This Is MS Multiple Sclerosis Knowledge & Support Community

Please know I am hoping for a positive and amazing outcome for you!
Take good care,
Beth

Hi Bluesky,

I just saw this now and I sincerely hope you are having great results. There is so much we do not know about this liberation treatment and the variants of MS. But I feel you will supply another piece of the puzzle. I love your poem and indeed it is an amazing day.

Waiting to hear your results. Just remember to take it easy and allow your body to begin to heal. My prayers are with you as with all MSers here on this site.

Guider

I never expected so many people to send so much support -- I am just overwhelmed and so happy and appreciative. Thank you to each and every one of you. I would love to write a personal note to everyone, because every single post means so much to me, but I should try to talk about some details while they're still fresh!

I may have to do this in pieces.

I hardly know where to start, but I'll give a little refresher about me. I was dx'd in 2000 when I was admitted via the ER with my entire right side numb. I was also having trouble speaking, my right arm and hand were not working, I had severe bladder retention, and my heart was periodically racing. Every test done was abnormal -- which seemed bizarre at the time, since it suggested a few different dx's, but I have since seen an expert in venous birth defects who explained that *all* of these things are essentially the same cause during fetal development.

Testing found
* a venous angioma
* about 15 periventrcular lesions on the MRI
* abnormal EEG (I do have trouble with seizures)
* echo of the heart showed an aneurysm between the heart walls; apparently a very common birth defect
* heart monitoring showed accessory pathways that caused the extreme tachycardia I was having (again, a common birth defect)

They gave me a dx of MS plus all the other "unrelated" issues. I had two radiofrequency catheter ablations to fix the tachycardia; the procedure is almost identical to the Liberation procedure, using twilight sleep and catheters through the groin, except they burn away portions of your heart that are trying to interfere with the normal pacemaker, (EEEWWWWW!)

I experienced a severe and very disabling MS course. I went on Avonex right away. It didn't work. Went on double-dose Avonex. It didn't work. Entered a Rebif clinical trial. Stayed on Rebif for years till I developed NABs. I don't really think Rebif worked, but my neuro wanted to think he was doing *something."

After two years I had my most severe flare-up and needed a wheelchair ever since. But then in 2003 I started IVIg, which was a miracle for me -- it stabilized me, and I actually lost of the disability I had accumulated.

After a few years of IVIg, I finally had an anaphylacdtic reaction and had to stop it, so I was back to more flare-ups and disability again. I have had basically continuous progression and frequent flare-ups throughout the years of my MS with the exception of the IVIg period.

I was professionally assessed at EDSS 7.5 in 2004, IVIg, let me improve back to 6.5 for a good period, and then I ended up back to 7.5 with some 7 days.

My biggest issues have been . . . good god, what aren't big issues?

This year I have had the most slippage in cognitive stuff. Vision has been tough all along, with a lot of iritis, a lot of the time. Double vision. Mobility, spasticity, fatigue, seizures, pain, blah blah blah.

So anyway, here I was yesterday. Ahem. I'll start a new post for that.

I'm on pins and needles waiting for your results post...hurry!

Thank you Blue for sharing so much of your process with us. Your path has not been unlike many of ours. i

I got my date 30 mins ago! I will look for your other POST. All the best!! Aliyah

So I got to the medical center with plenty of time. Everyone here is so incredibly kind. I am a single mom and as it turned out I had no one to be with my kids, so they were very helpful telling me ideas for how they could spend their time.

My children insisted that they needed to meet the doctor and give their consent before we could proceed, which was fine with everyone. He answered all their questions and was great with them. So they "allowed" me to go ahead with this. Everyone totally understood -- they've been through a lot of medical stuff with me, and I'm it for them , and they needed to know that everything was OK.

So they went off to the food court and the medical center store, and I got prepped. I don't remember everything, but I filled out forms, and I had brought a bag with stuff I thought I might need, all of which was useless except a pair of big fluffy socks.

I made a point of telling them that I was partly wanting to be aware but also anxious, so I really didn't want to know very much. The woman who would be in charge of my anesthesia said she was a great bartender and I was in excellent hands. She also advised me not to ask the doctor questions during the procedure -- she said I should let him concentrate and ask questions later, when there would be plenty of time.

I felt so well taken care of, and everything was awesome. They were so solicitous of every bit of comfort, even changing blankets to make sure everything was entirely cozy.

So during the procedure itself I was alternately dozy and paying attention. I could hear comments that caught my attention, like surprised exclamations about things they saw, which I assume were findings they found intriguing, and that sort of thing. They all worked so well together.

I also noticed a few sensations myself. At one point I could feel some stuff going on in my right ear. Sure enough, in the recovery room, all the sounds in my right ear were so loud! I have had a lot of trouble with loss of hearing in my right ear. Some3times it simply goes completely deaf for long periods. I am amazed that this could be such a direct effect.

I also could tell other sensations but it was more fuzzy -- I was trying to hold still, so I didn't want to go crazy trying out what I felt, but I noticed stuff in my face, in my arms, etc.

