Just Diagnosed, Not sure what to do about my work

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Just Diagnosed, Not sure what to do about my work

Postby ashleycanada » Tue Feb 25, 2014 6:49 pm

Hi Everyone,

I am 27yr old female and I was just diagnosed with MS on Thursday Feb 20th, 2014. I had my first event in Mary 2013 which manifested as sudden buzzing in my feet, that spread all the way up to my thighs in a couple of days, and was the same in both legs. After my doctor did everything she could for me, which consisted of requesting an MRI, blood test & some neurodiagnostic testing, I went home disappointed that there were no suggestions about what I could do about my symptoms (which at the time I didn't know were related to MS).

After 3 weeks of the buzzing I had had enough and I sought out treatment from a Chinese Medicine Doctor who performed deep & penetrative massage on my feet and calves. It was very painful but I instantly felt relief from the buzzing and in a matter of a few visits all the buzzing had disappeared and has not returned. Needless to say, many months later after many tests, I was very crushed when my diagnosis came back as MS.

However, after learning more about the disease I am feeling very optimistic about my future. My Husband (aka my hero) and I plan on going gluten/dairy/sugar free (something we have thought about doing anyways). My diagnosis is also so preliminary and so subtle that doctors were optimistic that my quality of life would be good if I got on meds right away (something I am not sure about because I hate big pharma).

Anyways, my current situation is that I was just appointed as Executive Director (one month before my dx) for a small non-profit, which is a very demanding and stressful job. Knowing that managing stress and having a good work-life balance are critical for prevention of future symptoms I am worried that I should consider leaving my job - which I love by the way even though it may be one of the reasons I had these symptoms in the first place. Has anyone been in a situation where they had to choose their health over their job and how they went about it? I am thinking about telling my board of directors but I worry that they might discriminate against me and not renew my contract. I could quit now without much explanation, but that would be so mysterious and I might sever many connections. I would love to drop down to part-time so I can invest some time in getting my lifestyle on track and I have been feeling exhausted anyways and could use a break to re-coup.

Any advice out there? Can anyone relate to this dilemma?

Much love to all of you and thank you for taking the time to respond.

Ashley
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Re: Just Diagnosed, Not sure what to do about my work

Postby jimmylegs » Tue Feb 25, 2014 8:31 pm

hi Ashley and welcome :D I would say take the job you love and run with it for as long as you can.

personally I went back to work (teaching skiing!?!) in the middle of my first (only, so far) relapse, and they made the accommodations I needed. since then i have worked to achieve new certifications and the only reason I'm not on snow full time this winter is b/c i blew my ACL at the end of last season.

definitely read as much as you can, so that you can make informed decisions about the options. (I started out pro meds but changed my mind after reading up - but that's just me)

there are TONS of resources available to help you manage stress. one aspect, nutritional support, (my fave!) is key for ms patients and anyone else who wants to manage stress well and have a healthy immune system into the bargain.

have any of the docs sent you for nutrition testing to see if you match a typical ms patient in the nutrient status sense? if so, do you have your own copy of results? if not, that's a good piece of information to have at your disposal to help guide your day to day decisions about food.

gluten dairy and sugar avoidance can protect but not necessarily heal a fragile immune system. gluten avoidance can prevent the nutrient drain associated with consumption. but it can't replace chronically depleted nutrients, if those are in the picture for you.

not to worry - lots of info here on good nutritional support for ms, for stress, for lots of things :)

again, welcome to the forum!
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Re: Just Diagnosed, Not sure what to do about my work

Postby CaliReader » Wed Feb 26, 2014 9:31 am

It is good that you are thinking about these questions. That said, I had symptoms at 23, but didn't start to feel impaired until mid 40's. You can plan for different outcomes, but don't quit yet.
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Re: Just Diagnosed, Not sure what to do about my work

Postby ElliotB » Wed Feb 26, 2014 3:24 pm

Greatly reducing and/or eliminating all stress from your life is paramount to your long term health success. The ultimate decision is up to you. Part time, no stress sounds pretty good!
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Re: Just Diagnosed, Not sure what to do about my work

