Five month anniversary!

It has officially been 5 months since my last venoplasty.  That is exactly one month more than my longest run of good health after treatment.  I hope it continues!

I am so proud of my 14 year old guest blogger.  She wrote from the heart, and I hope that hearing about my CCSVI experience from another's perspective was as interesting for you as it was for me!


I finally got to see my neurologist last week.  I had been rescheduled two times before I finally got some face time with the busy man.  I last saw him in the end of March when I was feeling fantastic.  I couldn't have known then that I would be back on Dr. Haskal's table for my fourth venoplasty only one month later on May 5th! How quickly things can change.  Sigh...  I had a lot to tell him.

I am very lucky to have such a supportive and open-minded doctor.  I wasn't worried that sharing my latest adventure in venoplasty would have any negative impact on our relationship.  This is the man who, when I saw him in November 2010 and told him that I was going to go to NY to have my veins tested, told me that he would get it done for me HERE!  Not at all the response I had expected after hearing all of the horror stories in the early days of CCSVI from my TIMS buddies!

So I filled him in on how these pesky IJV valves recoiled on me- again.  He told me that Dr. Fox from the Cleveland Clinic had just visited Georgetown.  Dr. Fox has done an autopsy study on veins of MS patients who died of other causes.  I believe that he found some screwy veins and valves!  I think that he said that the study will be presented at ECTRIMS (European Committee for Treatment and Research in MS) this fall. Sorry, details are not my strong suit!   Dr. Tornatore will be attending, and is looking forward to hearing a lot about CCSVI.

He is thrilled that I am working so diligently with my trainer.  He praised my leg strength and walking, although after sitting in his waiting room for 45 minutes, my walking was not as great as when I arrived.  Sitting for too long is not good for me.  But standing for too long is ALSO not good for me.  Sigh...  Maybe I should try leaning?

I told him that I had stopped taking LDN,and hadn't noticed a difference.  He said that if CCSVI does turn out to be the primary cause of my symptoms, then he would not be surprised that LDN has no impact on me.

I also discussed my always achy, often painfully spastic left hamstring.  Without this large spastic muscle, I may not have to take baclofen (medicine to treat spasticity) at all!  I asked him about Botox for it, and he thought it was a great idea to investigate!  He immediately shot off an email to his colleague who specializes
in Botox for spasticity.  I have a consultation this Friday!

I am not looking forward to presumably ouchy shots, but the thought of being discomfort-free for 3 to 4 months at a time is exciting! I am grateful that pain is not one of my biggest MS symptoms.  It can be an excruciating part of many people's MS profiles.  My hamstring always hurts, sometimes worse than others, but I can live with it.  But what if i didn't have to just live with it?   It calms down with baclofen, and a heating pad when necessary, but never relaxes completely.  I feel that I could do so much more if it would just chill out for me! My trainer and doctor explained that when one muscle is working overtime (my hamstring), the opposing muscle (my quadricept) is limited in what it can do.  I need that quad to be working to its best ability!  Maybe Botox will be my answer.  I'll let you know what the doctor thinks!