Tuesday, February 23, 2010

First Years With Multiple Sclerosis

The first MS attack my wife remembers was her left arm going numb from her shoulder to her finger tips. During that time, she was going to paralegal school and had recently moved to the Dallas area. She was 20 yrs old at the time. She went to see the doctors and they felt she had carpal tunnel syndrome. They gave her a wrist support and sent her home, diagnosing her with a pinched nerve. For weeks she was numb, then the feeling started to come back. Everyone felt as if this was an isolated incident and not a big deal. Almost a year later, at Thanksgiving, my wife started to have fuzziness in her left eye. This was after a busy day and it came on without warning. She noticed the problem as she tried to drive home and couldn't see well when she was passing cars. She went to bed that night not knowing what the issue was, then woke up the next day blind in that eye.

She immediately went to see the eye doctor and he gave my wife the diagnosis of MS. He explained that he had only seen this issue with patients that had Multiple Sclerosis. My wife's biological mom had been in contact with her adoptive father at the time so he knew that she could have MS. At that time, the doctors were still teaching that MS was not hereditary and my wife was one of the first cases of a mother/daughter with MS. Her eye doctor gave her steroids for the blindness and she was able to regain her sight after a few weeks. My wife was completely blind for a full week this first time before the sight began to come back. About the time that she had regained her sight completely back, her right eye went blind.

This happened the day after Christmas, and seemed to coincide with her menstrual cycle. This time my wife was hospitalized and put through testing for MS. She had an MRI done and a spinal tap. Neither one of these came back positive for MS. The MRI showed no lesions but her parents felt like it was definitely MS. Her father chose at this point to not continue any testing because as a pharmacist, he felt like it was futile. He felt like it was a waste because it wasn't like they could cure or really even help with the drugs that were available then. The doctors started her on steroids and her eyesight began to come back just like it had before.

About that same time my wife's mother attended a Yanni concert. During the concert he spoke about how his daughter was about to give birth, and about how she had MS. My wife's mother approached him after the concert and he took her aside and told her about Dr Roy L Swank. My in-laws called Dr. Swank's office and was lucky enough to get an appointment within a month due to a cancellation and her age. Because she was only 21 at the time, Dr. Swank wanted to see her as quickly as possible. My wife moved back home and went to see Dr. Swank. Dr. Swank confirmed the MS diagnosis and had her start the Swank MS diet. My wife moved back home and began the diet immediately.

For nine months my wife slept and kept a strict diet according to Dr. Swank's book. Right after the blindness issues, my wife had tingling in her legs and problems walking. She also started to have epileptic seizures in her left arm. She had the seizures for about a month, and the doctors had her take seizure medication. The seizures stopped after that month and she has not had any since. The leg issues continued off and on for the first six months after starting the diet. My wife's main memories of that first year of MS were sleeping all the time and being stuck at the house. She remembers how strict the diet was and how worried she was about breaking the diet. She has commented many times about how she was worried about eating a french fry, or potato chip, because it might make her blind. Even when I met her a few years later, she was still strict with her diet and wouldn't cheat due to fear that it would hurt her and cause an MS attack.

After the nine months of sleeping, my wife slowly began to go back to work and continue with her schooling. She continued to have mild MS issues, including fatigue, tingling in her legs/feet, tingling in her arms/hands and headaches. About two years after starting the diet, she went blind for her third time. This time the eye issues started right after rock climbing and hiking all day. About a year later, my wife and I met. I know there are many, many things I am leaving out about those first few years, but maybe this will give a big picture view of my wife's experience. I will try to get into more detail in later posts.

17 comments:

Anonymous said...

You say your wife has been on the Sank diet but you also say she has many disabilities. Am I right and therefore hasn't Swank worked for her?

Thanks

Cory said...

Hey Anonymous, thanks for the comment. Yes, she was on the Swank MS Diet for many years. She has been off the diet for about 9 years now. No, she has no physical disabilities. She has some dimness in one eye, but she has full function of her body and most people are surprised to find out she has MS. She does have MS symptoms and that is mostly what I post on this blog, so I guess it might seem as if she has some disabilities. As far as whether the Swank diet worked, I would say absolutely yes! The research that backs the diet is overwhelming and if I remember right, Dr. Swank told us one time that 85% of the MS patients that follow the diet will live a full life with minimal issues. He had 50+ years and hundreds of patients that he had treated. As with anything, it only works if you follow it, and right now my wife has not been on the diet for years.

Tim said...

Hello. My wife and I live in the Albuquerque area and came across your blog a short time ago. My wife was diagnosed with MS last November and was put on Copaxone for treatment. November brought the first real symptoms for her and they have not really gone away since that time. It started with numbness and tingling in her feet and abdomen which went away after about a month only to be replaced by weakness in the legs and fatigue (which has been persistent over the last 2 months). Her mouth has had some odd sensations and taste oddities, which lasted about a month. Now she is having strange "icy hot" sensations on one side of her face. We have had a difficult time finding others with MS to share experiences or advice with; any suggestions?

Cory said...

Hey Tim, we just moved from Albuquerque about 8 months back. We met quite a few people with MS in ABQ, but the main thing we found was Dr. Kevin Atchley. He helped my wife more than anything else in ABQ. He is a Chiropractor that uses the Pro Adjuster and we have had amazing results from the adjustments. If you contact him, let him know Cory sent you, he is a great guy that will listen and help as he can. Other than him, we really didn't come across anyone that really helped us. I hope you find help since I know it can be a very frustrating time with the new symptoms and ever changing problems. If you have any questions please don't be afraid to ask.

