Hello, I have been diagnosed with MS and I would like to share some of my experiences and what has worked thus far for me. I have several “lessons learned”, which may be of benefit to others.
Compared to many who have MS, I am a relative “newbie”, having only been diagnosed in December 2004, however based on a review of MRI’s dating back to 2001, I have had lesions in the brain at least that far back.
Like many with MS, the path to being diagnosed was difficult. It really started on the first Saturday of February 2004, when I experienced 4 “episodes” of what I can best describe as vertigo. Each episode only last about 8 to 12 seconds, but it was very unusual for me. Over the next couple of months they escalated in symptoms, frequency and intensity, such that the average episode started with 2-4 seconds of numbness in my left cheek, followed by 8-12 seconds of speech slurring and complete loss of muscular control of my right arm, this would be followed by 15 to 25 seconds of hot flashes in my left arm. (Weird is the best way to describe them.) These episodes would happen ~30 times on a “good day” and up to 85 times on a “bad day”. (Actually, the numbness in my cheek did not develop for a couple of months, and it really helped by giving me a precursor that my speech was about to go to hell, so I would cough and pretend that I had allergies, until I could speak without slurring.) During the first month I spent 3 days in the hospital having virtually every test known, including MRI’s. Over 3 months I saw 9 different Doctors, including 2 Neurologists, none of whom had a clue what was wrong.
In mid-May, I developed a new symptom, I got a PAIN in the neck, like nothing I have ever experienced. It was excruciating and I had to take multiple Tylonol-3 just to get to sleep at night. By this time I had given up on Medical doctors and decided to go to a Chiropractor. Up until then, I had been very mainstream in my thinking, and almost regarded Chiropractors as quacks, even though I had some very good friends who were in this occupation. I went to see Drs. Beth and David Quartell, they were awesome. First, Dr. David spent a couple of days reviewing my medical records, including copies of all of the MRIs I had. Dr. Beth took some X-rays. When they briefed me on his findings, he explained that the vertebrae in my neck were severely misaligned (something I had already been told by Orthopedic surgeons in 1996 and 2001, they both said nothing could be done about it.) Dr. David however, said that he could properly align the vertebrae, especially the C2,3 bones that were the worst. He thought that this would really help the pain I was experiencing, although he did not know about the various episodes that I was still having.
He also asked if I know what “demylation” was. I told him, I did not have a clue. He explained what it was and told me that I ought to look into Multiple Sclerosis, as every MRI I had, showed bright spots which were had been highlighted by the radiologist comments as possible demylation. After seeing so many Doctors, I thought for sure that one of them would have mentioned this. Besides, early in the process of searching for answers as to what the “episodes” were, I had looked at MS and since I did not meet the typical profile, “women between 30 and 50”, I had dismissed the idea.
That day, May 27th, I started his treatments or adjustments. I experienced almost immediate relief. After 2 adjustments, the pain in my neck was significantly better. Unexpectedly, the “episodes”, were less frequent and over the next 3 weeks got significantly less intense. On June 21st I slurred words for the last time. The only symptom left was the left arm hot flashes, and I only had them 3-4 times a day and they went away after 6 more weeks. It was during these 6 weeks that I noticed that I had some very mild numbness in the right thumb and next 2 fingers. I am not sure that this had not been around for several months, but I was so caught up in the “episodes” that I did not notice this.
After some consultation, with Dr. David, I went back to my Primary Care physician and told him about my experiences with the Chiropractor and the numbness I was still experiencing. He agreed to have me see a Neurosurgeon to investigate a possible pinched nerve. It took awhile to get the approved referral, but I got it. Then the neurosurgeon would not see me, until I had more MRIs, both with and without contrast of my neck. Once I got them, he again refused to see me, saying that I had to see a Neurologist, and not to waste my time, that I should go to one at either the University of Miami or University of Florida. As I live in South Florida, finally got the referral to the University of Miami. In the meantime, I spent a lot of time looking up each of the medical terms used by the evaluating radiologist of the MRI’s. They’re reading boiled down to I either had spreading brain cancer or MS. So when I finally saw the MS specialist neurologist at the UM, I think she was surprised at the relief I had on her diagnosis that it was MS. This diagnosis was given on December 6th.
She looked at all of the MRIs I had over the last 4 years and showed me evidence of active lesions in each of them. However, she also showed me that the MRIs showed that the lesions were healing, so that the newest MRI’s showed different lesions then the older ones. In my neck there was a lesion that was almost 2” long on my spinal cord in the vicinity of the C2,3 vertebras. It was no longer active, but covered with scar tissue.
At this point a I would like to give some of the “lessons learned.”
First, I’d like to talk about Chiropractic care and why I think that it helped me in my MS and why it is a mainstay of my regimen now.
There is no doubt that vertebrae “adjustments” helped get rid of the symptoms I had been having. I think if you have MS, that when a nerve is compressed, stretched, or otherwise stressed that it will probably undergo “demyelation” before a nerve that is not similarly stressed. I believe that by keeping my vertebrae properly aligned I minimize the “stress” on my nervous system and help keep it healthy. This is my theory, which I have not seen elsewhere, but it seems to fit the facts and at the stage I am in my MS, works. I cannot say that if there is more deterioration or if there is demylation already existing that Chiropractic care will help.
