Multiple Sclerosis vs My DW

[Grizz]

Got some life altering news 2 weeks ago. While my DW still needs an MRI for 100% confirmation, the neurologist has told us that she strongly suspects MS. The point of this post isn't to host a pity party though. We are of course still somewhat in shock/grief mode, but I think we are finally running out of tears and have begun what promises to be a decades long battle for quality of life, and one that has made us consider a few other possibilities in our ER planning.

In typically male fashion I've spent hours studying and learning in order to somehow fix this thing, and unfortunately as for now there is no cure. What i can do though is provide a brief education, and give my fellow forum members info that might prevent their families from experiencing it, or at least to provide awareness so that they might consider that the person who appears to be drunk and is slurring their words may just have MS. (a good friend with MS is afflicted in this way and is very self conscious of it)

MS attacks the nervous system. The body's own immune system attacks the insulation that surrounds nerves in the brain and spine. This causes a multitude of changing symptoms to come and go. These include blindness, pins and needles or burning sensations in the limbs, bladder control issues, balance problems, cognitive troubles, paralysis, slurred speech, depression, heat sensitivity, extreme fatigue, and others. MS almost always gets worse over time, but depending on the subtype of MS, these can be issues that go into remission for a while, or just progressively become worse with time eventually leading to serious disability.

The seeds are sown in childhood, but symptoms usually don't arise until 20-40 yrs old. DW is 38.

As for now there isn't a cure, but there have been enough statistical studies to know who is at higher odds of having it. Here's the list, and unfortunately my DW has a check beside them all...

- being female (3:1 ratio)
- family history (her aunt)
- living in northern or southern part of the globe. The further from the equator, the greater the incidence. (lack of vitamin D due to lack of sunlight)
- living inland with a diet mostly consisting of milk, grains, beef, pork. (very low MS rates in northern fishing communities, fish are high in vitamin D)
- being Caucasian and of northern European descent

The good news is that a very restrictive diet with vitamin supplements has shown great promise in slowing progression of the disease, this is backed by a 50yr long study. Just google "best bet diet" for more info. Luckily DW has been an exercise and diet nut for at least 10 yrs so the transition might not be as tough for her.

More good news is that the "Liberation" treatment where angioplasty is done on veins leaving the brain has shown incredible (though anecdotal) results in some, but lots more studies needed on this.

We believe that stem cell research is likely where the greatest promise lies.

The drug companies keep churning out new drugs to deal with the symptoms, but not the progression of the disease. Side effects can be brutal.

Fortunately my wife is the most headstrong, positive, caring and outgoing person you'd likely ever meet. It really isn't fair that she'd get MS, but I do believe that in life we are given only what we can handle, and if anyone can put up a fight and stay positive throughout, it's my DW.

 

[W2R]

I am sorry to hear that your DW has had this diagnosis.

As you have pointed out, something to keep in mind is that whereas MS can be a brutal, cruel condition, it is also a condition often typified by exacerbations and remissions. The remissions can even be nearly complete sometimes. Also, since the MRI was developed I suspect that more cases of M.S. are being identified than ever before. I had a clinical diagnosis of M.S. from a battery of top neurologists almost 40 years ago, confirmed through the years by further clinical examinations and re-confirmed by the CAT-scan and then by the MRI when these devices were developed. I had some very scary and severe symptom back then, frequently and for decades, and was given a very bad prognosis. However, despite taking no medications whatsoever for it, for no discernable reason during the past 20 years I have not had any symptoms other than a very little residual paresthesia and weakness in my left arm (so I am right handed now instead of ambidextrous, not a big deal). Basically, I "won the lottery" I guess. That is not to say that your wife will or will not be as fortunate; I have no idea. Just wanted to point out that anything can happen.

It is difficult not to dread the unknown. But I think the best advice (beyond self-educating, and taking advantage of everything modern medicine has to offer, as you two have obviously done) is for her to let it go as much as she can, and to live her life to the fullest and enjoy every moment, as best as she can.

Oh, and I am editing to add my suggestion that it is best to be very skeptical of any new advances or possible but unconfirmed treatments discussed in the popular media. Since M.S. often does have an unpredictable course, improvements can sometimes occur that seem to be due to a treatment when really they might have happened anyway. Often new treatments turn out to be no good after large scale controlled experimentation has been completed, if it is even attempted. I have seen a zillion of these suggested with great hope that have since been abandoned.

