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Guess what? I do NOT have Multiple Sclerosis!

This is a rarity for me… writing a post entirely about myself. I may throw in bits and pieces from time to time, but other than my “About” page, I’ve never written only about me.

For those who I have become WordPress buddies with, you have been along side of me through the past few months with my up’s and down’s of having recently been diagnosed by a neurologist as having MS. Well, today I FINALLY went to see an MS Specialist and she says I do not have Multiple Sclerosis. There are several reasons why, but primarily, the white spots showing in my brain scan are not in the normal area where the lesions occur. Then adding in the fact that my spinal tap (lumbar puncture) was inconclusive, and my ophthalmologist exam showed no signs of MS in my eyes, I appears that I just do not have MS.

At first, I cried. Don’t get me wrong – I do not want to have MS, nor any disease for that matter. But I have felt horrible since January of 2011 and have been going downhill for the past several months. I want an explanation – which she (the doctor) could not give me at this time. Not a definite explanation anyway. The doctor does still need to see the brain scan from August 2011 to compare against the scan I just had in February 2012. But I do not expect her to see much, if any, difference.

So, why have I been so horribly fatigued? Depressed? Dizzy? Weakness and severe pain in my legs?

Possibly a stroke combined with a spinal cord injury. She felt fairly confident that I may have had a slight stroke – and yes, I did receive a lecture about smoking. And she did see and confirm I have a rather significant weakness in my legs and a lot of pain – therefore possibly spinal cord injury, herniated disc, etc.

So, MRI of the neck scheduled for May.

Why the fatigue and depression, especially starting up practically overnight in January of 2011? I have never experienced one day of depression in my life. Sorrow, yes. Sadness, yes. Depression, no. To be perfectly honest, it could very well be my job. I despise a lot of it. I do enjoy the computer work, but cannot stand the customer service end of my job. Without going into too much detail, the company I have worked at for three years now is a combination of reservations for large sporting tournaments throughout the country and some internationally. Each event has to have a new event site built in our system, and that is the part I enjoy. Plus the system maintenance. But having to put up with the hospitality end is not my cup of tea. I was raised in a much different world – I was raised to appreciate everything. Now, everyone expects Four-star hotels, all inclusive, for $50/night. Ummmmm… no. And every parent thinks their daughter or son is the next up-and-coming athlete which will make millions of dollars, so they must be pampered and have everything just so.

Plus my boss is a capitalistic, micro-managing workaholic, and expects everyone else to be as well. After two years of working 60 to 80 hours/week, I’m pretty sure in January, 2011, I subconsciously decided I was done with the long hours and stress. Thus the fatigue which brought on depression.

So what do I do now? I’m not sure. I am still mulling this over and will not make any decisions until after my next scan in May. But it looks like I really need to make a career change in order to keep my health.

If I do have a spinal injury or herniated disc, no way am I going under a knife. I’ve heard too many horror stories about that.

But at least I do not have MS. Now that this news has settled in, I feel better now. Even though there is no clear explanation as to how I’m feeling, I no longer feel tied to this job purely for insurance reasons. I’m beginning to feel the relief now. I really need to focus more on my graphics and websites and start getting some contract work in so I can move on out of this job. It’s destroying me.

Thank you all who has been by my side and supporting me. Especially those women whom I have met online who do have MS – your kindness and sympathy means the world to me – I just wish I could do the same to you that the specialist did for me today.

46 Comments »

  1. Well, you’ve been released from the tragic certainty of an incurable disease, to at least the possibility of a condition that might be treated and eventually cured. I like your odds a lot better now, and I’m feeling a wave of cautious optimism for you. But obviously, the most important thing is how YOU feel about all this.
    If you can make a career change away from a job that has been making you exhausted, sick and depressed, then by all means, head in that direction. If anyone can do it, Michelle, I think that you can. You’re immensely talented, and I think you’ve got what it takes.

    I’m wishing you the very best of success, happiness and fulfillment in your life.

    • Thanks so much! Frustrating I still don’t have a definite answer, but hopefully it’s something that won’t keep getting worse. I can deal with a stroke and herniated disc much better than MS.

  2. I am so glad to hear that MS has been ruled out….It does sound like a job change is in order….I haven’t been at this very long…but I had horrible leg pain,,and embarrassingly enough, it was varicose veins!! And sitting was causing it….I know this is probably no help..but at one time I also suffered from dizziness and depression,etc all due to yeast allergies and hairspray! It all comes back at times if I use a certain hair spray..or indulge in too many yeasty foods and drink.I don’t want to minimize your suffering in the least..I felt very desperate…I’m sure you’ve probably investigated all of this by now..but I thought I’d put it out there…at least your stress is reduced a little 🙂 🙂 HANG IN THERE!!

    • Actually, I haven’t investigated too much. Had my first MRI in August last year, and the neuro I saw then said MS, so went with that. I’m not stopping til I know something, but i do need to leave this line of work. I have very little tolerance towards the stupidity in hospitality and customer service.