Postby daverestonvirginia » Thu Feb 27, 2014 12:33 pm

Ashley, just being diagnosed with MS is a tough place to be. I have been there and I think my first advice would be to take some time to make decisions. I also was worried about the stressful job I had, should I stay in it, I needed and wanted to work. I spent quite a bit of time searching the internet and decided on the Best Bet Diet and Copaxone and staying at my job. So far it has all worked out for me, I am doing great, I did end up switching jobs at some point but not because of MS. No one really knows how the MS will progress, but if you take positive action I believe it helps. It has been over 8 years since my dx and I believe I am in better shape (diet and exercise) than when I was dx. Dave
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Re: Just Diagnosed, Not sure what to do about my work

Postby vesta » Thu Feb 27, 2014 4:04 pm

Ashley: Chinese médicine works on the blood/CSF fluid circulation through the brain and I have been able to keep MS under control using Tens self acupressure and occasional acupuncture treatments. If I had known of the blood circulation CCSVI theory 20 years ago, I wouldn't have any handicap today. You are young and I believe you have every chance of controling the disease. My 4 step Healing advice

THE FOUR STEPS TO MULTIPLE SCLEROSIS HEALTH

1. DETOXIFY

2. OPTIMAL NUTRITION AND SUPPLEMENTS

3. EXERCISE BUILD UP PROGRESSIVELY

4. ENHANCE BLOOD/CEREBROSPINAL FLUID CIRCULATION - CCSVI

(Angioplasty as well as Chiropractic adjustment, even surgery, fall under step 4 which is potentially complicated if simple blood circulation thérapies such as acupuncture, neuro-muscular electrical stimulation, osteopathy, massage or swimming fail.)

See MS Cure Enigmas.net for détails

PS It would be a big mistake to mention MS at work in my opinion.
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Re: Just Diagnosed, Not sure what to do about my work

Postby Youarethecure » Sun Mar 16, 2014 11:01 am

It is very important to avoid stress as best as possible. My issue is anger more so than stress. I run a restaurant which can be one of the most stressing jobs out there but I do not let it get to me ever. All my employee's have a saying whenever anything comes up, we all hum "no stress no stress". Its a joke but at the same time its the damn truth. I warned all my people that I will not have anyone there that stresses me out or is a negative influence in any way. I actually just let a server go because she for like the third time irked me since my diagnosis.

I am the first person to say never stop doing anything until you have to because of this disease but at the same time if you cant remove your self from the stress in stressful situations its going to make everything worse. The last time I got angry and stressed at work (while in an episode) I literally woke up the next day with my optic neuritis acting up again and I am confident it is because of how angry and emotional I got.

That diet is a good start but just a start. Look into what foods are inflammatory and what are anti inflammatory. We need to avoid inflammatory foods and eat anti inflammatory foods. It is cool because for the most part, that breaks down to an extremely healthy diet. Exercise is a very important part of it as well. Most importantly is keeping a strong positive attitude through this battle.

Medication is something you need to decide as to whether you want to do it or not. Personally I am very against it and believe its more important to eat right, exercise, and get proper nutrient levels...... but I am a male and this tends to be much worse on us than in women. I just started copaxone yesterday and its like nothing has changed. One small prick 3 times a week and life goes on.

We are young, we will see the cure in our lifetime... but until then fight back on all fronts.
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Re: Just Diagnosed, Not sure what to do about my work

Postby Bouncycat » Wed Mar 19, 2014 7:24 pm

I am a 36 yr old female and I am a director at the firm I work for. I also have 2 small children (1 and 4) so my life is hectic! You have no reason to believe that MS will be a big barrier to you living your life so don't let it get in your way. You only mention a single episode, did anyone talk to you about CIS? to officially be diagnosed with MS the criteria say there has to be 2 distinct episodes separated by time and location. Reason I mention this is because not everyone with CIS progresses to MS. I was diagnosed first with CIS and started copaxone in hopes it would halt it there. For me it didn't, but for some it does. Is your neurologist an MS specialist? If not try and see one. I am in Ottawa and go to the MS clinic at the Ottawa Hospital, they are very good.

