Sunday, June 3, 2012
Update on MS Disease
It's been a while since I have posted, and I wanted to give a quick update on how my wife is doing. We have been in Kansas for almost a year, running a Children's Home that is both high stress and little rest. Over the last year she has struggled with minor Multiple Sclerosis symptoms, but has controlled any bigger issues with diet, rest and natural therapies like chiropractic. She isn't having to work full time, but works many hours per week for our Home, along with home schooling our daughter and taking care of our personal home. She is an amazing wife and mom, and this past year has been a year of learning and growing towards more understanding of how diet etc. affects her health.
Over the past 4 months she has lost 28 pounds, and is continuing to lose weight utilizing Weight Watchers. She is combining years of information and studying MS diets with counting points in the WW system. This has worked wonderfully for her, and given her a goal to pursue. She participates in cycling class at least once a week right now, and has been working out as her body will allow. She has become much better at listening to her body over the last few years, and is very aware of when and how far she can push her body. She has done fantastic with her desire to become healthier and lose weight, and I couldn't be more proud of her progress.
Our summer is going to be crazy with all of the activities and events we are participating in for the Home, and we will have to be careful to make sure my wife's MS doesn't rear it's ugly head while we are enjoying our trips. She will need to get plenty of rest, drink lot's of water, make sure her body is eliminating properly, eat healthy, and make sure she doesn't push her body beyond it's limits. For all of those individuals out there that have been recently diagnosed with MS and wonder if you can have a normal life with MS, my wife is a great example of someone that has not allowed her MS to define her life. You can find healing and with some adjustments in your life, you can thrive. Don't ever give up on learning and finding treatments that work for you, and please let us know if there is anything we can do to help you through your journey.
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15 comments:
My mom has been diagnosed with MS recently and your blog is extremely helpful and comforting! Thank you for posting and sharing your and your wife's story!
Thank you so much for sharing this. I am awaiting diagnosis but am putting off my appointment until after my vacation with the kids. I haven't even told my husband yet. I want us to have one last holiday together free of 'it'. But your blog gives me great hope and takes away some of the fear. At the moment I just have vertigo which I can work around. Best wishes for a memorable summer!
Dear cory,
fascinating achievement you both have achieved so far. I am a 30 year old Sri Lankan husband and my wife has been having MS for more than 10 years. for the last 4 years she has been having numerous relapses, and now she has great difficulty in moving around with her spasticity and imbalance.
we have a 3 year old son also. since we live in a country with very few patients with MS, the social support systems are also not established. we have no family support.
It has been an extremely frustrating and depressing couple of years trying to raise our child, facing with the relapses, not being able to go out etc.
We also got to know about the Terry Wahl diet and following it for the last 3 months. additionally we are trying things like a bit of yoga, relaxation therapy and meditation, but with almost no improvement up to now!
Dear Cory, I am also trying my very best as a husband to get my wife going again! But nothing seems to be really working up to now!
please help us!
Glad your back, the blog is huge comfort to me, happy to hear your wife is doing well. I was diagnosed in January this year, and the tingles soon had me out of denial. I've managed to get my dream job which includes travel but I'm so scared but determined to fulfil my ambitions x
I am wondering if you wife is using any CRAB drugs or if you both have chosen to deal with symptoms naturally? I may have missed reading this in an older post, so my apologies.
I found your site today when I was searching for some answers. 13 years ago when I was 24 I started having hearing loss ringing in my ear and dizzy spells. I went to an ENT who told me I had Meniers. I had these spells a few times a year and they would last a couple of days. I kept diarys of my food to see if it was something I was eating setting it off. I also took fluid pills and anivert of which I never got relief, I just had to wait it out. About 3 years ago my spell started lasting longer and I had facial numbness. I was referred to an ENT Surgeron. He told me Meniers doesn't last weeks and the day I went to him I was fine, my spell was over. He said if I really had meniers I wouldn't be able to hear if I really had it for that long. I literally cried in his office. That year I had a couple more spells of which one lasted almost a month. Then I started having problems with my right arm. It feels like I have been working out but I'm not my muscle hurts and I can barely hold anything. Even trying to text hurts. I was then referred to another ENT surgeon who told me Meniers doesn't cause arm pain or facial numbness. He told me to see a Neurologist. I had a brain MRI and went to see the neurologist he said my brain was fine. He said I had silent migraines. Put me on different medicines for about 4 months of which nothing worked. I decided myself they were all guessing. I got off all med and joined a gym and ate right. I felt good for 7 weeks and then the dizzy spells started and my feet and hands started going numb when I tried to exercise. I also starting having feelings like someone is sticking me with a needle in my feet and my hands. I was itching all over like something is biting me. I couldn't sleep anymore. I was tired all the time. I tried to start playing tennis but the dizzy spells would hit me and I got so humiliated and thought I was going to fall. I had to be driven home from the tennis courts. Then in May I had a good day (wasn't dizzy) and went to a couple of stores looking for a bathing suit. Then my legs started feeling weird. Very tired and by that night I couldn't hardly walk. My legs felt like gum and for 3 days I walked funny. Ever since my right leg hurts in the muscle above and below the knee behind my leg. I've tried anti inflamatorys nothing helps. On a family vacation at dinner my right arm just quit working and I couldn't cut my food. I just cried because I was in front of my son. I walk with a limp now and hibernate. I never know when anything is going to hit me and I get so upset when I do. I also just choke for no reason even in my sleep it wakes me up. My husband is a MD and he thinks I have MS but no other dr thinks that because my MRI from a year ago is normal. I honestly feel like I am losing my mind and recently got on anti depressents because I'm crying all the time. I have an appt with another ENT/Neurologist in a few weeks and if he tells me it's nothing I don't know what I'm going to do. I guess I just needed to tell someone my story. I think it makes me feel not so crazy.