During the procedure, what I did NOT expect what how much the actual ballooning would hurt! But I dealt with it like I did childbirth. I had three huge babies (one was over ten pounds) with no meds. I just asked now long it would take, they counted for me, and I breathed and visualized positive images. I've definitely had worse stuff happen, but make no mistake, that was something to expect.

And at one point I could not help coughing and coughing; they said they were really close to a nerve that was being simulated and it was a natural reflex that was unavoidable.

Total time on the table: I got in the room at 12:30 and they were done at 4:45. They checked *everything* and did a ton of ballooning -- jugulars, azygous, I think the other thing was OK -- but it sounded like the azygous was an absolute mess.

I think the exact words I heard were, "We ballooned the crap out of the azygous." I also remember hearing "Is it just missing?" at another point. But I will get a full report later.

He did give me some images to take before I get the report. I was very amused to see my bony spine, the bottom of my jaw, my before and after azygous, and my lovely silver and peridot dolphin earring dangling in the middle of all the shadows. I wear the dolphins for safe passage.

Next post: How I felt after.

Thank you so much for your posts. It's a privilege to hear your story. I loved the part about your kids and I so hope that you are a "home-run" patient!

So I was still dozy when I got into the recovery area, and my children were very eager to see me. They brought me Russell Stover candy from the gift shop.

I was trying out my self a bit to see how I felt. I wasn;t really sure what to expect. I still felt overall very weak. But I did notice immediately the hearing in my right ear. And I was amazed to realize that I had sensation in my face -- usually my nose and the areas arounf it and inside it are numb, or at least novocaine-like. But I could feel it!

I kept rubbing my nose and face. I must have ;looked silly. But I kept saying, "I can feel my face!" And then I realized my tongue felt normal to9o! I have had a lot of trouble with spasticity in my tongue, and sometimes I am afraid to even move it because I get charley horses there. But I was wiggling my tongue. And this may not seem like much to anyone who hasn't experienced it, but I could move my tongue around all my teeth, even upside down, and it didn't eel at all like it was going to get spazzy!

I held my hands out and yes, I did still have the irritating tremor, but inside me it felt better, and it wasn't as obvious. Still shaky, but not as dramatic. I felt like a little kid!

However, I was very weak, and my legs and everything else were as weak as ever. And I was disappointed because I really wanted my eye to be fixed. My left eye has had paralysis for so long -- it doesn't move to the left -- which causes double vision to the left. No change.

But hey -- those were some pretty good things!

So then it was time to get dressed. I sat up and swung around to try to get my underwear on and all hell broke loose. My puncture site popped and the next thing the bed was full of blood. What a shock! I told my daughter to get the nurse NOW and they threw me back down and paged the doctor and got it stopped and decided that maybe I had too much by was of blood thinners. I had to lie flat with pressure another hour, and they were debating keeping me overnight, but finaly decided to send me back to my hotel with everyone's cell phone numbers. The main doctor lives just two blocks from my hotel.

So I a supposed to basically not move for two days, not lift anything, be verrry careful, and check in about bleeding. That was really scary. But they said they estimate that I actually lost only about a cup, even though it looked a lot worse.

So -- more stuff -- I fell asleep FAST last night -- and I woke up at 5 a.m. because I had to go to the bathroom. !!! I went to the bathroom and went BACK to sleep. I think the last time I woke up because I had to go to the bathroom was maybe 2002?

edited to clarify: I completely lost the ability to tell if I had to go the bathroom one day -- just suddenly one day -- in May 2002. Since then I have gone by the clock and used intermittent self-cathing or I know it's been too long if I feel nauseated. I would *never* wake up because I had to go to the bathroom -- that's why this was so significant!

I also never go back to sleep after I wake up. My usual routine is to wake up with a severe headache and general sick feeling, go to a sofa till I feel like I can handle moving again, and slowly go through morning stuff till gradually the worst of the morning sick feeling goes away. But this was different and good!

I am still definitely weak in my legs, but my hands feel better, my face feels better, my tongue is great, my legs are not so tight, I don't have the usual morning headache, I can move my eyebrows, and I am going to take it easy and see what happens. I wonder if I should take less baclofen?

Tough stuff: I am sore, sore sore. I feel like my ribs are dislocated and my neck is sore. I guess that's what they meant by ballooning the crap out of me. It hurts to breathe, but they said it was normal.

So that's the end of my novel for now.

So happy for you!

I am so happy for you Bluesky!!!! Take it easy now the next couple of days and give yourself time for getting better.

Thanks for the detailed story. Your children sound amazing. Best wishes for continued improvement.

WOW! Absolutely amazing
I am so happy for you and your kids. Take it easy and rest. Your body needs time to heal.

Wonderful! May the improvements continue!

Theresa

Thanks for sharing your incredible journey-- hope you see continued improvements in time!

Hey Bluesky:-)

So exciting for you!! Sending good wishes and prayers your way, I hope that you see all the improvements you hope for!!!

Looking forward to the next installment in your novel