Saturday, December 1, 2012

Stresses of Multiple Sclerosis Diagnosis

If you have been diagnosed with Multiple Sclerosis or are going through the testing now to figure out exactly what's causing your symptoms, then you know that this process can be stressful, frustrating and long.  When my wife first started the testing for her MS over 20 years ago, she felt like a lab rat.  They ran test after test and everything kept coming back negative.  If you're knowledgeable about how MS is diagnosed, then you know that there isn't a single test or even a battery of tests that will give a clear diagnosis.  My wife had MRI's, a spinal tap, blood testing etc. and everything kept coming back negative.  Even her MRI showed no spots or issues, but all of her symptoms pointed to MS.

I'm not a doctor, and this is not medical advise so please don't take it as such.  What I'm writing this for is all of those individuals out there that are frustrated and stressed out because they've spent months and months trying to figure out what is causing their fatigue, numbness, tingling, pain or whatever other symptom they may have.  My wife saw multiple neurologists and no one would diagnose her with MS until she went to see Dr Roy L Swank in Oregon.  Dr. Swank spent years and years researching MS and he developed the Swank MS diet to combat the effects of MS.  During her first visit to his clinic he immediately diagnosed her and put her on the diet.  We both really wish Dr. Swank was still alive and practicing because his treatment and counsel helped us through many rough spots with my wife's health.

Here is what I have learned about the diagnosis of MS.  Since there is no definitive test, the diagnosis is based on the symptoms and multiple testing that is done.  In other words, MS is a collection of specific symptoms and can be very difficult to diagnosis.  The other thing I learned when we ran a Naturopathic Doctor's office was natural treatment of diet, rest, supplements etc. can do amazing things for auto immune diseases like MS.  Starting a healthy diet can happen today and is something that anyone can do to make their health better.  Our Naturopathic Doctor really believed in the Breaking the Vicious Cycle diet for Auto Immune diseases.  We were able to see the successes of this diet and used it ourselves for some time.  I say all of this to say don't get depressed, frustrated and feel like you have no control because in our experience, anyone can better their health with a few simple things like diet and limiting stress in their life.  My wife completely understands the desperation that can come from wanting to know what is causing her health issues, and over time we have decided to take control of what we can and not stress about what we have no control over.  Take control of what you can today like diet, rest and limiting stress in your life and know that it can get better.  My wife is a living testament to this.

9 comments:

Anonymous said...

Hello,
So your wife is on the swank diet. Do you follow the diet as well?
Cindy

Cory said...

Hi Cindy,
My wife has been on and off the Swank diet for years, and is currently off the diet. She was consistent with it for years then stopped the diet due to our job. We saw Dr Swank for years and know his diet truly helped my wife. We have also used the "Breaking the Vicious Cycle" diet and had very positive results. I did not follow the diet when she was on it but was able to tweak the recipes for me and my daughter. Please let me know if you have any other questions, and thanks for your comment.

Anonymous said...

Cory, thank you for your post. I am currently going through this with my wife and we have been seeing multiple specialists for the past year - with still no diagnosis, (even though the symptoms all point to MS).

I guess I am wondering how / what you did mentally, (as the spouse and father), to get through these times? We have 2 daughters age 8 and 11 and there are days when I get so frustrated at her situation, even though I know it is 10 million times harder on her.

I guess I am just curious how you are / were able to look at this philosophically or how you handled the personal emotions of it.

Thanks for sharing!

Justin

Cory said...

Hey Justin,
Sorry it took me a few days to reply. There have definitely been days that I have been frustrated, and like you stated, my frustration is only a fraction of how my wife feels. I think the frustration was probably worse when we didn't feel we had any control over her health but now we know what to do to stop an attack and help her feel better. We learned pretty quickly that we needed to live differently or we would definitely be frustrated because there are days that we have to shut our whole life down for her health. Since I know that, it's not as big a deal anymore, and we adjust as we need to. I guess having more control over her health and realizing that we have to be flexible has changed my expectations which in turn has changed my frustration level. I hope that helps, and if you have any other questions you are welcome to shoot me an email at mywifehasms@gmail.com.

Anonymous said...

Hi Cory,

I am going thru this same path now. Had my first double vision in Feb and MRI shown 3 white matters in 2 locations of the brain. CSF negative. Treated with I.v steroid for 5 days. While I thought it could be a one off problem, I got my 2 nd attacks in less than 8 weeks (2 weeks ago) and this time round MrI shown a new enhancing lesion. Treated with IVIG n double the steroid dosage n hospitalized for a week.

There is lack of or no MS specialist in my country (Malaysia). My treating neurologist suggests me to go on Betaferon to delay the relapse while another neurologist told me to wait for 3 rd attack before he will do anything. Hate this waiting game.

I am flying off to Australia for 3rd opinion and move on from there. I just had a baby 7mths ago and I really feel very sorry for him. He will never get the same attentions from me like his sister (4yos) due to MS.

I am an investment banker n now I m not sure whether I can continue with my job, I love my job n I need my job to pay for the medical expenses as Malaysua doesn't have good free healthcare like in US or Australia.

Luckily my Hubby is very supportive n I told him to read your blog n learn. More challenge ahead of us.

Will follow your blog from now on.

Thanks & regards
Sharon

Kaye R said...

I have enjoyed reading your blog, Cory. Also, the comments made by others. I have been through so many of the same things. My first attack was 30 years ago, second 21 years ago and then diagnosed 1998. 1992 I went through most of the test mentioned. Finally, MRI IN 1998. The first book I read was Dr Roy Swank and then in 1999, Prof. George Jelinek who wrote Recovering from MS. He went even further with diet using Prof. Swank's studies. I have followed his diet etc. since. He was diagnosed with MS in 1999. Overcoming MS is his website and he now has a new book out - Recovering from MS. Worth a read if you do not already know about his story. I will keep following your blog.
Cheers, Kaye

Cory said...

Thanks for the additional info Kaye!

Sam J. said...

I will bookmark this blog and appreciate the candor and optimism. My wife Lucille, age 49, and a grammar school principal in New Jersey was diagnosed two weeks ago during tests taken in a hospital after she was taken there for numbness on the side of her face, a droopy eye and slight numbness of upper arm. We feared some kind of a mini-stroke, but were given the news of MS after about a dozen lesions were found, some on the usual spots above the brain. We have five kids, ages 17, 16, 14, 12 and 11. The fear, heart break, and devastation is too difficult to relate here. We were told not to even think of cancelling our two week trip to the U.K. (long-planned) as that venture would give everyone some time to enjoy and think positive. When we get back we have a great neurologist lined up.

But until I speak to that doctor I remain terrified. My wife's diagnosis at 49 is frightening because on line it seems to assert that most patients between 40 and 49 have the worst case if I am reading this right. Lucille may not in the end, but she falls in that sub-category. These are trying times.

Cory said...

Sam, thank you for your comment. I'm sorry to hear about your wife's diagnosis. I know how scary it can be, and have been thru quite a few scares through the years. We took a different route with my wife's treatment, and decided to treat all natural if possible. My wife actually stopped going to MS groups and looking online because of all of the negativity and she felt like she would do better focusing on the positive. We were told a few years ago that my wife would head downhill and that all of the things we were doing were just coincidence because she was getting better. Well, after years of treating her MS naturally she is still doing great and able to live life fully. Please let me know if you have any questions and know that you are not alone in this.