I am now 5 weeks out from the Liberation Procedure. I continue to improve. My life as well as my veins remain open. The biggest change remains the presence and persistence of energy. I have energy to walk like I haven't in years. I go farther,faster, steeper and longer than I have in years. It is so fun to be in nature, cruising without any of the obsessive negativity that accompanied me for so many years. I don't feel negative because I have less pain, more balance and so much more enjoyment. I am relaxed in my body.
I get the sense that my neurologic deficits in my legs are improving and will improve more. It is a subtle change and slow but things are different. My hip pain which was my constant companion the past 6 months is gone. I still have difficulty manipulating difficult terrain but I can do it. I'm slow on these paths but doing them. My neurologist characterized my legs as having "spastic paraparesis" over the last year. I look forward to walking into her office in a few more months and showing her my "new legs". I can jog short distances which I have not done in about 4 years. I still feel "clunky" but it's coming.
I sleep well (when I am not obsessing about some worry I have). Unfortuunately, the procedure has not cured my neuroticism. I guess I have to handle that on my own.
I met a young man at my work yesterday who has secondary progressive MS. He has had an intense decline over his 3 years with the disease. I wonder if the Liberation Procedure could halt, help his condition. I want so much for others to have the blessing I have experienced. I love to give hope to others but I am at the same time hesitant to be too bright and hopeful as others may have a different mechanism to their condition than CCSVI. I have read articles recently describing MS as having a variety of mechanisms. Dr. Sclafani(see link from 3-28) believes all MS patients have CCSVI. I know many neurologists don't believe the venous/vascular theory. It is quite a paradigm shift. Certainly, the inflammatory/auto-immune theory has applicabiliy and merit but there is more. I know that now from the bottom of my heart. In addition, the venous blockage theory requires an expensive(I still have not gotten my bill) and somewhat invasive procedure to fix. However, the re-birth I have had is real and truly miraculous. Others relate similar benefits. I dream of others being set free from the the personal body hells that MS wreaks. Doctors, PLEASE be open to the new. PLEASE read, learn and LISTEN. There are so many people to help and so much disability to overcome.
MS is the number one cause of disability in young people. There is now a new theory about its root cause and new proposals about how to treat it. God, grant us (the patients) patience while the medical world accepts this new knowledge and learns how to apply it but allow the medical world to see with open eyes and open minds new possibilities and paths to healing. Openness is such a diificult commodity to nurture and sustain in our fast-paced, chaotic world. However, it is the vital ingredient for healing, health and happiness. Open hearts, open minds, open veins. Let us all open ourselves to the possibilities that cross our paths today and in the future.
I get the sense that my neurologic deficits in my legs are improving and will improve more. It is a subtle change and slow but things are different. My hip pain which was my constant companion the past 6 months is gone. I still have difficulty manipulating difficult terrain but I can do it. I'm slow on these paths but doing them. My neurologist characterized my legs as having "spastic paraparesis" over the last year. I look forward to walking into her office in a few more months and showing her my "new legs". I can jog short distances which I have not done in about 4 years. I still feel "clunky" but it's coming.
I sleep well (when I am not obsessing about some worry I have). Unfortuunately, the procedure has not cured my neuroticism. I guess I have to handle that on my own.
I met a young man at my work yesterday who has secondary progressive MS. He has had an intense decline over his 3 years with the disease. I wonder if the Liberation Procedure could halt, help his condition. I want so much for others to have the blessing I have experienced. I love to give hope to others but I am at the same time hesitant to be too bright and hopeful as others may have a different mechanism to their condition than CCSVI. I have read articles recently describing MS as having a variety of mechanisms. Dr. Sclafani(see link from 3-28) believes all MS patients have CCSVI. I know many neurologists don't believe the venous/vascular theory. It is quite a paradigm shift. Certainly, the inflammatory/auto-immune theory has applicabiliy and merit but there is more. I know that now from the bottom of my heart. In addition, the venous blockage theory requires an expensive(I still have not gotten my bill) and somewhat invasive procedure to fix. However, the re-birth I have had is real and truly miraculous. Others relate similar benefits. I dream of others being set free from the the personal body hells that MS wreaks. Doctors, PLEASE be open to the new. PLEASE read, learn and LISTEN. There are so many people to help and so much disability to overcome.
MS is the number one cause of disability in young people. There is now a new theory about its root cause and new proposals about how to treat it. God, grant us (the patients) patience while the medical world accepts this new knowledge and learns how to apply it but allow the medical world to see with open eyes and open minds new possibilities and paths to healing. Openness is such a diificult commodity to nurture and sustain in our fast-paced, chaotic world. However, it is the vital ingredient for healing, health and happiness. Open hearts, open minds, open veins. Let us all open ourselves to the possibilities that cross our paths today and in the future.