Anonymous, sorry it took me so long to post and answer you. I completely understand the struggles and we have been through everything you have described. We have been very fortunate to have family support when we needed it, and I was veracious about finding treatments and therapies that would work for my wife. Keep looking and researching and don't let the setbacks get you down. We tried lots of things to find what has worked for us. If you have any specific questions shoot them to me at mywifehasms@gmail.com.
Josie, thanks for the comment. No, my wife doesn't use any CRAB drugs. I have written a few posts about it, but there are many reasons why. One of the main reasons right now is that we have found natural ways to stop the attacks, and these natural ways don't have side effects. My wife is living as normal of a life as we could ever hope for right now, and we have been able to treat her MS with only natural therapies. If you have specific questions please let me know.
Kristen, thanks for the comment and sharing. My wife also felt that way when she was first going through her diagnosis. She spent months being poked and prodded and everything kept coming back negative. The whole time she was having crazy symptoms and her MRI also showed up negative. There was nothing that pointed to MS for her but the symptoms. After months of this, her family came across Dr. Swank and he was able to get her in quickly. He knew immediately that it was MS, whether the MRI showed it or not. He started treating her and he was the one that set her down the path of treating her MS naturally. I don't know how we can help, but please let me know if you have any questions. Maybe some of our experiences can help you. Hope you are having a better day today.
Dear Cory,
I found your blog and found it very comforting. In the course of your blog I saw that your wife found a doctor that finally dx her with MS but never found anything in her MRI's. How did he come up with his verdict? Of course, now I have to tell my story...Over the years I have had migraines that make my left side go numb which lead to visits to the Neuro. The 1st doc asked if I had MS in my family, but that was that. Of course all of the symptoms went away. Here it is years later, starting with a small patch of Shingles and the whole left side numb/tingling and throw in a few migraines. Very scary so back to the doc in another part of the world. This neuro can't find anything (MRI, Blood tests etc...)but says it "could be" either Lupus or MS. And that's that. I don't have insurance so testing to test is not the road I'd like to go down for now. All of my symptoms point to MS but no dx. It's been 6 weeks and it's getting in the way of life. Can you give me a little more on the diagnoses from the doc you went to? Again, how did he come up with MS if all tests are negative? Because I'm in that boat right now and really want to jump ship.
Cathy, thanks for your comment. My wife's diagnosis was definitely a mess. She was poked and prodded for months and nothing was diagnosed. When she went to see Dr. Roy Swank, he used different tests to determine whether she had MS along with her symptoms. He tested her gait, did a flicker fusion eye exam, checked the tests she had already ran, looked through her symptoms and history and immediately diagnosed her with MS. You have to realize that he had spent years working with hundreds if not thousands of MS patients, and that, I think was the difference. My advice to anyone struggling with diagnosis would be to find a Dr. that specializes in MS. Most of the Neuro's we have met know very little about MS which is one of the reasons we don't currently have a Neuro that my wife sees. Please let me know if you have any other questions, and I hope you find the answers you are looking for.
Living with MS is a collage made up of the stories of lives. MS symptoms, MS progression and the incredible diversity of resources and abilities of those families affected make searching for MS information almost like looking through a kaleidoscope. I always enjoy reading your posts.
Caregivingly Yours, Patrick
Cory, I have found your wonderfully helpful blogs and just want to thank you for sharing your story which in turn is helping so many people. I'm just concerned that you haven't updated for a while and wanted to know if you and your wife are ok?
Hi mjh, yes my wife is doing quite well. We have been overly busy and I just haven't had time to blog. I will have to do better because I have some new things that I need to write about. Thanks for your concern and for reading my blog.
My daughter 22yrs old was diagnosed jan 7 2013 she has been on avonex for a while but has now been given tecfiera . Is any one on here curruntly on these meds ' she has lost 10 lbs within a week '''now down to 70 lbs is weight loss common to ms ?
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