Posts Tagged With: MRI

Today Is World Lupus Awareness Day!

Posted on May 10, 2013 by Nahleen

“I can’t diagnose you with Lupus now but I can tell you that you have enough of the list of Clinical items we look at to diagnose you with it eventually that it may come up for you in the future. I’m so so sorry I can’t diagnose you now. But please PLEASE make sure to keep it somewhere in the back of your mind for the future when things are at your hardest because this will likely come up in the FUTURE. I know you don’t want to hear that but it will be important to remember.”–That’s what my first Rheumatologist drilled into my head 11 years ago in 20012, as I was on the journey to find out what was wrong with me in the first place. I have no doubt she was an Angel sent to help me find out the VERY HARD way that I had Multiple Sclerosis.

8 years later I can tell you that I believe she was also sent to help me FINALLY be diagnosed with Lupus. That was in June 2010.

8 YEARS LATER.

They still didn’t know enough about Lupus even 11 years ago for her to diagnose me. I can remember her apologizing profusely that she wouldn’t be able to give me any answers about my very uncomfortable symptoms that were in her Specialty–such as me having Lupus and me thinking at the time that that was quite alright. I was 26 years old at the time. I didn’t really need to hear about having Lupus. Really. MS was enough.

I didn’t really need to hear about having MS either but I did. That December of 2002 I was diagnosed with MS because I had FINALLY had an MRI and there were lesions on my brain to show that I had MS. There’s a lot more to this story but these days looking back on the traumatic Hell I went through back then, I’m pretty darn sure I had both MS and lupus and that they were flaring up at the same time but MS was the disease that had physical evidence to show people. You could SEE it. There was SOMETHING to prove. MS is also a VERY confusing disease to diagnose BUT at least there are lesions on the brain.

Lupus doesn’t have that. Lupus is even more invisible. It’s the Great Imitator. It’s the Great Mimmicker. There’s pain, there’s fatigue, there’s a brain fog and they all show up in MS–and now I’m learning they are different BUT wow they overlap like crazy. Lupus also affects organs. It affects the body tissue. It affects the mouth and can make it crazy dry along with eyes. It can cause rashes. It is very sensitive in the sun. HOWEVER, it seems like if the body doesn’t CRASH in some way than it’s hard to figure out. All of my symptoms were blamed on the MS. Even more interesting is that I think I’ve had something like Lupus since I was a kid. Imagine treating that as a kid. Yeah I wouldn’t have liked it but it would’ve explained A LOT and I have a feeling I’d be feeling lots better right now.

For me the signs that “something else” was going on in 2010 were that my thyroid acted up, then my eyes got really weird, THEN my liver nearly failed on me and the levels were toxic. That caused me to basically vomit up my ENTIRE BODY. That is the only way to explain it. I don’t vomit. This may be TMI for you but it’s the truth and I’m here to tell you the truth. I don’t vomit. I get extremely nauseous. Vomiting is strange for me. Sooooo, that really should’ve been the big indicator something was off. But no, I thought it was an awful stomach bug. How did I know the difference? Looking back, I was so out of it there’s NO WAY I would’ve known left from right at that point.

So what happened?

MY BODY HIT A WALL and my liver was nearly in failure. Thank goodness I’m so sensitive and my body gave me enough warnings. Thank goodness I listened. Thank goodness I am pushy and stubborn.

In June of 2010 I was severely ill and doing that “vomiting” I talked about earlier. It took 2 MORE MONTHS to be diagnosed with Lupus.

2 MORE MONTHS.

I WAS DIAGNOSED WITH LUPUS IN AUGUST 2010.

THAT IS TOO LONG. What if something else had gone wrong? What if I wasn’t being seen by any medical doctors at the time and tried to tough it out? What if my body shut down on me? These are the kinds of things that run through my brain. I can’t help it.

The most prominent question is this:

WHAT IF THAT ANGEL OF A RHEUMATOLOGIST IN 2002 HAD NOT DRILLED IT SO MUCH INTO MY BRAIN THAT ONE DAY I COULD HAVE LUPUS?! THAT ONE DAY THINGS MIGHT GET AWFUL AND I MIGHT BE FEELING SO TERRIBLE AND NO ONE, AND I MEAN NO ONE, COULD DIAGNOSE ME WITH ANYTHING TO HELP ME FEEL BETTER? WHAT IF I HAD CONTINUED ALONG THINKING I ONLY HAD MS? WHAT IF I HAD NOT SENT MYSELF TO A RHEUMATOLOGIST BECAUSE I WAS AT THE END OF MY ROPE?!

IT SHOULDN’T BE THIS WAY. LUPUS IS A VERY SERIOUS AND DISRUPTIVE DISEASE AND I’M STILL RECOVERING. It was a very special Doctor who helped me 11 years ago when I needed it the most. Without her I wouldn’t have EVEN THOUGHT to bring up Lupus. It’s not a black and white disease. It is all in the greys. And let me tell you, it gets REALLY COMPLICATED when Multiple Sclerosis comes into play.