 

[Koogie]

Sorry to hear that. We are in a similar boat as my wife has a hereditary disease which is practically identical to MS (spinocerebellar ataxia).
She was diagnosed 10 years ago when she was 36 and I was 29. As strong a woman as she probably is, your wife will need extra patience and compassion as the symptoms manifest themselves. Be very vigilant about the onset of depression as well. Having an incurable, debilitating disease hanging over your head is something no one else, including spouses, can understand. I still struggle.
Be optimistic but cautious about exploring the perceived hope about Stem Cell research (or perhaps liberation therapy). We have heard both miraculous stories and horrible experiences from people in the Ataxia community regarding their pursuit of Stem Cell injection therapy.
Lastly, what about FIRE? How does this affect the reality of your plans ? It is something we struggle with approaching, with an uncertain medical future looming.

 

[eytonxav]

Sorry to hear about this. We recently found out DW has Celiac disease which is also requiring a lot of discipline from a diet perspective.

 

[Bestwifeever]

I'm sorry to hear this. I hope your DW's symptoms are manageable and the progression is slow as it has been for DH's cousin.

Your wife is lucky to have you in her corner!!!!

 

[mystang52]

My best wishes to you and your DW. I commend you for your (and apparently DW's) great spirit.

 

[rgarling]

Have you seen: Dr. Wahls' TEDx Talk on Overcoming MS - The Wahls Foundation

a good place to start designing your action plan...

 

[hakuna matata]

My wife has MS as well, she has known for about 10-12 years now. I knew she had MS when I married her, and I will admit it was a consideration to take into account, but you know when you love someone, you just go along with whatever life has to offer you. MS is such an odd disease anyways, you can be fine one day, and in a wheelchair next week, and fine two months later. Very strange disease.

My wife though has a great attitude and overall hasn't suffered much with it, with the exception of maybe the last year. She is 52 now. And now I have noticed that she gets tired easier and I notice that she only has 'so' much energy and so we tailor our events along that energy path. However she still goes to the gym and does walking and the elliptical, still does her gardening, and still works full time. She needs her rest, and often takes an afternoon nap which does energize her again. But until recently she wasn't sure if it was the MS or just getting old! I think that is the thing overall that drives her crazy is not knowing if some pain or tiredness if from the MS or just life.


She does a weekly shot and now started a new drug that includes a daily pill. She has also met a very nice lady who also has MS and having a friend who can relate to your issues has been extremely helpful for her. Her friend has the same attitude as my wife--no pity parties. My wife said she boo-hooed for a few days, and then moved on. She doesnt' want to be defined by the disease and so far has taken control of her life.


I first noticed a degradation this last winter when we went to San Diego on vacation. We had done the same trip about 3 years ago and her energy levels had dropped considerably since that trip. I ended up buying her a collapsable cane while there and she has found the cane is a good tool for her. She doesn't need it to walk, but it helps her stabilize, etc.


So good luck to you both--feel free to email me, of if your wife needs someone to talk to, I am quite sure my wife would talk to her. It is a tough disease and scary, but it isn't a death sentence or the end of your life. Each person is impacted differently and sometimes you just deal the hand you get. So hang in there and Good luck.

 

[studbucket]

Sorry to hear that, I lost my father 6 years ago, and he'd had really bad MS his entire life. Used to be a professional skier, but I never got to see that, just a guy in an electric wheelchair.

Best of luck, and I don't have anything to offer over the research you did.

 

[Grizz]

This I really incredible to me. I thought that MS was such a rarity that almost nobody would have known much about it, let alone had it directly affect their own lives.

Thank you all for the encouragement, advice, and offerings of help.

In terms of how it affects FIRE, well, of course that remains to be seen. It certainly got pushed upward on the "to do" list because as was said many times you just don't know how your particular MS journey will progress, and we have some great plans involving travel and staying in foreign lands through our cold Canadian winters.

