What have you done since MS possibility came to your life?

Hi everyone ,
I have read many posts from people that have been waiting for a diagnosis for months and even years. I would like for those of you that  unfortunately find themselves in the middle of  this griddlock ( me included) to post the following...

WHAT ARE YOU DOING IN THE MEANTIME?    ARE YOU SEEKING OTHER ALTERNATIVES?  ARE YOU JUST EDUCATING YOURSELF ?  ARE YOU TRYING TO DO OTHER ACTIVITIES, GOING INTO OUT OF POCKET EXPENSES OUTSIDE YOUR INSURANCE?

My intention is to provide a resource of information that is/ could be beneficial during the waiting game in order to attempt a slow down , minimize and /or hopefully halt the progression until a diagnosis is made.
I believe that information is too scattered and having some sort of centralized information is crucial to this and any other life altering condition.
I believe that the human body, its genetic, environmental and nourishing status is different from person to person and this lady MS takes the appearance of many , making it a difficult one to diagnose, but the more info we have, the better equipped we are as well, more to choose from, more to compare, more to research further...and we all win.

Thank you all, and blessings !

Iliana

[COBOB]

I had some symptoms that were there for a few years but thought that they were related to a shoulder surgery in 1987.  From my first case of Optical Neuritis to diagnosis was 9 months.
One month from diagnosis to starting Copaxone.  From some of the stories on the forum, I think that is pretty fast.

I started a symptom time line and then reduced it to the 3 or so major symptoms that effect my ability to function:  I just listed the minor stuff as occasional and intermittent.  It allowed the Neuro to concentrate on the big issues. I think by sticking to the big issues, there was "less noise in the system" and it became easier to figure out the other things that might be going on.   I also had a history of illnesses, surgeries, etc.  And a list of current doctors, including my psychiatrist (ADD.)    Having some kind of mental heath professional as part of your care teams seems to limit the "Conversion Disorder" or "Somatization Disorder" conversation.  

Lots of tests.  Started taking multi vitamins, Sub-lingual B12, D3.  Additional Neurologic symptoms appeared that needed to be treated like Trigeminal Neuralgia (200 mg Tegretol 3 times a day.)   And I tried to build a relationship with the doctor by asking questions and actively listening when he was talking.  I tried to participate in figuring out what test when and explained that there were insurance deductibles and other issue I had to deal with.  By being a participant, I think it improved my medical care, spped to diagnosis and treatment planning.

Bob

[doublevision1]

I am diagnosed with RRMS and never really considered myself in limbo prior to diagnosis.  This is because my initial sensory symptoms, mainly Lhermitte's, wasn't overly bothersome and initial brain and c-spine MRIs didn't indicate any problems.  The Lhermitte's pretty much remitted for over a year.  During that time I knew MS was still a possibility but was probably in denial that it would ever happen to me.  A good friend who is a nurse, gave me good advice after the initial scare, that since I was feeling well it was probably the optimum time to get as healthy as possible - eat better, exercise more, take supplements, get more sleep, and do some research so that if new symptoms arose I'd be more prepared to deal with them.  I didn't really do any of that and if I had that time back, I would.    I do better with all of that now, and it does help me feel better than I otherwise would.  MS or many of its mimics make you feel bad enough, so it's important to do what you can to stay healthier overall while you seek answers and once you've found them.

I will also add, on a much lighter note, that if you foresee a neurological exam in your near future, to get a pedicure!!  I hadn't had one in ages when I saw my new MS specialist for the first time, and my feet were dreadful!  So embarrassing when I was told to remove my socks for the Babinski.  As ill and as scared as I was, I was still vain enough to care about how my feet looked.  As my friend Rendean on this site is aware, my feet earned the title of Fred Flintsone feet by my so amusing spouse.  :)

On a practical note, if you are undiagnosed but believe you may have a serious illness, and are in the US and are uninsured for medical benefits, now my be the time to look into getting insured.  If you`re already in the midst of tests for unexplained symptoms, you might have a problem if the insurance company deems you had a pre-existing condition.  Though with the recent changes in health care policy in the US, this may no longer be a problem - perhaps one of my American counterparts here can speak to this.

[HVAC]

The first thing I did was clean up my diet. It took awhile. I wanted to lose weight so if I had MS I did not have to drag around extra pounds. I also wanted to lessen the likely hood of other diseases and conditions adding more stress to my health and pocket book. In three years I have cut out most processed foods and lost 30 pounds putting me in a good BMI. I do not drink or smoke.

Second I started exercising seriously again. Stretching and walking. I took yoga and started swimming. I was riding my bike but got to wobbly so I started riding horses.

I went to PT to learn strengthening exercises.

All my blood work was great as a result. Of the diet and exercise. Even a 66 Vitamin D level with out supplements.

I went to an acupuncturist and Chinese medicine person because the regular Neurologists were leaving me hanging for two years.  I quit her when I was finally diagnosed because she was against Western Medicine. She used words like "Cure" and was not happy I wanted to try the Drugs to slow Progression.

