Christina Kiening - Multiple Sclerosis

November 5, 2017


April 2017

"My MS started 2002 with a first inflammation of the optic nerve and hemiparalysis a few weeks later. Until 2012 I had a mild progression with a few minor incidents like tingling hands or feet. From 2012 on fatigue grew stronger and my vision became worse. Could not work for more than 30 hours per week. I had 2-3 flares each year. 2015 the worst flare ever which left my whole body numb, left side paralyzed and blind on one eye, for about six weeks bedridden. Took three months of physical therapy until I could walk again (poorly with a cane and not more then 300 meters). Unable to work for 6 months. Returned to work with 12 - 24 hours in November, next flare in February 2016. Debilitating fatigue, depression, cognitive deficits, total dizziness, no balance. Unable to work or do the household, hands were numb and week. MRI showed 9 active lesions in the brain, 5 in spinal cord, countless old sclerosis lesions. Never took any pharmaceutical drugs for MS, only had corticosteroids once in 2015.


Started the protocol on 29th of March 2016. Fatigue started to vanish after three weeks. Depression started to lift after four weeks. Gait and balance grew stronger, could do more physical therapy from the second month on. Body grew stronger, vision started to improve starting month 4. The first four months symptoms were coming and going, felt great one day, totally sick again the next. But after five months things became more stable and symptoms only faded away. After seven months on the protocol I can do regular sports at the gym again, go hiking and ride my bike. I still have minor vision problems (this is my oldest symptom) and the left side of my body is still a tiny bit weaker than the right. But I can walk without balance issues, use my hands and am strong enough for household work.


I am so utterly grateful that Dr. Coimbra helped me get my life back!!!


P.S.: I forgot the most severe symptom: Since May 2015 I suffered from spasms in my legs, since Feb 2016 in hands, neck and face (which made swallowing difficult). Had to use Sativex spray (Cannabis) which helped a lot for the spasms but turned me into a "stoned zombie". I am so happy that this symptom also vanished with Vitamin D...."

Christina Kiening is a patient from Germany; she has recently created a website with information in German about the Coimbra Protocol:
Coimbra Protokoll
http://coimbraprotokoll.de/


UPDATE:
October 2017

"Today I was asked: “How are you now after 18 months on the Coimbra Protocol?” My answer was: In principle, quite well, depends on what I compare it to.

In 2012 I was still working full-time, I still went skiing and jogging. But I had pain and spasticity from time to time, couldn't mountain bike downhill due to dizziness and visual disturbances, and in the evening I felt very exhausted. From Wednesday on I just waited for the weekend. But a relatively normal life was possible.

Starting in 2013, the downturn began, the relapses became more frequent and more intense, and gradually started leaving lasting limitations. In 2015 and 2016 (directly in the year before I started the Coimbra protocol), three of the most severe relapses left me with partial paralysis, I couldn't walk more than 300 m, I was incontinent, had sleep disturbances every day, spasticity, pain.I couldn't do anything without help in the household (and for three months also with my personal care). Most of the time I just lay completely exhausted and depressed in bed. I couldn't see my psychotherapist personally, but she accompanied me by phone through the darkest days. I had to stop working and was granted infinite disability pension in 2016. That was my condition before I started the Coimbra Protocol.

In 03/29/16 the treatment with the Coimbra protocol began: Within a few weeks my energy level increased, I could again take care of myself, I started physiotherapy. My mental condition gradually improved, on some nights my sleep was deep and restful. In the first six months it went up and down with symptoms that went, came back, became stronger, then completely disappeared. In combination with the incontinence, the 2.5 L drinking volume was a real challenge at the beginning (luckily, there are also half-inconspicuous thin nappies ...) But the bladder muscle got used to the drinking volume and with the commencement of healing of the newer lesions at the spinal cord the problem became less dramatic.

My body changed: In the beginning, my menstrual period shifted, my skin was blotchy, sometimes I felt very hungry, other times I didn't feel like eating at all.My daily dose of vitamin D was increased 4 times until finally it reached more than double the dose I had started with the previous year. With each dose increase, I had stronger symptoms, feeling sick for a few days. Then came a regular leap forward: Again more strength, more energy, more stable functions.

From the 7th month I had the feeling that things became calm and stable: All my body functions were better than ever before, my skin was radiant, many symptoms disappeared completely. In the 8th month, the first control MRI showed: No active inflammation, no new lesions since the last test, and some of the old lesions were gone. Remission was clearly there! My strength and co-ordination improved, the function of arms and legs became better and more reliable.Fast forward to 10/05/2017: The 18th month of the treatment is over, I'm starting my 19th month.

Today I can walk several kilometers (with breaks) on good days, so that longer walks or small hikes on even terrain are possible. With my recently acquired E-bike I can go on short bike rides with my husband, since my balance improved about 75%. My back starts to protest after two or three hours, but after a long break lying down and a little nap I can make it back home.And then there are the symptoms that will probably accompany me permanently in my future life: I can't sit upright for more than 2-3 hours or concentrate for longer. If I look at a screen for more than 90 minutes, my eyes begin to ache and the vision becomes blurred. In the morning I have to do yoga, stretching, sports, to start the day half decently and smoothly. Weekly physiotherapy has become an integral part of my life. In the evening and at some nights I still get a pronounced spasticity or neuropathic pain (especially when I sit for too long during the day). Sometimes I need painkillers or a muscle relaxant, if it is very bad I also use cannabis to sleep. At noon I am exhausted when I have done too much in the morning. Every day is still a balancing act: What is possible today and how much? Can I balance it so that after a lunch break I have strength again for the afternoon? Do I accept the invitation to dinner when I have worked in the morning? Does it make sense to accept the invitation for a small hike at the weekend with my friends? Can I manage to keep track of the Coimbra Protocol projects and to meet upcoming tasks in a reasonable time?

The question "How are you now?" is therefore a complex one. And my answer is: Depends on the direction I look, which comparison I draw inward. If I compare myself now to who I was in 2012, I am still a disabled retiree and I must eventually live with pain and reduced performance for the rest of my life. That still strikes me as difficult. I still have so many ideas in my mind, so much joy in working. Traveling is fun for me, but instead of a road trip in Australia, I will probably just go camping at a Bavarian lake.

But if I compare how I am today to the condition I was in the spring of 2016 before the Coimbra Protocol, then tears of gratitude come to my eyes. I did not dare to dream that I could be so well again! I had no hope that an independent life without help would ever be possible again. I had internally adjusted to the idea that it would be the wheelchair and a nursing home for me. It is a darn miracle that today I can work again 2-3 hours on three days a week and can add to my pension. And even when bicycling or walking, sometimes my gratitude spills from my eyes: It is possible to walk and ride a bike again! And I feel just as grateful and touched when someone reports an improvement of his/her condition with the Coimbra Protocol.

So it's all a matter of perspective. It makes the most sense to enjoy life here and now today to the fullest and to keep the gratitude firmly in our hearts.


 

 

 

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