We've been fortunate that my business has been successful and DW only works 3 days / week, at a mediocre paying job mostly for something to do. If forced to quit due to MS, the financial hit would be minor. Its weird to say it at 43, but money has now taken a back seat to time. I get at least 2 or 3 inquiries per year from companies looking to buy my business. I'll now pay more attention to these inquiries.

 

[hakuna matata]

One item--Do NOT lose your insurance coverage. That is one issue, MS is an expensive disease to treat. We pay a $100 copay each month on her monthly shot, but the meds themselves are like $4500 a month! I saw the invoice one day and almost fell on the floor. I was very thankful that we have good insurance coverage.

 

[JOHNNIE36]

Grizz, sorry to hear of the diagnosis for your wife. Reading all the posts is interesting and will chime in with my two cents worth. Our daughter got MS in 1997 when she was 33. Has had her ups and downs ever since but mostly ups, thank God, and she's still doing well to this day. Thanks to all the medications, she has endured the trials and tribulations that everyone with MS goes through. Through the years she was on Beta Ceron, Rebif and Capoxon (excuse spelling). I think those were all X# of shots per day.

She has taken every drug invented for MS and is now on the new medicine called Gilenya. She is under the care of doctors at University of South Florida here in Tampa where they have a staff devoted to MS. She took the shots for years, went through the national study on Gilenya and is now on that exclusively. One pill a day takes care of her. No more shots. She is really happy with Gilenya. Could be your wife will never even get to that stage as MS is such a goofy thing as mentioned. One day you're up-next day you're down. Gets tired during the day, takes a two hour nap, then feels great. Has a slight limp and left side is weak. Can't pick up a gallon of milk. But, drives a car, takes care of six dogs and four parrots and is generally a happy person. Make no mistake, attitude is a big plus. She had two sons to raise and she wasn't going to let MS get the best of her.

I just talked to her on the phone and she said she would be glad to give your wife her email address should she ever want to just talk. Best wishes to you and your wife.

 

[PawPrint53]

I'm so sorry. I don't know if this will help or hurt, but my neurologist strongly suspected MS after a lot of confirming symptoms including MRI results. But it turns out I don't. I can only hope that will happen for your wife. And if she does, from what so many people have posted, there are quite a few things that can help. My thoughts are with you.

 

[Moemg]

I am amazed at all the men dealing with this and doing an amazing job ! You are my hero's!

 

[Retch The Grate]

Sorry for you and your wife, it sounds like you both have a great attitude for confronting the issue and managing her illness.

 

[Grizz]

To those who have offered to communicate directly with DW, your kindness is deeply appreciated. Eventually we also hope to help any newly diagnosed or even those bracing for a diagnosis.

We have the dubious distinction of living in the epicenter of MS. Alberta, Canada has far and away the highest per capita rate of MS in the world at 330/100,000. Almost everyone in the province has been touched by MS to some extent. I actually would have thought the ratio to be much higher as we personally know 6 people in various stages of MS, one relative and 5 friends. DW has already received support and advice from most of them.

Ironically, up until about 3 years ago, DW's family was highly involved in organizing a horseback trail ride for MS for at least 10 yrs that raised hundreds of thousands of dollars. At first they raised only a few thousand each year and would identify some people with MS who could use help, and they would buy a powered bed or wheelchair or whatever was needed to make life easier.

The unfortunate part is that once the ride grew and became really lucrative, the MS Society got involved and started making demands for a huge portion of money raised to go to administration at the charity. It's really sad as this was discouraging and in large part killed a great event. When one looks at the actual percentage of money raised for the MS Society in Canada that goes toward research into treatments, it's truly disappointing. A couple of years ago DW and I found a different MS charity to support.

 

[flyfishnevada]

Sorry to hear about the diagnosis, but it sounds like you both have the right attitude. I had no idea that MS was linked to vitamin D. Strange, not enough sun leads to MS, too much leads to skin cancer. I don't know anyone with MS or even anyone that knows anyone with MS, but getting enough sun in Nevada is not a problem. Maybe that's why.

I hope you guys find some balance with the disease (actually I hope your doctor is wrong, but...). Attitude seems to be the key. Good luck and I wish you the best.

 

[Meadbh]

Sorry to hear about this and I wish all the best for Mrs Grizz and everyone else on the forum touched by this maddening disease. It's great to see everyone rallying round and offering support.