I got involved in heath care activism since my insurance was going through the roof. It gave me something to focus on instead of just being scared and angry.

I went from Neurologist to Neurologist and every time I hit a dead end I pushed to go to another. It took two years from the first time MS was mentioned but I got an answer.

Oh and getting involved with the Forum. I read an old post when I first came on today and I saw how confused I was.

As soon as I was diagnosed I got involved with the National MS Society. I mistakenly thought I had to be diagnosed to get help from them. The knowledge is power series was very helpful.

Also I did not understand that a PCP can treat symptoms with out a diagnosis. I kept symptoms to myself thinking no one could help.

Alex

[Ojibajo]

I haven't really done anything but live my regular life. It has been a bit overwhelming between symptoms, doctors appts. and worry but life isn't going to stop for me to deal with this.

I would like to improve my diet (more whole foods, etc.) and start a regular exercise regimen but that was a plan before my first MRI.

I would really like to change jobs. My job as a grant funded, pre-college advisor is very stressful. I work a lot of late hours and a lot of weekend hours. I carry a heavy work load and earn a small salary.  My job also requires me to travel to different work sites and do a lot of loading and unloading of materials which is already more tiring than it used to be and I am concerned that it is eventually going to become more and more physically difficult.
I am scared that once (if) I am diagnosed and I change jobs ( I really want to find a full-time teaching job) that I won't be covered by my new insurance especially if the Republicans get their way.

[jujuminx]

I was undx for almost 20 yrs. Even though I knew each time I had episodes of numbness they looked for MS, I was blissfully ignorant that I could have it and them not be able to dx it.  Hum, why do they keep looking for it when each time they can't find it? It must be something else I thought.

Looking back, had I been dx in my late 20's it's probable I would have made a lot of different decisions about the course of my life. Since I am very happy with my life, I am glad I didn't know that I had MS.  I can say this though living with it for 20 yrs and not having any disability or permanent/chronic pain.

Since my dx in August 2010, I have taked much better care of myself (eating clean, whole foods, exercising regularly,  reducing stress in my life and getting plenty of rest). Don't get me wrong, I considered myself a healthy person who took care of herself before dx, the difference now is I take a greater care and I look at it as a necessity rather than a luxury.

Also, maybe b/c I am now in my late 40's rather than my late 20's, I don't take my health or virtual pain-free living for granted.  MS can take away your quality of life in a very short period of time.  I don't take a moment of my life, happiness or health for granted. Each moment I am living with as much joy as I can.

MS has definately changed the way I view my life and has made me appreciate everything more. So I would say if you are in limbo, take extreme care of yourself but don't stress about it, go with the flow. Enjoy life and don't take anything for granted. If you have MS, you have MS, no amount of worrying about it or making yourself crazy about the future will change that.

Julie

[tremors10]

I am one of the "limbolanders" and am currently in the process of getting a second opinion from a diferent neurologist. My PCP thinks I have MS, but the current neurologist would not even consider it an option since my brain MRI was clean and all bloodwork came back clean. He was unwilling to do any other tests.

I really don't know if I have MS, but I am doing many of the things that others have mentioned here - eat well, exercise and maintain a healthy weight. I also don't let piddly stuff bother me since there are more important things in life. This is especially helpful in the workplace.

My PCP recently put me on gabapentin for the nerve pain and I have to say that it really has worked wonders for me. I don't tremor nearly as much, the pins & needles on the right side of my face is much better (though not completely gone) and the random skin pain has dissipated. The only problem is I feel like a space cadet a lot.

Anyway, I'm hoping and praying for some answers as I travel down this long diagnosis road. This forum has been extremely helpful - it seems like people are voicing issues and concerns that I can relate to.  I am very grateful for such a caring community.

[COBOB]

I had some symptoms that were there for a few years but thought that they were related to a shoulder surgery in 1987.  From my first case of Optical Neuritis to diagnosis was 9 months.
One month from diagnosis to starting Copaxone.  From some of the stories on the forum, I think that is pretty fast.

I started a symptom time line and then reduced it to the 3 or so major symptoms that effect my ability to function:  I just listed the minor stuff as occasional and intermittent.  It allowed the Neuro to concentrate on the big issues. I think by sticking to the big issues, there was "less noise in the system" and it became easier to figure out the other things that might be going on.   I also had a history of illnesses, surgeries, etc.  And a list of current doctors, including my psychiatrist (ADD.)    Having some kind of mental heath professional as part of your care teams seems to limit the "Conversion Disorder" or "Somatization Disorder" conversation.  

Lots of tests.  Started taking multi vitamins, Sub-lingual B12, D3.  Additional Neurologic symptoms appeared that needed to be treated like Trigeminal Neuralgia (200 mg Tegretol 3 times a day.)   And I tried to build a relationship with the doctor by asking questions and actively listening when he was talking.  I tried to participate in figuring out what test when and explained that there were insurance deductibles and other issue I had to deal with.  By being a participant, I think it improved my medical care, spped to diagnosis and treatment planning.