Comments
Saw a fill in retired MD this morning and liked him very much. Turns out, I fascinated him... I came armed with highlighted sections of Mark Kalina's blog, and portions of the NMSS update on CCSVI.
For four years I have been complaining about bilateral pressure in my neck/throat area. The pressure is like when you stand on your head and all the blood rushes there. It varies in severity. I was told it could not be a blood flow issue because I was too young. So I saw an ENT doctor TWICE, had a cat scan to look for obstructions, thyroid checked etc..... To no avail. Diagnosis: It must just be a result of your M.S. so just learn to live with it... And so, I did.
The doctor today did not believe me when I told him that Mark had received angioplasty in his jugulars along with a stent in the right side. He interrupted me to tell me that I must mean the carotid arteries, as it was not possible to perform this in a jugular. I politely showed him that section of Mark's blog, along with the NMSS Venous Insufficiency report. Thank God he was open minded enough to look and listen! (Boy did I pray all morning that I would get a doctor who wasn't in a hurry to dismiss me and this crazy idea! And my prayer was answered!) I was hoping just to get a referral to a vascular surgeon, because he didn't think they would/could perform any other test to see it other that the MRI/MRV..... So, once again God Bless Mark Kalina... I produced his blog from March 11th that was able to prove that ultrasound was capable, if not better and way cheaper. My guy still is not sure if this is possible BUT... He made a phone call!!!! Can you even believe it??
I listened at the door, and could hear him say "Really? You can do that?" more than once, like they must be mistaken....
So, thanks to you and Mark Kalina and God: I now have an appointment on April 14th at 9am for a bilateral Venous Doppler on my jugular veins! And it only took four years! He still thinks they wont be able to fix it anyway, but all I was asking for was the test, and I got it! Still can't believe it... And I cannot thank you all enough!!!!
is now sending me to the MS Outpatient/ Neurocience Services at Scripps Memorial Hhospital where I will get Physical Therapy, Occupational Therapy, and Speech Therapy. They are going to evaluate about 30 categories. He never before sent me to this place nor has any neurologist I have ever seen. I have had 6. Even one who is the leading MS Neurologist in La Jolla. Dr. Jody Corey Bloom. Oh well, I did not know they had such a place. Anyway, I am happy to go. they will give me a disbility score that I can send to Buffalo New York if I get put on the list. I hope I see you tomorrow when I go visit Anita. Jonathan's arm got really arly after you saw his rash. It got bubbly and mottled like someone spilled acid on his arm. We can't figure out what it is unless it is a mite. It turned bright scarlet and dark. I always wanted to look at it. It really bothered him that I wanted to always look at it and show it to people. He prefers to keep quiet about health issues and goings on about himself but I could not resist asking him to show it to you. I am grateful that you wrote a prescription for him and called it in to the pharmacy so we could pick it up on the way home from the cancer center. You continue to inspire all of us as we recover from this and know where you used to be. I intend for them to charge you just a little bit for the procedure they performed. Hve a glorious Easter. Your blog picture is beautiful! Go Jules 80 I feel like you. My MRV is April 7.
I was dx in 1979 with RRMS, but am lucky enough to still be working full-time and am very active. Walk with a cane and can use but can’t feel my hands. For 20 years I managed my MS with diet, exercise, meditation, massage, chiropractic care, supplements and visualization. At the 22 year mark (2001) I started taking Copaxone after much research and soul-searching. I also started on monthly B12 shots. I believe very strongly that without either of these two interventions I would not have the energy or function I have. If you would like more description of why I believe this to be true, let me know. Finally, I believe the vitamin D supplements have helped; I live north of the 49th parallel and after 18 months of 4000 IU of vitamin D a day, I am still deficient. I was clearly functioning with very little Vitamin D.
The news about CCSVI that broke in November of last year has had me captivated. It explains so much of what I have experienced ... like why I can walk much better in late evening than any other time during the day (jugulars aren't necessary while upright) and why I feel absolutely terrible if I sleep too much (if CCSVI is accurate, and I have it, I have poor cerebral circulation while prone).
I am working with CCSVI Calgary to try to get liberation treatments indexed in the Canadian health care system. In the meantime, I have applied to go to go New York to have Dr. Sclafani test and, if necessary, treat my veins. I am anxious to find out if my veins are blocked; I believe increasingly that they are and want to be treated, of course. But I am also anxious to lobby every where, with everyone else, to make this a standard medical test and treatment, MS or not. I want my children and grandchildren tested. And I want to be a support for my fellow MS sufferers everywhere to get the medical care they need to capitalize on this new understanding. I spent years wondering how bad my life would get because of this disease; I’m not 30 years in and feel I got off lucky. I can commit the time and energy to help others not quite so lucky.
Cheers,
Dr. M. Cleveland-Innes