled down, get a full CCSVI diagnosis and treatment. You need a specialist who will use IVUS and a catheter venogram together to find all your problem valves etc.
I recommend Dr S in Brooklyn but not cheap if your insurance will not cover it. The plus is that you can drive home and not take the risk of flying.
You will probably receive negative comments on steroids but they do have a track record in MS flare ups over many decades.
MS is multifactorial and needs to be treated as such.
Rest as much as you can,
All the best,
MarkW
update
Posted: Thu Sep 01, 2011 4:57 pm
by Kate_PghPA
...things are looking up...
I'm walking around apt. without walker today! Exercising 3x day!
really helps! still feel/look like "Herman Munster' in 'my unique gracefulness'
Flaccid, spastic muscles are finally leaving!! Praise GOD!
so my balance is much better!!
thanks for your supportive listening/ PRAYERS!...kate
US is scheduled with Pgh. Vas.Surg. who did original Venoplasty...
Sept. 7 ...don't know what his thought are until appt. after US
Dr's Nurse Practioner INSISTS D-Doppler test IS NOT appropriate for my condition...
Finally Dr.back from vacation...
Posted: Fri Sep 02, 2011 4:17 am
by Kate_PghPA
Finally Dr.back from 3 weeks ' vacation...
Sept. 7 Dr. X. Pittsburgh Vas.Surg. -original 'Liberator'
F/u appt Doppler US
ala Zamboni then Dr.visit...
gratefully, my insurer will pay for this... I hope!
thank you! kate
Re: update
Posted: Fri Sep 02, 2011 5:07 pm
by Cece
Kate_PghPA wrote:...things are looking up...
I'm walking around apt. without walker today! Exercising 3x day!
really helps! still feel/look like "Herman Munster' in 'my unique gracefulness'
Flaccid, spastic muscles are finally leaving!! Praise GOD!
so my balance is much better!!
thanks for your supportive listening/ PRAYERS!...kate
Great news...we will keep up the prayers and you keep up the hard work!! 3x a day exercise has got to be helping.
Re: Restenosis or SUPER Exacerbation or???--Please READ
Posted: Wed Sep 07, 2011 6:05 pm
by Kate_PghPA
Saw Vascular Surgeon in Pittsburgh today--this same Dr. did 'liberation procedure'
...opened up
narrowed Jugular Veins in neck...Good news: all is still well per
testing: Doppler Ultrasound ala Zamboni !
so why did I have MS flare up? God knows...so much is to be
yet learned about MS and blood circulation...
Am now Graduating to Cane or 'no cane' when toddling around apartment...
Keep doing my exercises as long as I can!!
Thank you all for your prayers and good thoughts!!
GOD hears our prayers!!! love, kate
PS Still plan to be 'Properly' treated in future by perhaps Dr. Sclafani !!
Re:
Posted: Thu Sep 15, 2011 6:19 pm
by Kate_PghPA
bluesky63 wrote:Greetings from the epicenter of the earthquake.
I am so, so sorry to hear of your troubles. If your flow was decent earlier this year, who knows what is going on now? There is so much to unravel.
I also had a dramatic downturn several months after angio, and thought the worst. The good news is that I recovered *so much better* than anyone would have expected. It wasn't perfect, but it happened, and if you had asked in the spring it would have seemed impossible. I dearly would have loved a window into my body during the acute issues and after. What was going wrong? Where? How did recovery happen?
There are so many systems that interconnect, and so many different theories of what is going on when a person has an MS flare-up. If you did have a positive d-dimer, it does not even necessarily indicate a blood clot. Interestingly, many people with MS have a high d-dimer during flare-ups (this has been discussed here but I can't find it right this minute -- Marie had great info on it). I am going to try to get some links for you. I have had a very high-d-dimer during flare-ups, but no clots on chest x-rays. However, no one has scanned other areas in the past. Could there have been clotting elsewhere?
I hope this doesn't sound cold or analytical when you are having such a personal crisis. Believe me, my heart is with you. I know those dark places, and I am sending you warmth and light and hope for the best recovery.
Bottom line -- I believe that I recovered so well because my vascular system was better able to handle the event I had, whatever caused it. I deeply hope the same will be true for you, and for other people.
~
~
Thank you SO MUCH 'blueskies' for your encouraging words...I was SOOoo Shocked
that 'liberation' would have 'failed me'...it was a huge blow to come to terms...
I'd read that Liberation 'stops MS degenerative process' and felt SO confident I would
be fine...then This: my Worst Exacerbation Ever: affected my ability to balance and walk--when
I have NEVER USED so much as a Cane...I passed for 'normal' but 'walked a little weird' --
Oh, Lord!! Now I realize even the Gift of Continence is just That a Gift...!!! as is well, EVERYTHING!
I love that you said about ' those DARK places'...I was definitely THERE...and am so grateful to GOD
that I am recovering MUCH Better than I expected...thanks to Great Physical Therapy!!!
I'm a retired - 'thanks to MS' , Registered Nurse...I fully know There ARE Worse Things than DEATH...
and I was contemplating my options...I am NOT so Brave as many think...but YOUR Email entry
touched me, i DID see HOPE....thank you! Thank You!!! love, kate
PS have discovered the Benefits of Physical exercise and Will continue!!!
MS is multifactorial and may need more than one treatment
Posted: Sun Sep 18, 2011 1:39 pm
by MarkW
Hello Kate,
I am pleased that you are recovering. It is important to record that you received IV steroids as well as physical therapy and hospitisation (rest) as well as further CCSVI treatment. Others seem to discount all treatments apart from CCSVI treatment, which is unwise in a complex disease like MS.
Kind regards,
MarkW
Re: MS is multifactorial and may need more than one treatmen
Posted: Mon Oct 03, 2011 7:12 pm
by Kate_PghPA
MarkW wrote:Hello Kate,
I am pleased that you are recovering. It is important to record that you received IV steroids as well as physical therapy and hospitisation (rest) as well as further CCSVI treatment. Others seem to discount all treatments apart from CCSVI treatment, which is unwise in a complex disease like MS.
Kind regards,
MarkW
~~~
thank you, Mark, for supportive comments!
Absolutely right Mark--
do I credit receiving Solumedrol - 'prednisone' 1 gram IV/day x 5 days IN Hospital,
Plus Physical Therapy out patient ... Note: I have NOT HAD 'further Ccsvi treatment' -- finances
are an issue. 'Conventional medical treatment' HAS been very helpful! And I restarted
Copaxone 20mg SQ qd also. Neurologists Do come to the rescue during exacerbations!
Thank God!