REALLY COMPLICATED.

And this is why I spread awareness and tell my truth about what I have been through. This is why I believe so much in spreading the word about what I’ve gone through and am so grateful that there are organizations who have established Days like World Lupus Awareness Day. PLEASE. If you aren’t feeling well and you don’t know what’s wrong, keep asking. You know your body. You deserve answers and there is going to be someone out there who can help you. They may not have all the answers or tell you what you want to hear (boy is that the TRUTH) but they can help lead you in the right direction.

AND ONE LAST THING: THANK YOU TO THAT SPECIAL DOCTOR WHO WALKED ME THROUGH THE HARDEST TIME OF MY LIFE 11 YEARS AGO. I AM FOREVER GRATEFUL FOR YOU. YOU GOT ME ANSWERS ABOUT MS AND YOU GOT ME ANSWERS ABOUT LUPUS EVEN THOUGH I HAVEN’T SEEN YOU FOR 11 YEARS.

So please if you are so inclined, spread the word about Lupus. Spread the word about all of these crazy autoimmune diseases. They are all so similar and there is so much more to learn. And please, take care of yourself and listen to your body. You deserve it.

If you have any questions or comments let me know. Let’s talk about this. Let’s spread awareness. No more hiding. The more we know the better off we’ll all be.

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MRI

Posted on July 17, 2012 by Nahleen

I got to have an MRI (Magnetic Resonance Imaging test) test done on my brain today.

Good times!

Yeah not so much. I figured out today that I think this was my 15th one in the 10 years since my MS diagnosis. I never get used to them. I might know more about what to expect but that’s about it. Something about lying in the tube (feeling like I’m either going to be abducted by aliens or lift off in a spaceship), ear plugs in my ears (to hopefully block the very bizarre sounds that come from the machinery yet it can still be quite loud–but good luck when the technicians talk to you because you probably won’t hear them and you can’t move your head so that poses a whole other challenge), with your head locked in place, on a very very flat surface (when are they going to come out with cushiony mattress and pillow-type MRIs????), what looks like a cage over your head and sometimes even earphones for music (that ends up possibly blowing out your eardrums too) just really isn’t my cup of tea. Oh and then if the doctor orders Contrast (special dye to help bring up the trouble spots in my brain) then that’s a whole other set of good times, since I have to be pulled out of the place I was stuck in only to be teased to see a bit of the outside world, to talk but have no idea how loud I’m talking (ear plugs), be talked to by the person putting the needle in my vein (let’s hope it’s in the vein because it has hit muscle before and the pain is ridiculous), and then once they’ve decided I’m all set I have to be put back in the tube. That last part is usually the hardest for me because I know I’m almost done (they do contrast at the end) and that time seems really really draggy long.

I know. Crazy to think I don’t like any of the process. Also knowing that I am in there because I have multiple sclerosis and these MRI tests are necessary as routine check ups at least every year (and sometimes even sooner depending on what’s been happening in your body) and that there is NO END in site for the disease or for these MRI tests (because even if I don’t have health insurance I will be doing my best to have these tests done) doesn’t help either.

When I’m in the tube I hate that I can’t move. It was already hard when I was healthy (or at least I think I was healthy once–don’t remember much of that) to be stuck in one position and not be able to move (not sure when I ever was not able to move now that I think about it but anyway), but with MS and lupus, if I’m not moving I get really stiff and I start to have lots of pain. Plus I’m not comfortable and I’m probably bracing myself so I don’t even move one little millimeter because I’d hate to have to do it again so then I get worn out from using up all of that energy. And I’m a bit claustrophobic so that doesn’t help me at all and I just have to try not to think too hard about where I am and try to have faith that it’s all going to work out OK. Oh and how could I forget that I can’t wear my glasses in there so then I’m blind (yes, I have contacts but I’m still learning very slowly how to wear them again–long story).

Sure these tests help doctors diagnose many issues that might be happening with our brains and other parts of our bodies. Specifically when it comes to MS, it helps doctors find out if we have any lesions (or more lesions in my case) on our brains and if so, if they’re active and then they can see if the MS has progressed or not and what to do about it if so or even if not. Sure it’s eventually over. Sure it’s not nearly as terrifying as the first MRI I had almost exactly 10 years ago.

But see that first MRI when I was 25 (10 years ago) was ABSOLUTELY TRAUMATIZING AND TERRIFYING to put it lightly. I have yet to be able to even post all of the details of that part of my Diagnosis story here on my Blog because it was so hard to deal with and I still have so many issues in regards to that whole experience. I’ll just say that I’ve never been and hope to never be stared at with such pitying eyes (as if I was going to die and things were oh so “dire”) as that first technician looked at me with because she thought I had a brain tumor which then lead me to 3 very agonizing and awful days in the hospital stuck in some Alfred Hitchcock/Twilight Zone/Ray Bradbury story of my very own as the doctor finally told me that I “might” have MS but he wasn’t really sure so I should look it up online. But I digress. That really is a whole other story.