Second, in Dr. David’s waiting room was a copy of a book by Dr. Rueben Jordan, called “Patient Heal Thyself”. Certainly, I was receptive to his message that Medical Doctors did not have all of the answers and that only by research and taking responsibility for oneself would you ultimately come to good health. This book has since been taken out of production. The FDA sent him a letter, (it used to be on the internet), in which he was taken to task, not for the majority of the book which was how he overcame Crohn’s Disease, but he talked about using the same techniques to help cure his 80+ year old grandmother of cancer. I guess that you can give a testimonial about how you helped yourself, but cannot talk about how you helped others, (unless it is blessed by the FDA.)(I will not go into my opinion of the FDA.) I found the advice on eating organic food and using the line of supplements he had developed to be really worthwhile. I know that a number of health food stores in South Florida still have copies of his original book (he also wrote the Maker’s Diet).
Thirdly, even before my diagnosis I was taking a lot of supplements, mostly antioxidants. As a result of reading Patient Heal Thyself, I adopted a probiotic multi, and a green drink. Once I was diagnosed, I spent much time researching MS on the web as well as reading many books. I adopted Ashton Embry’s Best Bet Diet on January 1, 2005, and have not looked back. I take every supplement that he recommends, plus some, and follow his diet religiously. I probably average 10 Gms of saturated fat or less a day, (and this is from someone who had steak at least 3 times a week prior to this.)
Two of the theory’s that are discussed by Ashton Embry as possible causes of MS, hit home. As I will discuss below, I spent many years under the ocean, I did not take any supplements and it is very likely that I had an extreme shortage of Vitamin D. (I now take almost 3GMs of vitamin D supplements every day.) Secondly, after having 2 arthroscopic surgeries on my right shoulder in 1996, I took almost 12 aspirin a day for 5 years to help with the pain I had in my shoulder. In 2001, a doctor advised me that even though it was enteric-coated aspirin, I could be doing lots of damage to my kidneys and intestine, so I stopped. However, this put me at risk for a leaky gut. The probiotics, especially the Green Drink I have been taking are supposed to help cure a leaky gut.
Fourthly, in addition to Ashton Embry’s list of supplements, I take from the Garden of Life (Rueben Jordan’s company), Primal Defense(probiotic HSO’s), RM-10 (an immune system builder) and FYI (an anti-inflammatory supplement). I take these in direct opposition to the National MS Society’s warning to not take supplements that strengthen the immune system. It was my hardest decision and one I made after lots of discussion with Dr. David, who has a strong nutritional background.
Fifth, of all the books I have read, Climbing Higher, by Montel Williams is one of the best. Although, I have taken a different tack then he, I believe that the tenacity he has and the positive attitude is great. He has certainly helped me stick to the Best-Bet diet and what I am experiencing is nothing compared with what he has dealt with. He gave me the realization that those with MS, who have had the disease for many years are the true heroes of our society. He has my utmost respect, both because he has dealt with MS and the fact that he was in the Navy and I was on the receiving end of many of his contemporary’s advice when they led Direct Support elements. I know what kind of person he has to be.
The results so far:
In the middle of March 2005, I had a baseline MRI (with and without contrast) at the University of Miami, since the University is supposed to have one of the best MRI machines in the country. On April 1 I went to see the UM Neurologist again for a follow-up. She is very mainstream but agreed to support me in my decision not to use any of the ABCR drugs. I still have as the only external symptom of MS, slight numbness in the 1st 3 digits of my right hand. However, when she examined the newest MRI, she found NO ACTIVE LESIONS. This was the first MRI in 4 years that did not have active lesions. I realize that I am very early in MS, and that it will be a number of years before I can say for sure how it will go, but I am very encouraged and will keep on with Ashton-Embry’s Best Bet Diet and keep using the supplements that I have adopted.
I am sorry for the length of this post, I am afraid that it got out of hand. However, I’d like to post a few things about myself. I am a 57yo male, I spent 26 years in the Navy, mostly driving Submarines. When I was not on a Submarine, I was in Naval Intelligence. In addition to being a trained Nuclear Engineer, I had 2 tours as Commanding Officer of Submarines, so I am used to investigating things that go wrong and trying to get to the root cause. At one time in Naval Intelligence, I led a Department of 250 scientists and engineers, mostly PhD’s. My real job was to learn what they were doing, pick out the most important aspects and turn scientific speech, into third grade language that was quickly and easily assimilated by our national leadership. The closest I ever got to being in Health Care, was a stint as CIO of a Healthcare company after I got out of the Navy. A little over 2 years ago, my wife and I purchased our own company and I have spent 12-14 hours a day 6 ½ days a week building it up.
***** As things progress I will keep the MS community up with my progress. I hope that everyone finds something about MS in the many source that are available that helps them and that one day the real cause and a cure can be found. God Bless.