      • Well it might be worth investigating…I found a book called the yeast connection and it really helped me…I’ve also had scans etc, always normal….but, yes, you need to be in a “happy” place!

  3. Michelle, i am SO glad you learned you do NOT have MS. rock on. i have many thoughts here re the rest of your post and will respond when they are more well-formed. for now, i know you’ll do what’s best for yourself re the job, and your health. i hope the next scan can pinpoint the problem and that whatever it is can be dealt with to a positive outcome. continue…

    • Thanks! It was weird… I was upset when i found out I didn’t have MS. But that’s because I want an explanation and don’t want to start all over again. But the stroke and possible spinal injury, plus the stress all actually makes sense. When I work in our system, just computer work, and my boss is our or leaves me alone, I actually feel pretty good. But the stress is really destroying me. I spoiled my boss by working 60-80 hr weeks for two years, I think.

  4. Whey hey!!!!!! I am so very glad to hear this news.. although I know the frustration will go until you get clear answers which I hope you do soon 🙂

  5. Whee! I’m so glad to hear it’s not MS, but I understand that being able to put a name to something, even a bad name, can be better than not knowing. I hope you find your answers soon. In the meantime, life’s too short to spend it toiling in a highly stressful job if you can find something.

  6. I am glad to hear that it’s not MS. Although some of us have the tendency (me included) to drive ourselves, our body will finally say enough. I just canceled a flight for tomorrow and I am holding off for 2 weeks, because I agonizingly realized I could not push myself any longer. I know it’s frustrating not knowing yet what is wrong but at least there is hope that it is something that they can treat with good results!!

  7. Michelle WOOHOO!!!
    This is the best news I’ve heard from anyone in weeks.
    Understand the frustration of no diagnosis though, along with the pain of the f’ing lumbar taps, etc etc etc.
    Let me say that even though it DID take me six months to recover from a spinal fusion it DID take.
    Only problem I have is that the back keeps on degenerating… so it’s always going to be pain, tests, blah blah blah.
    Your list of symptoms probably not only has to do with your hideous working conditions but the disease, whatever it is, kicking your ass. Which happened at roughly the same time.

    am sending the bestest wishes, and DO hope you get some kind of definitive answer. SOON.
    We need you ’round these parts.

  8. I’m really hoping that this is going to be win-win for you, not having MS, and getting a step closer to finding out what’s going on. I wish you the best of luck, and the best of health!

    • Thanks! Now that it has sunk in, I’m doing better – mentally that is. It’s going to reopen some doors for me – just not sure what’s behind those doors yet.

  9. That is awesome! I went through a similar situation, and I understand just wanting to know what is wrong. I am sure they will discover the cause of your symptoms soon. I wish the Dr.s had just gotten it right the first time, but it is a condition that a lot of doctors just label, without really understanding it. It is kind of scary if you had a stroke though, but hopefully they will know for sure soon. Anyway, I am so happy and relieved for you.

    • Thanks! I was so devastated at the thought of starting over, but I’m okay now. I’ve slowed down my life and feeling better just from that alone. But the fatigue and pain really brings me down every day.

      Yeah, the first neuro was positive that’s what it was. But he didn’t look at the films, just what the radiologist said. Then the specialist today grumbled, “I hate it when they do that…” Gee, thanks for making me so miserable and chasing a diagnosis that isn’t the problem.

      • Yeah, I’m so sorry. Some of the depression, etc. might have been related to all the worry about having MS, and the frustration at the doctors taking so long to actually treat you. Now that some of that worry has been ruled out, the fatigue and depression might ease up too. Hopefully… 😉

        • I hope. But the pain in my legs and lower back truthfully has been very bad. It is very well something could have just “tweaked” in my neck, back or something just because I was an extremist for so long. I really did push my body to the edge.

        • Oh, I will. Nothing will occur until the neck MRI, and I see the specialist that same day. She reads the results herself – which I really like. My first neuro never did. Just went off of what the radiologist said.

  10. Best wishes indeed. Won’t offer any advice as I have no personal experience in this area but I would like to say I thought it was GREAT and very inspiring that you’re taking the positive stance of focusing on doing the things you enjoy – graphics and websites and contract work – and getting OUT of the current nightmare job!

    • Thanks! I definitely need to get out of this line of work. Or just become strictly IT. I just have such disdain and low tolerance towards people who whine about their hotel reservations all the time.

  11. I’m relieved you don’t have MS either, but then, I wasn’t aware you were going through a health issue. I know what job stress is like. My last job, I used to cry before I went, cry when I was there and cry when I left. It was pretty awful. I try to not be one to complain and be thankful but it was taking so much away from me. Yes, concentrate on your creative side. That and exercising is what eventually helped me through the last months.

    • Thanks. I know what you mean, though. Especially in today’s economy, I have a very good job. Pays well – that is until I cut back to 30 hrs/wk and stepped down from my directors position. My salary dropped 15k. And I know so many people who are unemployed. Good people. Educated. Just having a hard time finding solid employment. And here I am whining and crying about my job, when so many have none. But I ask myself, what good is this job if it’s destroying my health? I have some thinking to do, for sure.