 

[kumquat]

My sympathies grizz,

I'm in Sk. (which I was led to believe is the MS capital of the world), I'm sure Ab. is the similar. Anyway, since DB was diagnosed 4-5 years ago, I've done a bit of research. There are 4 kinds of MS. Which does your DW have? DB has PPMS, the worst and has probably gone downhill faster than 90 percent of his peers. Your DW is likely to have a far better prognosis.

As to the "liberation" treatment, I'm quite sceptical. I always was but since DB and SIL thought it might work I paid for two tries. While there may have been a brief (read 3 week) placebo effect, nothing good happened. If your DW has something other than PPMS, or if DB was an anomoly, YMMV.

Like the others, feel free to PM me. I'll tell you what I can.

 

[chris2008]

All the best to DW and all your family. Enjoy life to the fullest.

It is hard to see a loved one in a disease without cure. DH has CMT, so far only slight problems with walking on uneven surface.

 

[teejayevans]

Sorry to hear about that, I think the prognosis is much better today then it used to be...look at Ann Romney, she was diagnosed 15 years ago.
TJ

 

[Lsbcal]

Grizz, I learned something about MS from you today. Sounds like you and your DW have the right frame of mind going forward. Best of luck on this!

 

[MBAustin]

As you have already seen, MS is much more common than many people realize. DH was officially diagnosed in 1999 at 47 but had symptoms back as early as 1987 and maybe earlier. He retired on disability in 2006, primarily due to fatigue issues. He has not been able to walk since 2008, and uses a scooter and power wheelchair to get around. But he is a deacon at our church, an ESL teacher, and does various other volunteer projects. He has an amazing attitude about everything, which I think makes all the difference.

He tried several of the disease-modifiying drugs with no noticeable impact, and has participated in two clinical trials. At this point, he is not on any treatment medication although his neurologist keeps up with the new drugs to see if anything might be worth trying.

The biggest thing, as others have said, is that everyone's disease course is different. Find a good neurologist and go from there, one day at a time.

All the best to both of you!

 

[Grizz]

My sympathies grizz,

I'm in Sk. (which I was led to believe is the MS capital of the world), I'm sure Ab. is the similar. Anyway, since DB was diagnosed 4-5 years ago, I've done a bit of research. There are 4 kinds of MS. Which does your DW have? DB has PPMS, the worst and has probably gone downhill faster than 90 percent of his peers. Your DW is likely to have a far better prognosis.

As to the "liberation" treatment, I'm quite sceptical. I always was but since DB and SIL thought it might work I paid for two tries. While there may have been a brief (read 3 week) placebo effect, nothing good happened. If your DW has something other than PPMS, or if DB was an anomoly, YMMV.

Like the others, feel free to PM me. I'll tell you what I can.

As you can imagine, PPMS is our greatest fear as my wife's aunt has moved from RRMS into SPMS (secondary progressive) which if I understand correctly, is really similar to your DB's condition, and has switched to a much accelerated and aggressive form of MS.

Saskatchewan does indeed share the title with Alberta. Take a look at direct-ms.org. There's a map somewhere in there that shows the worldwide distribution. I believe it's in an article titled "The Alberta Disadvantage".

The neurologist believes that she has RRMS (relapsing remitting), which, if she's right, means that DW's symptoms will come and go on no set schedule, but eventually and progressively get worse, leaving behind a trail of nerve damage and potential disability with each flare up of symptoms.

The neurologist is only basing her guess that it is RRMS on statistics and the type of symptoms shown so far. Unfortunately the symptoms have been hanging around for almost 10 weeks so far, but do seem to be improving somewhat overall.

For now it's diet, rest, education, and hope.

BTW, where was the "Liberation Therapy" performed, and if I may ask, what was the cost each time? I'm mostly curious if the second try is less costly than the first.

 

[kumquat]

BTW, where was the "Liberation Therapy" performed, and if I may ask, what was the cost each time? I'm mostly curious if the second try is less costly than the first.

The initial one was in Sophia, Bulgaria and cost about $6,500 plus transportation and living costs for his wife and son who accompanied him. Second was also Sophia, can't find records but I seem to remember it being cheaper.