New Day, New Diagnosis.

Well, if you've read my last posts, you know I already have a diagnosis of CIDP. 

The partial laundry list of symptoms and side effects of just that disease include severe weakness, loss of reflexes, loss of grip in my right hand (I tend to drop things, a LOT), small and large nerve fiber damage,  Optic Neuritis, (I went completely blind in my right eye) neuropathy in my feet, legs right arm and right hand, a nasty twitch in the right side of my face and neck, Foot Drop, and partial paralysis in my right leg, arm and face, including my vocal chords.  It has progressed pretty rapidly since I first noticed the symptoms, so we started IVIG as soon as I actually admitted to myself I was no longer in remission.  My husband tried to tell me MONTHS prior that I was showing symptoms, but I hoped that if I ignored them, maybe they'd go away.  That didn't work out for me.

And for 18 very LONG months now, I have suffered from Occipital Neuralgia. 

I have had 3 separate cervical facet injections, as well as a Rhizotomy to attempt to minimize the pain, to no avail.  I can no longer wash, brush, cut, or dye my hair, nor can I even touch my scalp without high doses of pain medicine.  I have adopted ways to cope with this, but it's not fun. 

So, I had started this blog to document my journey through the treatment and recovery of both of these nasty diseases.  What I didn't realize was that I'd be adding to that list.

This week, I was diagnosed with "Stiff Person Syndrome".

It really doesn't sound that bad.  I think the name is fairly misleading.  It should be "Miserable Person Syndrome" or "Walks like a 90 year old Syndrome"

So, let me back up a bit.  I didn't think I had any new symptoms, and I wasn't prepared for this kind of news this week.

My neurologist had given me an order to get some labs done, which is fairly routine, due to the fact that IVIG can be pretty rough on my kidneys, and the sheer amount of meds I'm on can be hazardous to my liver and pancreas.  The blood tests were only ordered to make sure I was healthy enough (HA!) to continue IVIG infusions.

I joked as he wrote the order, and aked if he could run extra tests, to rule out cancer.  Because all I needed was to have to endure Chemo AND IVIG!  It's odd what you joke about when you're chronically ill.

So, the next day, Doug and I both went to Quest Diagnostics, because I was able to use the fact that he had to drive me to get my blood tests, I was able to force him to FINALLY get his blood drawn as well.  He had been putting off his blood work from his annual physical for 2 years.  As a wife, I was concerned about his cholesterol levels because of his eating habits.  I poke fun at him, (because he's 6'5"), and call him a Great Dane.  It's a known fact, the larger the person, the higher the susceptibility to heart failure, disease and coronary events.  So, I was happy we here both having blood drawn!

It took forever to check me in, even though I had an appointment, because of the sheer magnitude of tests requested on my lab order.  Doug was in and out, and because the poor thing had to fast the morning of, he left to get us both coffee while they figured out how many tubes they needed for me.  It ended up being 26.

A couple days later, Doug received a letter in the mail from his Doctor stating that he was in perfect health, and all of his blood work came back normal.  I can't tell you how happy this made me, but Doug, of course, said something along the lines of "See, honey, I'm PERFECT!"  

I, on the other hand got a phone call from the Neurologist's office.  My tests had come back abnormal, and I needed to get a full body scan as soon as possible, before my next follow-up appointment less than a week later, so he would have the results by then.  I naturally questioned the nurse about why I needed a full body scan, and was given a generic "He wants to rule things OUT, before he goes over the blood work with you."

Well, to say the least, I am not one to sit and wait for anything.  Especially if it has to do with my health.  So, I got a copy of my own blood results, and started Google-ing.  I made an appointment for the body scan the same day, and had to scarf down liquid contrast beforehand.  UGH.  When I called the Neurologist's office back to let them know I was done with the scan, I asked more about the tests.  I got an honest answer.

I had signs of massive inflammation, a super high white blood cell count, high platelet count and a positive Anti-GAD antibody result.  Without being Diabetic, that's not good.

If you have already clicked the link on "Stiff Person Syndrome" above, you already know what it entails.

But, I will sum it up.  In a nutshell, it is another neurological auto-immune disease that makes my muscles spasm uncontrollably.  Loud noises, anger, anxiety, even bright lights can set off a series of muscle contractions that I can't control. It can get to the point where my muscles can actually tear, or break bones in the process of spasm.  So, the nutshell part of it, IT SUCKS.  There are 3 stages.  Early, Late and End Stage.  Due to my symptoms, I am in the Late Stage.

I try.  I try as hard as I can to not let things bother me.  I'm on pretty high doses of anti-anxiety medication anyway, which seems to have helped.

You know what's awful about it?  I never thought to talk to the doctor about the pain in my muscles.  I thought I was just rapidly deteriorating from the CIDP, and if I stayed on the treatments, it would just get better. When it came to noise and other things making me tense up the way it did, I attributed that to stress!  I assumed my body was just responding to stress, and that maybe I was just a little crazy.  Because, REALLY, who wants to admit that when the kids are running around screaming, it actually made my entire body hurt?

So, here's the "Glass Half Full" part of it:
(Credit for any positives I find, go to my husband for teaching me how to find them.)

Positive #1: So many questions have been answered.