As far as diet goes there are lots of supposed diets that help MS. There is very little evidence to back many of them up. The most compelling evidence is for saturated fat (not gluten and sugar). Check out Swank, and also the diet building upon Swank - OMS (Overcoming Multiple Sclerosis) by Jelinek. Swank has 30 years of data on the impact of saturated fat in diet from his MS patients.
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Re: Just Diagnosed, Not sure what to do about my work

Postby ashleycanada » Sat Mar 22, 2014 9:03 am

Hi everyone,

Thank you very much for your replies. In the end I decided to disclose my situation to my mentor and a couple board members as well as some of the folks I work closely with at work. It seems like most people these days know someone with MS so the response I received was very sympathetic and accommodating - what could they do to help me? I now have an assistant and have cut back my hours (now only work 40 instead of 55) so my stress levels have dropped. I am also using mindfulness to improve my awareness about how I manifest stress - I think sometimes that the stress I have is something I create rather than something outside of me and my control. They say the most successful people have some of the lowest physical 'stress' levels because they are able to remain cool and and calm when challenges arise as they always do. I have been stressed my whole life and realized that changing jobs wasn't going to fix the way I am currently wired - I get stressed driving to the corner store for god's sake! Rather than feel that stress is an adversary I am trying to see it in a positive light - as something that motivates me. I am also trying to lighten up and not take everything so seriously. Have fun. Relax. Breath. It's not the end of the world if I am late or something doesn't come together at work. I tried, I learned, and I'll try again.

I am taking small steps in changing other parts of my lifestyle as I learn more about MS but I wasted no time in adopting a paleo eating regime and cut out all refined sugars, processed foods and alcohol. It seems like this is suggested in many places for MS folks. I had been feeling very fatigued in January and February (a possible symptom of the MS?) but in the last 4 weeks I have been feeling incredibly revitalized and full of energy. All the fatigue has evaporated and I can get through my day with better productivity than before!

Perhaps all of this is a blessing in disguise. A push from the universe to work less, reduce stress and have better nutrition and quality of life. I know its easy to say this because I currently have no MS symptoms but I really believe that good self care can prevent/delay progression of the MS and other diseases. I can't help but feel grateful for this push to take better care of myself and my family.

As a response to the above reply - yes it's true, I have been diagnosed with CIS and not full MS yet. I am also in Ottawa and was seen by neurologists at the MS Clinic here, apparently one of the best in Canada. Unfortunately I have been pretty horrified by my experience at the clinic. I found my neurologist to have horrible bedside manners - talking on and on about who knows what while I sobbed after getting my diagnosis, can't you just shut up while I process the news!? The nurse there is a particularly useless. When I asked her about any lifestyle changes she could recommend she laughed at me, actually laughed at me hard, and said "I don't know, get more sleep". Apparently she's been working at the MS clinic for 20 years and all you can tell me is to get more sleep? She also told me that brain lesions never heal which is also not true. Then a few weeks after the Dx they sent me a package full of brochures about MS and CIS and treatment options - every brochure was produced by EMD which is the manufacturer of Rebif, a med for MS. This is why I hate Big Pharma!

At this point the MS clinic and my neurologist have nothing to offer me and I don't need them anyway because I have no symptoms. We're considering starting a family so I am not on any meds at this time (thankfully). I don't feel I speak the same language as the folks at the MS clinic - they just make me feel hopeless and I will likely get support and advice from holistic practitioners like my naturopath and osteopath who don't laugh in my face when I ask what I can do in my day to day life to help my situation.

Again I appreciate everyone's feedback here - it's nice to have a community like this!

Blessed be,

Ashley
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Re: Just Diagnosed, Not sure what to do about my work

Postby Youarethecure » Sat Mar 22, 2014 10:47 am

Man, you sound like you went through the exact same process as I did with this.

