Misery in Missouri

[sunandmoonschild]

Hello to All. What a terrible way to start out, right? Let me start out by saying that the title to this post is absolutely the polar opposite of the person I normally am.

A few years ago (2009 to be precise) I had a MRI and the results stated subtle lesions. I did not receive those results until about a year ago though because of some mix up and just figured that no news was good news and whatever was wrong with me wasn't something that showed up there. I followed up with my primary all this time thinking that I would be able to get a resolution to all the aches and pains, memory loss and clumsiness (not to mention the numbness, tingling, heavy legs, constipation, awful fatigue and serious sadness that started to develop in believing that maybe I actually was crazy).

Today I prepare to go again to see if there's something more to this picture. At this point I almost pray that there is so I can get people to understand that this is NOT some sort of phantom pain or made up mystical illness that makes me wobbly, dizzy, super sleepy and completely mental nine days out of nine when it is "cloud bursting" (as I call it because when it rains it friggin pours).

In the past few years I've been diagnosed with cervical dystonia, hypothyroidism and hypoglycemia. An eye exam back then also revealed ocular drusen with retinal tears. My lung age is 69 after a nearly fatal round of pneumonia that hospitalized me for over a week. My retinal age they had in the 80s.

I'm 42.

Leg spasms, migraines, dark spot in the middle of my vision, hearing loss, memory loss, insomnia at times, anxiety, blurred vision and sometimes doubled or halo vision, I had a positive Babinski test in 2009 during that same neuro visit (the one that never got back with me). My legs feel like they've got 30 lbs weights on them and I'm just dragging my body around. I can barely pick my feet up and it can only be described as a wobble when I try to walk anywhere. I hurt like never before.

I'm taking fluoxetine for the anxiety and that seems to help a little with the insomnia. I have Xanax for the really bad days but I don't like missing out on my life in zombieville so I try not to take it if I don't just have to. Lately though, with this kind of pain, I've just had to. I'm a little nervous today but I've read through some of the stories here and it sounds like I've been on a fairly normal track in comparison so, thank you for that. I know I'm in good company...

Misery loves company you know...

I almost hope that I light that MRI up so I can get this new neuro to actually help me. So strange a thing to hope for... You almost pray that they will see you're really sick just so you can feel justified for feeling sick at all. Such a strange way...

Best wishes to all... Off to the MRI we go.

[annav410]

((HUGS))

I am newly diagnosed and I am just crushed to read your post. I really hope you get some answers and relief soon.

((HUGS))

Anna

[aitch10]

Oof. I am so very sorry you're going through all this.

((hugs))

[sunandmoonschild]

Thanks

The MRI that was supposed to last thirty minutes ended up being nearly a full hour in length. My head was ready to explode by the time I was done. Instead the migraine waited until I was almost home before it took the vision in my left eye. I ended up missing half the day today.

I suppose now would be a good time to say that my 65 year old mother met me in town last night to have dinner before the MRI. We don't get to see each other often because of the distance where we live.

She watched me walk across the parking lot of the restaurant and was crying by the time I got to her. She said she knew it was bad but had no idea that it was THIS bad. I felt terrible that she had to see me like this, but then again, I feel terrible that ANYONE has to.

I know most people wish to win the lottery so they can travel the world and do whatever they want to do. I want to win it so I can afford to hide out at home.

I can't seem to focus today either. My concentration level is zero. I don't want to work today. I've reached that point where I'm so ready to go home and go back to bed that I can't even focus on the fact that I've got another 10 hours ahead of me before that happens between my two jobs. I'd rather just go to my room, pull the covers up over my head and try to sleep.

And apparently my whine factor is up as well. Maybe I'll start slurring my speech today as well so my boss asks me if I've been drinking again. What fun that shall be!

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[MyGirlsMom]

Dear sun and moon child,

I am sad to hear your story...I understand the stress, anxiety, tears, pain and frustration...and the feeling like your crazy! I am sending you some cyber hugs and hope that you get some answers and help soon! You can get through this....all of us on this board help each other deal with our MS, because we understand. We have been there too!

