Columns Faith of the Mustard Seed - a Column by Debi Wilson What is Your Treatment Plan and Is It Helping Your MS? What is Your Treatment Plan and Is It Helping Your MS? by Debi Wilson | October 3, 2016 Share this article: Share article via email Copy article link No matter what type of Multiple Sclerosis we have, all of us MS Warriors are in this fight together. Even though everyone’s MS battle is unique, and each of us have our own treatment plan, we all share a common bond, and we hope what is working for one will work for us all as well. There are four types of MS. They are named and identified according to how the disease progresses in the body over time. Four types of MS Relapsing Remitting MS (RRMS) — This is the most common form of multiple sclerosis. Approximately 85 percent of people with MS are initially diagnosed with RRMS. Their symptoms include temporary periods called relapses, flare-ups or exacerbations, times when their symptoms are more severe. [This is now also known as Relapsing MS (RMS) on the basis that the disease does not really remit; even when symptoms reduce in severity, MS is still attacking the central nervous system]. Secondary Progressive MS (SPMS) — This is a second stage to Relapsing MS and, frequently, people with RMS will eventually transition to SPMS. In SPMS, symptoms worsen steadily over time, and are marked by periods of active or inactive disease as well as periods of disease progression. Primary Progressive MS (PPMS) — This type of MS is very rare, occurring in about 10 percent of the diagnosed MS population. PPMS is usually a slow progression of symptoms from the beginning, with no obvious relapses or remissions. Progressive Relapsing MS (PRMS) – The rarest form of MS, with approximately 5 percent affected. PRMS progresses over time with acute relapses and no remissions. (Some MS Societies, including those of the U.S. and U.K., don’t distinguish this type, considering it a form of PPMS.) There are many different therapies to try, but not all therapies work for all types of MS (and, for progressive types, no treatments are as yet FDA approved). No therapies are cures, but some help to slow progression or aid in the relief of symptoms. What treatment plan works best for you? Treatment plan options range from immunosuppressive drugs and steroids, to counseling, support groups, physical therapy, acupuncture, and massage. And from physical exercise and nutrition, to stem cell therapy. Others include naturopathic, supplements, and herb therapies. It is my hope for this article that our readers comment and share on what therapies work best for them, so others can benefit from their experiences. I have PPMS (diagnosed 2010), six months so far on the High Dose Biotin protocol. It seems I have slight areas of improvement in leg strength and spasticity. I also use homopathic leg cramp pills, hemp massage oil , 10,000 IU of vitamin D3 daily, and ride my recumbent bike regularly. I am anxious to read what you, dear readers, share. As I said earlier, we are all in this together, and we can all learn and gain so much from one another on this journey called MS. Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis. Print This Page About the Author Debi Wilson Debi is a retired admissions and marketing director residing in Oregon. She is a mother of three grown children and has three grandchildren. She was diagnosed with PPMS in 2010. With her column, "Faith of the Mustard Seed," she hopes to help and inspire others who are also dealing with MS. Comments Ally Grant My treatment plan for my RRMS has been HSCT. I underwent the procedure in November 2015 and have seen 95% of my MS symptoms disappear . Fatigue , heat intolerance , bladder/bowl incontinence , balance instability have all disappeared . No way was I going to be stuck taking useless and potentially dangerous drugs for the rest of my life . HSCT didn't come cheap,but it was worth EVERY cent ???? Reply Debi Fantastic News Ally! Thank-you for sharing! Reply Gary Where did you have the procedure done? Reply Ally Grant Hi Gary ???? I had my procedure performed at Clinica Ruiz in Puebla Mexico. It is the ONLY legitimate HSCT facility in Mexico that only began offering this procedure in April 2015 . It already has many people from all over the globe that can attest to the caring and kind way in which they were looked after by all staff at the clinic. Reply Kdali That's awesome Ally! What was it like? Are you off medications now? Congrats on your new life <3 Reply Ally Grant Hi Kdali ???? What was it like ? The chemotherapy didn't affect me too badly and I bounced back quite well from it. No I am not on any MS medications and hopefully will never have to be. http://video.genfb.com/1675475742731670 This is the interview I did about a month after my treatment and since then I have gone from strength to strength. I would NEVER call HSCT a 'cure' because it is not, but since it's the closest thing we have to it at present , I took the chance ... I'm glad that I did ???????? Mary Holmstrand Ally, a couple of questions as I begin my research into HSCT. What was your approach; just applied direct to facility or did you have to get a referral from your current doctor? Are there any criteria that makes a person not eligible? How long were you at the facility? How did you decide on the Mexico location? Thank you so much! Reply Ally grant Hiya Mary ???? Here is a list of all the legitimate HSCT facilities worldwide http://www.hsctstopsms.com/hsct-facilities-worldwide/ I have not heard of anyone being referred by their doctor as most neurologists are dead set against HSCT for whatever reason .. Every facility