The point I’m trying to make here is that MRIs still suck after 10 years. BUT I’ve made it through each of them. They have come a long way in 10 years. The tubes aren’t nearly as long usually for me, perhaps there’s a bit more room, they may not be as loud (hard to say since each place is so different), I do have a pretty good idea of what’s going to happen, I know I can do it, I don’t have to get completely undressed and put on a gown (just had to take off my bra today or anything that had metal and was able to stay dressed–AMAZING), and I survived to write about it.

That’s something. It’s also not the hardest medical test I’ve ever had to endure.

I JUST DON’T LIKE THEM.

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Diagnosis Part 4: “9 Times Out of 10″

Posted on May 17, 2012 by Nahleen

In October of 2002 I’m guessing I was out of my mind.  I must’ve been.  What was I thinking?  I was working a full time job, I had just finished working as a Production Assistant on a “B” movie that I never heard about again, I was still working out and eating really healthy and then I decided that I needed to get a second job because I just wasn’t making enough money.  Hey, I was 25 and I was invincible right?

Wrong.

It was October in Los Angeles, CA so I’m guessing it was quite hot.  It usually is at that time of year.  I wouldn’t have known because I was too busy running around.  I worked full time at my day job in television which had its own stress.  I walked every day during lunch and worked out at least three times a week.  I ate well and I had lost almost 50 pounds.  My second job consisted of working in a linen store and running around lugging big bed spreads and other bed linens up tall ladders and dealing with customers.  Things were going well…I thought.  Yeah sure it was a bit hard on me but it would be on anybody.  I could do it.

Somewhere along the way as my feet continued to tingle on the bottom, I started feeling that dreaded tingling symptom travel up my left leg.  Then it traveled to my left arm.  Then my left hand.  I denied it.  I ignored it.  It couldn’t be happening.  An echo of a memory of my Primary Care Doctor’s voice rang in my head from months before, “Is the tingling going anywhere else up your leg or in your arm?” and I told him no and asked him why to which he replied, “Oh no reason.  It could just be more serious if it ever happens”…”ever happens”…”ever happens”.  Those two words rang in my head but I pushed them away.

Did you know it’s really hard to push that tingling symptom away when it doesn’t go away?  I waited two weeks until the tingling sensation then jumped from my left hand to my right hand and then I admitted it to me and somehow told Corey about it.  I wanted to be in denial.  I wanted to believe it wasn’t happening.  If I didn’t talk about it it would go away.

So somehow I got over myself and called my Rheumatologist to make an appointment.  I sat in that exam room and I told her about these new symptoms.  She looked at me long and hard and kept her facial expressions very still.  Then she said she wanted to order an MRI for me.  I freaked out.  An MRI?!  BUT it’s just tingling.  That’s all.  MRIs are to check for serious things.  I only had tingling.  That was all I had been told by how many doctors till then?  Somehow I got out the words and I asked her, “Why an MRI?” and she beat around the bush a bit and said, “Well your symptoms could be indicative of many things.  9 times out of 10 it’s not MS but it’s always good to check just in case.”  And she also made some comments about the lack of attention from my previous Neurologists and how she couldn’t believe I hadn’t had an MRI before then but that she’d get it taken care of.

MS????  What did it even stand for?  I didn’t know it stood for multiple sclerosis.  Why would I know that?  It’s not like we learn about all of the diseases out there during our normal lives.  What was that?  It sounded awfully serious.  All I could picture was those poor celebrities we had seen in the limelight who were in wheelchairs, if anything.  Then again, why would it be MS?  I hadn’t been diagnosed with anything else so there was no need to jump to any conclusions now.

So how did she calm me down?  Well she talked to me about her health problems and how she had just had to have an MRI herself and she told me the tricks of where to put my hands and how not to feel too claustrophobic and what to do when I was in the tube, etc.  She tried to show me how she could relate and some of what she said still sticks with me now when I have to have follow-up MRIs as part of my multiple sclerosis healthcare plan.

You know I somehow knew I had MS.  I don’t know how or why but something about it clicked for me.  I spent a lot of time contemplating it and talking about it with Corey while I waited for my HMO to go through the horrible rigamarole that was “necessary” to get me approved to have an MRI.  I had to wait at least a few weeks to be able to schedule my MRI let alone have one.

And you know all of this didn’t stop me from keeping up with my crazy full schedule.  To me I had no reason to slow down and stop.  Not yet anyway…

 

The next Blog will be about my 1st MRI experience.  It was a truly traumatizing and life changing experience for me that deserves it’s own Blog entry.

 

Thank you for reading my story.  It is so very hard to write but so necessary to express and share.

Categories: Diagnosis | Tags: , , , , , , , , , , , , , | 2 Comments

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