Hang in there! Big hugs!

[bailey7976]

In your original post I read twice that you mentioned you almost prayed. How about trying to do it.

I know all too well, as many others here feel like when the weight of the world feels like it is collasping and all you want to do is to be able to make it through the day without pain.

I am 37yrs old. I was dx in 2008. I have had several symptoms and I have dealt with it through injections daily. I also have hypertension.

I go to school full time. Work full time. A wife and mother full time. I would consider myself blessed for the last 5 yrs, even during the rough times.

Just a few days ago landed me in the hospital for a 2 day stay. I was dx with anxiety and stress. Makes since I do a lot, but the symptoms I was having I thought I was having a stroke. Tests ruled that out. Spasticity is the only thing I have read on some of these post that makes sense.

MS is strange and unpredictable. I just have to believe this is a spiritual attack as well as physical and I ask Jesus to get me through another day.

I will will you find comfort and peace on your journey

Elizabeth

[David54]

Misery loves company

Dear sun and moon-

Things must seem overwhelming at this point in your journey.

I was diagnosed 7 years ago with RRMS (but it's become apparent that it's more likely a more progressive stage).

I'm 59 and was fortunate to have enjoyed a very active life until my problem was identified. My golf was errant for a few years; but I attributed my balance problems to a blown disc in my lower back.

When I only partially recuperated after my back surgery in 2005 it became apparent there was something more ominous lurking.

A neuro-muscular specialist speculated I was exhibiting either MS or ALS traits; so MS certainly got my vote.

I'm really not trying to minimize the enormous dread you're carrying around; but I am so hoping you'll equip yourself with as much knowledge as you can (knowledge is power), find health professional "partners" you can depend on and try to surround yourself with friends and loved ones you can be open and honest with.

This road is not easily travelled; but if you can take some joy out of simply putting one foot in front of the other (or simply not running over folks in your power wheelchair as I travel these days) things can seem less crappy than you might envision.

Please don't give up. You can figure this out and this site is a really good place to be- David

[sunandmoonschild]

Thank you

For what it's worth I do pray but I find it a little sad to pray for something to turn up in a medical way in order to get the doc to pay attention to what's going on. Just seems a little silly to pray for something to be wrong just so I don't feel crazy.

I suppose I should back up just a little long enough to say that this started in 2008 when I noticed some heaviness in my legs and then noticed I was getting a little clumsy. I fell several times and "tripped over my own two feet". I noticed over the course of a few months that this would get better and then get worse. At the peak of this is when I started talking to the doctor. The MRI was done in 2009. I didn't get the results until 2012.

I just had another MRI done without contrast. Does there seem to be a notable difference in contrast versus without?

Thanks in advance and for your answers so far.

[odd duck]

Misery in WA

I prayed for years that the doctors would finally find something "physically" wrong with me so that I would no longer be "crazy". Would you believe I was actually told by a doctor that I was purposely soiling myself to get attention. I asked "who in their right mind has diarrhea in their pants to get attention?" Not thinking, of course, they didn't think I was in my right mind. I live alone and for two years I had times that I went days on end afraid to leave my house for fear of soiling myself.

So yes, I prayed fervently, and after my MS diagnosis I learned that one of my flare warning signals is bowel incontinence. My PCP had never heard of such a malady. My constant sore throat is due to swallowing difficulty and a swollen lower tonsil (did you know you have lower tonsils). My throwing up is due to spasms. Oh, I was accused of doing that for attention as well. Who's attention? I live alone with my two dachshunds.

This same PCP found a shadow on my brain about 5 years prior to my diagnosis but said it was "nothing to worry about".

I'm not from such a cold climate but maybe long term exposure freezes the brain tissue and causes cognitive dysfunction.

Once everything is figured out then all your issues can be addressed properly. I think that God knows that in our heart we aren't really praying to be sick ... What we are praying for is an answer to what is wrong with us ... an answer that feels right to our soul ... If that makes sense.