requires you to apply directly to them via email & or telephone and state that you are seeking HSCT. I chose Mexico because it was among one of the cheaper options ( though still expensive) and they had the quickest waiting period ,and I received my treatment 6 months after applying , whereas Russia the next cheapest option couldn't give me a confirmed date for 2 years .. Too long to wait for me and that is why I chose Puebla. Be aware that each facility also varies in both price and acceptance criteria ( ie: EDSS score) I believe that a new HSCT facility has opened in India that is one of THE cheapest . I have no information regarding this place , but if you google 'HSCT India' it should take you to the website from where you should be able to decide whether it's for you or not. I am now 1 year post HSCT and my EDSS has gone from 4.0-4.5 to 2.0-2.5 which it is at present and I think it is thanks to my dedication to a regular daily exercise routine that this has happened and my physiotherapist believes it will be down to 0 if I continue the way I have been. Please don't mistake HSCT for a 'miracle cure' or a 'quick fix' treatment as it is definitely NOT and will take a lot of hard work to assist with your recovery. I have seen too many people that just come home after HSCT and just wait for "the magic to happen" , unfortunately that's not how it works .. Anyway I wish you the very best of luck on your journey Mary Mary Holmstrand Thank you so much Ally. I watched your story at the link. Very encouraging. I don't know what my EDSS scores are..hmm, I will have to review my chart. I was just dx approx six months ago after having was appeared to be a stroke...then a "possible" brain tumor, and neuro finally decided upon "Tumerfactive MS" as a sub category of RRMS. My lesion looked like a brai tumor, but is not. Affects less than 1% of MS patients. I had no dx of MS prior to the sledge hammer event which iniatlly paralyzed my right side. After confirmation that this "could be tumerfactive", and another round of High dose steroids and LOTS of hard physical work on my part (I am a 23 year military veteran so I subscribe to the warrior ethos!) I am happy to say I have had a remarkable recovery. But the veil of paranoia around possible worsening symptoms and taking DMDs for the rest of my life has sparked "there has got to be a better solution", thus research into HSCT. I have seen some encouraging stories but I respect the science behind HSCT so much more than the vague science behind the DMDs. I thank you again for sharing the information. Pressing on with research.... Megan Farmer I was diagnosed at 22. Had my first attack at 21. After a short course of Copaxone (every other day for about a month), I stopped. Since then, been on no meds except for steroids for the odd flare-up, which I've been testing and guess what - I heal with no medication after a month (which was about the time it took to heal with meds :S) I take Vitamin B complex and Fish oil daily... once I remember. I'll be 31 later this month. The only treatment I'm interested in is a cure, so please don't suggest I try anything else. Reply Lorri Redmon My choice has been to not use any of the DMD's. I have had RRMS for 15ys and used copaxone in the beginning, but the side effects were too hard on me. Since then, I take pain meds for neuropathy and spasticity, 50,000IU VitD weekly, and every so often a migraine pill, I soon will use Hemp CBD Oils, but will switch to Cannabis CBD oil when it becomes legal in my state. I refuse to use IV steroids because of the heinous side effects I get. My thought is that they and even the DMD's are pure poison. Like Megan my thinking is, don't tell me about any treatments, I'm not interested. My Neuro recently told me that I am beating the odds with my MS, even though I am on disability from the fatigue. I can't do more than one large thing more than every third day or so. (groceries, laundry, Dr. appointment....etc) My living situation allows for that though and I am grateful for the people in my life that let me live at the pace I need to. Reply Geoff Flynn Like Ally I had HSCT about a year ago. I'm PPMS, about 7-8 years along. The MS clinic does nothing and recommends nothing and discouraged me from pursuing treatment. A year after and it's stopped the slow steady decline. Some symptoms disappeared right away including chronic pain and fatigue. The rest have remained. It doesn't undo damage for the most part but at least I've stopped getting worse all the time. Reply Mary Holmstrand I'm newly dx RRMS with Tumerfactive sub category (6 months) and have had the most difficult time wrapping my head around doing the meds. I finally succumb to Copaxone after long talk with neuro but have not started it yet; "You need a bubble of protection" she said and "a DMD can give u that". "You know there is an 80% relapse rate and pts have a relapse every other year". But what I want to know is that 80% of pts who are on meds or just MS in general? Second, still have a 30% chance of relapse on meds. Folks, the math does not add up!! Seriously. So, I like Ally, have begun my research into HSCT. It makes way better science sense than modifying my immune system for the next 40 years and it has been used for other conditions for 2+ decades. I want to have the procedure done while Im still young and healthy and will be able to bounce back. I agree with Megan......the only treatment I'm interested in is a cure!! Reply Leave a comment Fill in the required fields to post. Your email address will not be published. Your Name Your Email Your Comment Post Comment
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