Bob

[maestro1959]

I initially went to a neurologist because I had been assaulted by a student while teaching in Novemember 2009.  I was having severe balance problems and horrible headaches.  My Primary Care Physician assumed it was all because of the closed head injury I incurred from being thrown into a wall.  It was February 2010 when I had my first visit.

By the time I got in to see the neurologist I had begun having gait problems and bi-lateral footdrop.  He right away said he suspected MS, and immediately ordered a brain MRI which showed about 40 lesions.  That was July 2010.  All the other typical tests for MS were performed, and on January 18th he gave the final diagnosis of Primary Progressive MS.

During this waiting period I have been in constant PT, mostly for the balance issues.  I have also worked with a new device to keep my leg muscles strong while working on the footdrop.  I have also worked on losing weight.  My problem is that I have deteriorated very quickly, and am now in a wheelchair except inside my home.  Even so, my PT continues.

The majority of the changes I have made have been in my attitude.  I am determined not to let this take me down, and for a few reasons.  First, it does me no good to just give in and quit fighting this disease.  It is going to do its thing whether I give in or not.  So, to fight gives me a sense of control.  My mantra is "What does not kill me makes me stronger."   That means taking my meds and following the doctors' orders.  Second, I will not allow this to make me angry because as soon as I do, it again has control over me.  If I just become Miss Crankypants I end up pushing people away, and that is the last thing I want or need.  Lastly, I have a faith that tells me that "ALL things work together for good to those who love God and are called according to His purpose."  Please do not be offended if you do not have the same belief as I, but I hold on to the idea that this has a purpose in my life.  I do not see it now, but I am determined to keep searching until I know what it is.  If that comes to nothing, at least I have stayed positive during what could be a very negative time in my life.  It keeps me going.

Beth

[ladyi82]

I am speechless with gratitude for the sharing of your story......THANK YOU ALL .... and Beth, not offended at all...completely agree !

;) Iliana

[territorial]

Hello. I am still in limbo land.

Years ago the MS bug was put in my ear when a resident neurologist thought they saw something wonky with my rt optic nerve. WHAT?  MS was the farthest thing from my mind I was being seen by a neurologist for some sensations of water being dripped on my feet and some neck pain. The optic nerve thing turned out to be nothing. The sensation and the pain went away and I thought nothing of it again until this past November when my left side (arm/leg/face) went numb, still had the strength, just felt cold from the inside out and tingly. Urgent MRI showed at least six lesions  but they did not conform to a diagnosis, whatever that means LOL

I am dealing with my second bout of symptoms since November. The tingles again, what I think was an MS hug that lasted over a week, and super sensitive skin that feels like it is being burned. Lyrica is helping a bit.

Anyhow, since MS may just be in my future I have really tried to live healthier. I have started going to the gym at my workplace on my lunch breaks to just clear my head and shed some pounds. I too don't want to have to deal with excess weight if this all goes bad. I have started Yoga too, another way to clear my head.  With my two young kids and my hubby at home, I really want to focus on being positive and leading by example by taking care of me.

My husband, though scared at what the future might bring, is happy that I am keeping so positive. I think I am just getting on to the roller coaster now, safety belt has been fastened and away we go....time will tell how it all turns out.

[HoustonDogLove]

Everyone, I love all the positive things you are doing, I am trying to do the same. And all these wonderful post's make me want to cry with happiness.

This is a great group, and I am happy to be here.
It's easy to focus on the negative, but it truly shows how strong we are when we are able to conquer these little battles such as eating healthy and getting involved in life going to yoga, just taking a walk or roll around the block.

I am really praying for the pre-existing condition clause to stick because I would also like to find a better job without fear of loosing my health insurance. I am only 27just graduated from college and still have quite the employment ladder to climb so I DON'T have to rely on public health insurance. Luckily I was grandfathered into insurance because a new owner bought out our veterinary practice and he needed people to get onto the group plan. I just barely had insurance by the skin of my teeth...and now I have this chronic condition...the insurance is still fighting my claims because they already feel like I have a pre-existing condition even thought I have had insurance since June/July and never had any symptoms until October/November. I feel like I am stuck in the mud sometimes, and it can be scary.

[johnnymutt]

I've actually just been waiting until my Neuro's appointment at OSU. I am probably putting to much into going there, but I know that they have some great docs, and will most likely find something, one way or the other. I've also been searching out other doctors, which can load me down with information and testing that will help speed up the process. So far, ALS and MD have been eliminated, which is a great relief.

I've been missing a great deal of work lately due to the pain in my muscles, and these darn sharp spikes in my right foot. I'm on Cymbalta now, which seemed to work at first for my spasticity, but no longer helps. However it is great for my TN which was a major player in this game.

One thing this whole thing has taught me, is patients. I don't get to exited about new or relapsing symptoms when they come. I take my beating and keep walking the good walk.

Have a great weekend
Johnny D