Blessings!

[fishead]

sunandmoon,

I am so sorry to hear of all you are going thru. Please know we ARE HERE for you.

[sunandmoonschild]

MRI is back

MRI non contrast came back as nothing new noted. I have a neurology appointment in January. I can only hope at this point that she's a good one and will actually listen to the symptoms and give me some kind of hope or, at the very least, honesty that can encompass everything going on with me and HELP.

I'm seriously frustrated right now. I'm in a terrible mood. And the more I realize just how pissy I've been; the worse my mood becomes because this person is just not me so let's throw a little self loathing in there while we're at it.

You've all be so great. Thank you so much for your support. I honestly promise I'll be better at some point... or at least that's the hope. Oh, and odd duck... if it helps at all; the last neuro I went to actually set me up with a psych eval. I was so infuriated by that I actually forgot where I parked my car and spent a half hour crying in the parking lot looking for it (yep that helped him believe I was nuts for sure).

I've got a message into my primary care doc about the MRI results so we'll see what he's got to say this time. I'm honestly frustrated and so very, very tired. How anyone including me puts up with me is a mystery...

[zeak]

sunsandmoonschild

It a sad state of affairs when we have to hope that something will show up for our docs to believe us and not think we are crazy. I know that feeling all too well. I had first symptoms in 1999, mini-strokes I was told, and was just finally dx'd with MS November 4, 2013. I will never forget that day, the neurologist said " you don't have cancer, you don't have a brain tumor, you have MS". Music to my ears, I was almost convinced that I was crazy. Finally, finally all my aches, pains, constipation, urine incontinence weren't my fault. My falling up and down thresholds, cuz I couldn't tell the difference, wasn't all in my mind.
I pray that you get your answers so you will feel better about yourself.
I start Rebif tomorrow.
Good luck on your journey and keep us all informed, we are there for you. Been there, done that.
Sue
I have MS, but MS doesn't have me. my motto

[odd duck]

Dear Sun and Moons Child,

You said "How anyone, including me, puts up with me is a mystery ..." Boy do I feel you! I'm sending you a huge hug right now because right now I'm so not "myself" I can't stand it.

My neuro put me on Baclofen for my spasms, it's supposed to be the best for MS spasms. Most people just complain that it makes them more tired than usual. Well, I never have that problem. Medication never makes me drowsy. In fact, I have a hard time getting sleeping pills to work when I have insomnia. But, the Baclofen has made me nuts. I'm snapping at my dogs for no reason, I've kicked the wall a few times. Thank God I haven't kicked one of my boys (dogs). Fortunately I've just had a chemical reaction to the drug.

But here's something you can try to help your mood. You are very stressed out which means you have high levels of cortisol in my body. To get those levels down counteract them with 1) endorphins by laughing. You don't have to feel like laughing. Just make the noise. Who cares if you sound nuts, it really will help. Do it for about 10 minutes. 2). Raise your testosterone levels (yes, women have testosterone too). Stand with your feed shoulder with apart, put your hands on your hips, puff out your chest a little, raise your chin and tilt your head, smile a little. Some people call this the Wonder Woman Pose.

Before I ever heard that I thought it was my sassy girl pose. You can find this and other poses on TED by Amy Cuddy Body Posturing. Amy suffers from brain damage and learned that holding certain postures releases chemicals to the brain. This was given to me by my neuro to get me through this and it's really helped.

God bless you. You are cared for!

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Irina Maria]

Hello to All. What a terrible way to start out, right? Let me start out by saying that the title to this post is absolutely the polar opposite of the person I normally am.

A few years ago (2009 to be precise) I had a MRI and the results stated subtle lesions. I did not receive those results until about a year ago though because of some mix up and just figured that no news was good news and whatever was wrong with me wasn't something that showed up there. I followed up with my primary all this time thinking that I would be able to get a resolution to all the aches and pains, memory loss and clumsiness (not to mention the numbness, tingling, heavy legs, constipation, awful fatigue and serious sadness that started to develop in believing that maybe I actually was crazy).