  12. Sounds like better news if it ain’t officially good news. And SMOKING!? Cease and desist!

    Depression can follow what probably are minor endocrine shifts – especially after time. I’ve never experienced depression as a critter unto its own self until this year – when I went through 2 1-day events. After decades of none of this.

    Fortunately, I recognized it for what it was – that is unrelated to anything emotional, patterns in my life – and got past it apparently OK. Made a couple tweaks in my diet. Though undoing one pattern seems to have harmed another progressive physiological improvement and now I’m backtracking.

    Like Scrooge, I consider it to be a fish bone or a spoiled piece of mincemeat in the pudding. 🙂

    But, most of all – your news is good news to all of us riding on this train with you.

  13. I know finding out you don’t have MS is good news. But I also understand the frustrating not knowing what is going on with your body. There are so much progress in the medical world. Have a disease call Pulmonary Hypertension. 20 years ago it was a death sentence. Last year I use using oxygen. Today I walked 16 blocks without oxygen. This was not possible last year. I’m telling you this to remind you there is hope and while you are waiting on your test remember that. God Bless.

    • Thank you for your kind and wonderful thoughts and words. I’m actually doing pretty good. Today is a good day. I think I was also suffering from mental MS… my mind was making my symptoms worse than they really are. But I do have to remember that all this started before I ever heard a doctor utter the words MS, so there’s something there… just not sure what yet.

  14. Michelle, I can’t tell ya how happy this makes me. So glad there was a misdiagnosis. But, now on to exactly why you’re feeling the way you are. Sometimes it’s just a matter of years of frustration, over-work, life crap. Someoneabove said hammer the docs about what’s happenning. Do so, but check doctor ratings and the attending comments. I’ve seen good, bad, and ugly docs. Good ones are out there. Keep up on on-going investigations into unneeded procedures, and only ALLOW the ones YOU need. Love you tons, and you have my #, if you ever need to talk, anytime, day or night. I’m a night owl, so whenever, Sweetie!

    • Thanks, Chris! Not sure you’ll read this since you didn’t enter in your email, but will respond anyway. I know you’ve been through quite a bit and definitely have the beta on the good, the bad and the ugly when it comes to doc’s and the health care system. I was very impressed with the specialist as she obviously knew a helluva lot more than the initial neurologist I was seeing. So we’ll see what the outcome is after my next scan and I bring her the films from the very first MRI (which I didn’t have when I saw her the day I posted this). Hope you are well up there in Boiler country. Miss you tons and love you so much! Take care! And damn it…. I keep forgetting I have GOT to finish that book so I can send it to your mother. I promised I will get it to her, and I will. I don’t break promises… but sometimes I’m a bit slow to make good on them… 😀

      • New E-mail included. Fosho stick with the new doc. Sounds like she has the plan. As for me, other than my new cat driving me bonkers, and my neighbors pissing me off, and this close to getting my Jeep back on the road but not quite yet, and being constantly broke, and meds messing with, and stopping smoking (:D), and, and… lol It’s all good, tho. C’est la vie, mon cherie! Glad you got a good doc now. Hope she can get to the bottom of it. You will rise like ze proverbial phoenix, girl! Like I said, call if’n ya need to, np whatsoever! Love you too! 🙂

  15. I haven’t been able to keep up on my blog reading due to various reasons, one of them being the fact I’m also undergoing extensive testing in an attempt to discover the source of not only chronic exhaustion, but also chest pains and other issues. The appointments, on top of other regularly scheduled appointments, in conjunction with trying to complete things required for the screenings scheduled in May, are running me ragged. So, I just now read this.

    I’m glad to hear you don’t have MS! Very glad! However, not happy to hear you may have had a small stroke. I also have slight weakness on my left side with more pronounced hearing loss. Although PET scans and EKG’s have been done on my heart with no problems found, and a CT is scheduled for my lungs (pulmonary already completed and was excellent), I doubt they’ll order an MRI at this point even though strokes are in my family history.

    I just want to know what’s going on. It is clear part of the problem is stress related and it sounds to me as though you’re experiencing the same thing. However, though stress may be the culprit, it causes an actual medical problem with symptoms and trying to find the elusive problem can be difficult. The root problem causing the symptoms can’t be treated until that root problem is discovered. Stress caused by hostile job environments (and I worked in one) causes far more problems than most realize, including doctors. I’m at the point where I just want them to find something, anything, put a name to it, so it can be treated and I start feeling better. This is just crazy.

    I hope the source of your symptoms is found, and soon. Remember that I’m always here. You know how to find me and I’m always available for friends. Always.

    (((hug)))

    • Thanks, Sweetie. Not real thrilled about the stroke possibility either, nor having to start over again. After the MS specialist told me it wasn’t MS, and after that sunk in, I thought that maybe a lot of it was in my head. Nope. Not after the past couple days. Extreme fatigue, slight tremors, and a lot of leg pain. So, who knows…..

      I hope you are able to get to the source of your ailments, too. Life just rather sucks when chronically not feeling well.

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