Warin said...

I found your blog today. Thank you.

My wife (of 11 years this may) has relapse-remitting MS. She was diagnosed early (at 18) like your wife. It has been a rollercoaster ride. We deal with many of the same symptoms that you describe. Numbness in arms and legs, constant fatigue, vision issues (Nystagmus and poor vision), throbbing “brain pain” for no reason, restless leg, depression, bladder issues, occasional paralysis/inability to move (and so on). Many find it hard to believe that MS is a potluck of variable ailments all wrapped up into one. Now, at age 32, we have MRI’s with lesions in the brain and spine, scheduled and unscheduled doctor’s appointments etc, etc, etc. Normal every day life is different from everyone else. Stress and exertion are her triggers. When we were first married her condition was very mild, she worked full time, and we almost never had flare-ups, lately its several days per month. Within the last few months, she was approved for SSDI as she can no longer keep regular employment. I myself am having difficulty meeting the demands of my employer. I live in Massachusetts, but I have been wondering if a change in location (and weather) might be a benefit. We live in constant wonder.

It can be lonely, but I just wanted you to know, you aren’t the only one fighting the fight. Thanks again.

Cory said...

Thanks Warin for sharing about your wife. You know exactly what our life is like and that is hard to find. Hope you find some answers for your wife. We eventually started to just educate ourselves so that most of the time now, I know more than the doctors we are seeing. Pretty funny when they start to tell me something that I know is not correct from dealing with the disease for 14 years. Keep searching because the answers are out there, and we have moved for the very same reasons you are thinking about. We have lived in places that made her feel way better, and places that she was constantly having little issues. Right now we are living in an area that has been a struggle and that is hard when we know that there are places she feels great. Please let me know how things go as you try to find the answers.

The Iben's said...

Hello Cory,

I came across your blog last night while researching yet another symptom I am having. I have read a lot of your older posts and feel like your wife and I are one in the same. I was diagnosed at the age of 25 and am currently 30. Thank you for taking the time to tell your story so the rest of use do not feel so alone!

Sarah

Cory said...

Hi Sarah, thanks for the comment. We have tried to be real about all of our struggles and victories, and hope that others can use the information. We totally understand about the feeling of being alone, and please let me know if you have any other questions.

LULU said...

Hello, sorry to read about your Multiple Sclerosis. The symptoms of inhaling the spores from Mold/fungi appear to match the symptoms of MS and more. Can be invisible to the naked eye and hidden in walls etc. Lots on google and google images. Please check this out, it is serious. Can I send you a book? Get Well Soon-Remove The Cause The Effect Will Astound You by United Authors

Cory said...

Hi LULU, we have done a lot of research on mold/fungi issues and the affects on MS. We moved from one house due to this very problem and how it affected my wife. If you have any info you would like to pass on, you can email me at mywifehasms@gmail.com with the info. Thanks!

A. Blair. said...

Thank you so much for sharing your struggles with your wife having MS. I have MS and I am constantly worried about how it affects my husband. I feel such guilt that he works 2x as hard as I do because he has to make up for all my shortcomings. If you don't mind, I am going to direct him in this blog's direction so he can see that he's not alone. Sometimes I feel like no matter what I say/do, I'm worried he feels underappreciated. I'm not sure what to do...hopefully reading this helps.

Cory said...

Hi A.Blair, thanks for the comment. I know my wife feels guilty too, and we talk all the time about how she doesn't need to feel that way. I tell her all the time that I want to do those things for her, and that she just needs to use that energy to take care of herself. Right now, she is taking care of me. I broke my arm last week and she has gone above and beyond to take care of me. Please send him to the blog and if there is anything I can help with just let me know.

Chris said...

WOW. So this is great to see. My name is Chris and my wife was diagnosed with MS in Oct of 09. I had a little knowledge on MS as my cousin unfortunately has a very agressive version of this disease. It has been extremely difficult to cope and deal with. My wife is a very strong willed, free spirit and this has completely taken her out of her element. I am trying to be the very supporting and helpful husband, but as you probably know its been difficult. I also have a very demanding job and cannot fathom loosing it as I am trying to ensure that should my wife no longer be able to work, I can financially sustain us. It is good to know im not the only one.

Cory said...

Hey Chris, thanks for sharing your thoughts and fears. It is very hard and lonely many days, but it is very comforting to know that we are not alone. I have struggled with many of the same things you posted, and our career situation has always been an important struggle. Keep loving on your wife, and thanks again for the comment.

Jeff and Jessica said...

Thanks for the blog information. We are struggling to find answers for my issues. All of the tests have come back negative for ms. How did they end up determining her diagnosis without positive tests?? Symptoms alone, or did something eventually turn up?? I would appreciate any information on her early diagnosis and symptoms, if you will share. May god bless your family.

Cory said...

Jeff and Jessica, thanks for the comment. My wife's diagnosis was probably like many other people out there - frustrating. She had a spinal tap, MRI, multiple other tests and everything kept coming back clear. She had the symptoms including being numb, blind and fatigue, but none of the doctors could diagnose her. Finally, my wife flew to Oregon to see Dr. Swank and he knew that it was MS as soon as he looked over her files and met her. I could share much more, but I'm not sure what would help. If you would like more info shoot me an email at mywifehasms@gmail.com. I hope that you will find the answers you are looking for because my wife and her family knows exactly how long and frustrating that process can be.

Anonymous said...

My wife just got diagnosed with the lesions and all the mental parts you were talking about we are just finding all this out for the first time anything to know?