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Sunday, May 26, 2013

I FEEL GREAT!!!....Damn.....

If you have been following this blog for any extended period of time, you'll know of the medical issues I've had in recent years.  Functioning from day to day would be difficult enough, if I had just one of the many conditions that I am forced to deal with. 

As a quick recap, in June 2009, I was diagnosed with Tourette's Syndrome.  The following month, I was diagnosed with PTSD.  I had taken short term disability from work, from early February of that year, until mid-July.  When I came back, I lasted two days, before I was vomiting in the waste basket at my desk and crying in the bathroom stalls.  Needless to say, I haven't worked a day since.

In March of 2011, I started developing a number of unusual symptoms.  I won't go into details.  But, if you're interested, you can read more about them here.

So, March of 2011, I was diagnosed with a Chiari Malformation and Type 2 Diabetes.  A month later, I was diagnosed with a herniated disc at L5 S1.  In June, I had a partial discectomy.  In September, another partial discectomy and a spinal fusion.  No change in symptoms.

In January of 2012, doctors discovered a massive benign cyst, resting against the pineal gland, in the center of my brain.  It's inoperable, but everyone agrees that it shouldn't be causing any of the symptoms that I currently have.

In September of 2012, my allergist discovered that I have Sjogren's Syndrome, almost by accident.  He thought that some of my symptoms could be due to a food allergy.  I had been told before that I was allergic to gluten.  After testing 87 different foods (and gluten), everything came back negative.  I reacted worse to the saline, than on any of the allergens tested.  On a whim, he ordered an auto-immune panel.

If you're unfamiliar with Sjogren's, it's an auto-immune disease that attacks the moisture and mucus producing glands in your body.  The most common symptoms are dry eyes and a dry mouth.  It can manifest a number of symptoms that mimic other diseases, like lupus or Multiple Sclerosis.  Speaking for myself, I constantly have a dry mouth.  For someone that doesn't smoke, I certainly have had my fair share of cottonmouth and pot lip.  My nose gets so dry, that I have random nosebleeds throughout the day.  Also, the wax in my ears has all but disappeared.  I'm on medication right now to help me produce saliva.

Since maybe October or November of 2011, I have had increasing and worsening issues with pain and neuropathy.  Occasionally, I'll have electric jolts jump through my body.  At times, I have a sudden, sharp pain, as if someone had just amputated my hand or my leg.  Lately, I have pain on the soles of my feet and on my fingertips, that feel like a quick deep paper cut.  I have constant joint and muscle pain, often associated with lupus or a severe case of Sjogren's.

I also have an issue where, regardless of what I've done that day, my body shuts down at approximately 3PM every day.  It's not a feeling of exhaustion.  My brain literally starts shutting itself down.  Within a matter of minutes, I stop thinking clearly.  I start slurring my words.  And, if I don't get to my bed, I'll just fall asleep wherever I'm sitting.  Most days, I wake up not even remembering falling asleep.

I scheduled an appointment with my neurologist, because the pain has become unbearable.  I do my best not to take any narcotics.  I come from a long line of addicts and alcoholics.  Last thing I need is to become hooked on opiates.  In any event, I have been dealing with this long enough to know that my pain was neurological, and not rheumotological in nature. 

My neurologist had finally received the test results from when I was originally hospitalized in March 2011.  At that time, a spinal tap was done.  Both to test for Multiple Sclerosis, and to complete a CT myleogram to get a clearer image of my spine.  He said that the lab results showed extremely high protein levels in my spinal fluid.  If he was to diagnose me, solely based on those lab results, he would say that I have Multiple Sclerosis.  I have a full set of MRIs on Tuesday to check for lesions or demylination on the nerves in my spinal cord.  In the meantime, he was going to start basic treatment AS IF I have Multiple Sclerosis.  On Thursday morning, I was placed on a heavy dose of steroids.  My Lyrica was doubled, to 300mg twice a day.  And, I was placed on Clonodine.  In addition to helping with Tourette's tics, Clonodine works well in connection with other nerve medications, like Lyrica, to reduce nerve pain.

The last three days are the best I have felt in close to six months.  I haven't had that daily "crash".  My pain, both joint and nerve pain, are virtually gone.  I still have a little pain here and there, but it's nothing that a couple of ibuprofen can't handle.  Occasionally, I'll still get lightheaded.  I still have double vision from time to time.  But, I don't have the brain fog or confusion like I used to.  Honestly, I feel GREAT!

And...that's a problem.

It looks like I have MS.  It makes sense.  For years now, I've had every single symptom listed for the disease.  As of yet, I haven't had any detectable lesions.  Then again, 15-20% of those with Multiple Sclerosis have no lesions show on an MRI.  Maybe, I'm part of that 15-20%.

It's refreshing to finally see the light at the end of this tunnel.  I really believe that we're getting close to having a definitive answer.  No more guessing.  No more useless blood tests and MRIs.  No more clueless doctors.  I know what's wrong.

Holy shit.  I know what's wrong.  That's fucking scary.  I've seen MS progression in other people.  And, while everyone is different, I have an idea as to what to expect in the coming years.  It's not going to be pretty.  While medication and therapy will improve my quality of life, it's all downhill from here.  It's really a bittersweet moment in my life.

I'm still trying to wrap my head around everything.  This is something that, two years ago, every neurologist I spoke with said, "No.  It's not possible.".  I put the possibility of MS out of my head, and was able to focus my energy on those that were chronic, but not as debilitating. This is a difficult possibility to accept.

I really don't know where to go from here.  I'm going to have to make a number of big changes in my life.  We're living in the worst major metropolitan city in the nation for someone with MS.  Needless to say, Nadia and I are going to have to make some important decisions in the near future.

At least I have an answer.  It may not be the answer I've been looking for.  But, in the end, it's better than not knowing at all.


4 comments:

Unknown said...

Shit. Not the answer I was hoping for either. And yes, while it sucks balls, there's still a level of "Whew--at least we know now what we're dealing with". I love you, Sweetie, and your whole family. If there's anything I can do to help, just ask. xoxoxo

Rachel said...

Wow, bittersweet is right! I'm glad you seem to be getting closer to an answer but that's so hard!

Nicholai Black said...

Thanks, um..."Unknown". Sounds like you know me, but I don't know who you are...

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