It is truly a blessing in many ways aside from the obviously bad things that come with it. It is a reason for us to be happy, stress free, strong, healthy, etc.

I had my cis at 19 but everything came back negative and then went through a full episode at 24, which was a few months ago. I somehow am almost feeling 100 percent normal again which is kinda crazy considering how many symptoms I went through.

If you go the medication route I would strongly recommend 3 day a week copaxone. It has the least side effects and has been around as long as any other medications. I personally am against medication but I am male and it tends to be more aggressive for us so I went with copaxone. I just took my 4th injection today with 0 problems.

Now the true fight is how long we can keep the attitudes we have adopted !
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Re: Just Diagnosed, Not sure what to do about my work

Postby ChirowithMS » Sun Mar 23, 2014 7:03 am

Hi ashleycanada,

I know how you feel. I've been through it all as well. I'm sure you will find the path that works best for you and that will be your own personal journey that will make you the happiest that you can be.

I'll give you an idea of my journey so you can see if any of it helps.

First of all, you are not alone. There are lots of us out here and we all want to help one another and we all want to say goodbye to our symptoms and live without the fear that we feel. Good for you to reach out to see if there is a community to connect to.

I had my first symptoms when I was 40. L'Hermitte's, depression (a very foreign concept to my normally happy nature) and massive fatigue.

Everything but the L'Hermitte's went away over about a 2 yr time span. No drugs, just activity, happiness and love from my fabulous wife. It was really scary though!

8 years passed and then I started to get numb in my index finger beside a corner of one nail. Over a year that spread to the whole left hand, part of the right and up the arms a bit. I went back to the docs, had more MRI's and was given the MS diagnosis in 2008.

Over then next year or so I started to get more fatigue, but tried to stay active with the gym, sports and yoga.

In the past year or two my feet have gone numb, my left leg is dragging a bit, people tell me I'm limping but I don't think about it much. My thumbs are now starting to numb out. Fatigue at the end of the work day can be significant and has altered my evening activity somewhat.

OK, so why tell you all this? Because I've stayed at work through it all. I put in 5 days a week, from 8 till 5. I'm lying, Fridays I take off at 1!!!

I'm a chiropractor. i'm busy all day in a downtown office tower. My job is physical, mental and I have to be at the top of my game every minute. My patients depend on my expertise to help them. What they don't realize is that they help me. They give me a reason to get on with it every day. They make me feel so lucky. They all know I have MS but none of them can believe it because I look so healthy.

I am 58. People tell me they think I'm in my mid forties. So, if that's any indication you don't have to fear becoming a decrepit old beat up hulk!

The reason I do so well is attitude. I did not let MS become my "career". I did not dwell on it. Sure, it has affected me in ways that have changed my lifeplan, but I'm still me. I found the path for my own enjoyment of life. If it gets to the point where I could compromise patient health due to lack of sensation then I'll pull myself from practice. Sadly, frankly, that may be this year due to some weakness in my legs and the increasing numbness in my hands but who knows. My master plan is to work until I'm 70.

BUT GUESS WHAT?!? I'm going to go do something else at that point!! Life is full of cool things to do. Maybe I'll teach. Maybe I'll be able to do some research. Maybe I'll work at a golf course. Who knows?! But I'll keep working. I don't need the money, I need the connection, the self worth, the laughter, the mental stimulation, the new friends. That's what work is.

If it gets really bad, and I have to leave the sports I love, I'll do new ones. Maybe I can win gold in wheelchair tennis. That would be cool!

Don't quit life because you have MS. Embrace life. Revel in it. Hey, your MS may get worse, may not. Big deal. Get on with the day. Think of all the fun stuff you can do and go do it. Yesterday I caught a five foot long fish on the Fraser River. I did not sit around moaning about my life. Not that you are either, it's just that I want you to LIVE every day, MS or NOT.

Listen, enjoy the ride. Seriously. Enjoy it! Life is too short to get all hung up on some of it's challenges. Live it!
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