Today I prepare to go again to see if there's something more to this picture. At this point I almost pray that there is so I can get people to understand that this is NOT some sort of phantom pain or made up mystical illness that makes me wobbly, dizzy, super sleepy and completely mental nine days out of nine when it is "cloud bursting" (as I call it because when it rains it friggin pours).

In the past few years I've been diagnosed with cervical dystonia, hypothyroidism and hypoglycemia. An eye exam back then also revealed ocular drusen with retinal tears. My lung age is 69 after a nearly fatal round of pneumonia that hospitalized me for over a week. My retinal age they had in the 80s.

I'm 42.

Leg spasms, migraines, dark spot in the middle of my vision, hearing loss, memory loss, insomnia at times, anxiety, blurred vision and sometimes doubled or halo vision, I had a positive Babinski test in 2009 during that same neuro visit (the one that never got back with me). My legs feel like they've got 30 lbs weights on them and I'm just dragging my body around. I can barely pick my feet up and it can only be described as a wobble when I try to walk anywhere. I hurt like never before.

I'm taking fluoxetine for the anxiety and that seems to help a little with the insomnia. I have Xanax for the really bad days but I don't like missing out on my life in zombieville so I try not to take it if I don't just have to. Lately though, with this kind of pain, I've just had to. I'm a little nervous today but I've read through some of the stories here and it sounds like I've been on a fairly normal track in comparison so, thank you for that. I know I'm in good company...

Misery loves company you know...

I almost hope that I light that MRI up so I can get this new neuro to actually help me. So strange a thing to hope for... You almost pray that they will see you're really sick just so you can feel justified for feeling sick at all. Such a strange way...

Best wishes to all... Off to the MRI we go.

Dear Wonder,

"May the good lord shine a light on you..."

All my kind thoughts,
Irina

[sunandmoonschild]

New Sheriff In Town

I informed the boss today of my diagnosis. I did so because it seems more and more that my alarm goes off at 430am and my legs don't want to wake up until around 6 at times. I'm having more and more trouble getting around on these wilted stems of mine. I swear if the pains get any worse on those flare ups I'm going to chop them off and donate them to science fiction.

I got the little snarky eye from a coworker when I was talking about it today. I've kept my diagnosis to myself for quite some time. She took it that meant I wasn't "THAT sick" after all and I was just using the MS diagnosis as an excuse to call in and work from home instead. I informed her that at any point and time she wished to try out my legs with her beliefs that I would be open to that exchange just long enough for her to realize how foolish that thinking was. I've been with my company for nearly 8 years. I am sure I can think of something more creative than MS to call into work with. And I told her that if I didn't have MS I would walk a straight line out of here so she should be glad. LOL

We have remote access where I work so it's not like I'm costing the company money. I'm not asking to set up shop in my living room permanently. I informed the powers that be of the new "sheriff" that lives in my body and tells me how it's going to be each day so if I needed to start out the day from the house while my legs woke up or I needed to go home a little early to get a nice dinner in with a muscle relaxer before the spasms made me cry that I would do everything I could (as I have been) to make sure my job was completed every day.

I don't think that the idea was well received to work from home but they didn't toss me out the window either. I think just getting the day started from home while my legs "wake up" or leaving a little early to tuck myself in with a muscle relaxer so I'm not driving through town under the influence of something will truly help me on those awful days. And it's not like I'm asking for every day or even every week. It's just for those super bad days that my body reminds my brain that they aren't BFFs anymore.

One boss posed the question of "What if it's not MS and it's actually something else?" I responded with, "Then the four doctors and past nearly six years of tests are all wrong." And he asked, "Why can't you get another opinion?" A fair point I thought and informed him that I see yet another new neuro next month. Hopefully that neuro will get me straight on something that will help with these blasted awful flares that make life ever so dreary.

Any suggestions on how to ease everyone into this brilliant catastrophe? Did I handle it correctly?