Positive #2:  I'm NOT crazy.  (Well, when it comes to THESE symptoms anyway!)

Let me explain;

We think I have had this disease for quite a while.  As in "We", I mean my husband and I.  But, the neurologist says that since I was already on IVIG, daily muscle relaxers such as Valium and Baclofen, it wasn't easily detectable.  Why, you ask?  Well, because the first line of treatment for SPS (Stiff Person Syndrome) is IVIG, combined with high doses of Valium and/or Baclofen.

I avoided SO MANY places because I thought I had some sort of psychological issue that made me tense up, and my entire body hurt.  I wouldn't go out to crowded bars, I steer clear of the "Play Places" in every single fast food chain, and sporting events?   Forget it. 

But again, I thought I had some crazy anti-social personality disorder that manifested itself in a physical way.

Now that I know what it is...I actually wish it were a psychological thing.  It would be easier to treat.  It certainly wouldn't be very easy to admit, (this is the first time I've even said it "out loud") But, yes, it would be a hell of a lot easier to deal with than SPS.  What an awful thing to say.  

I'D RATHER BE CRAZY.

There, I said it. 

That's just about all I can come up with on the positive side of this.


The negatives, well, there are too many to mention right now.  I think I'm still in denial, because it hasn't quite hit me yet. So, I will try not to call these negatives, I will call them FACTS.  Just plain old factual statements that piss me off. 

The facts: I now have a Grand Total of 3 Neurologically based Auto-Immune Diseases.

• The CIDP, with continued IVIG Infusion treatments can be shoved into remission, and once in remission, maintenance infusions are scheduled to keep you in remission.  CIDP remission can last from moths to years. 
• The Occipital Neuralgia, although  horrible, can be surgically helped, or even eliminated completely.  Since the Rhizotomy didn't work, I need a Neurosurgeon to cut the nerve, but it CAN be done by the right doctor.  *NOTE- I have been trying for months to get into John's Hopkin's to accomplish this goal, but we are having some paperwork issues* (Pet Peeve Post includes the details of this-Coming Soon)
• I now know the SPS is the reason behind my disc herniations that seemed to come out of nowhere.
• I now know that SPS is the reason my Pain Specialist said he had "never seen a Cervical MRI that was in such a straight line" before.  (Due to the muscle spasms in my neck, it doesn't curve like it should)
• I was looking forward to the end of my course of IVIG infusion treatments, but now that I have been diagnosed with SPS, I can not stop them.  If I do, the spasms will get worse much faster.
• There is no cure.  Just symptom and pain management.
• The muscle spasms can get so bad that my bones can fracture and even break, especially as I get older.
• My muscles can literally tear themselves apart.
• This disease only affects 1 person per 1 million.

Okay, so, those are the negative, shitty facts.  Here's my list of facts in response to all I have learned so far about this disease, and the ones I already have; My own personal goals and positives.

• I always knew I was One in a Million.
• I can POSSIBLY get the symptoms to "Plateau". (meaning they can stay the same for a long while)
• I WILL dedicate myself to my treatments, and stop being so stubborn about taking medications I hate.
• I will NOT dwell on what COULD happen, I will focus on each days challenges.
• I will NOT let ANY Doctor, Nurse, or Medical staff slack off regarding my care ANYMORE.
• I will continue to be my own advocate when it comes to fighting for quality compassionate care from not only Doctors, but their office staff as well.
• I will not take NO for an answer when my Insurance Company denies YET ANOTHER medication, procedure, or treatment.
• I will educate myself on every aspect of all of my diseases, and  try every treatment available to improve my QUALITY of life.
• I will try my hardest, every day, not to let all of this bring me down.
• I will allow myself to take a break from being tough, and cry it out every once and a while, and stop pretending I am made of stone.
• I will ask for help when I need it. (After, of course, I'm stubborn first. :)
• Even on the days I want to hate the world, I will remember that my incredibly beautiful husband is in my corner, and try my hardest not to take out my self pity on him.
• I will teach my children, and the rest of the world that DISABLED does not mean BROKEN.
• I will still follow my dreams, be passionate about what I believe in, and show my daughters how to do the same.
• I will try to remember, even on my roughest days, that I have never let anything stand in my way before, and there is NO reason to let anything stand in my way now.   

• I will NEVER give up.

So, for those of you reading this, I can't thank you enough for just taking the time to connect, and listen to me vent.  I don't sugar coat anything, and have vowed to be brutally honest on this blog, throughout this journey.

Please know that this blog is for my own therapeutic reasons.  I also have severe memory deficits at this point in the illnesses, and it may be helpful one day to be able to come back here, and read about all I went through.  

I also aim to help other people in my situation, or similar situations, by letting them know they are not alone in this world.  

And like I said in an earlier post, I would love a Doctor or two to skim over it, and maybe, just maybe, it will prolong them from selling out too soon. 

I added links to a lot of the text, so if it's highlighted, it will open a new window with either a Wiki page or information page.

That's all for now.  I will probably write lots more about this new diagnosis as soon as it actually sinks in.  

I think I might have forgotten to mention that part; The news of the Stiff Person Syndrome hasn't hit me yet.

Not kidding.