Tuesday, December 23, 2008

Good Lord what next??

*sighs*... so I went to the neurologist again today. As I already knew, my spinal tap was positive for Multiple Sclerosis. They are starting me on Copaxone, a nurse is coming to the house to teach me how to give myself the injections next week. I can deal with this...I was expecting this, and am actually relieved to finally be starting treatment.

But then she started asking me all these questions- questions that have nothing to do with MS. About any joint pain, rashes, family medical history, etc. I answered yes to the majority of them, getting more and more nervous about where this conversation was going with every passing second.

Finally, she goes "well.. I have to send you to a rheumatologist. You not only showed the protein for MS in your spinal fluid, you tested positive for Lupus as well".

Excuse me??? And yes, that was my response to her. Lupus? You have GOT to be kidding me. She went on to tell me how the original blood work in the hospital showed some ANA thing in my blood, which is positive for Lupus. (new news to me, hence why I changed neurologists) So as a precaution, she ordered my spinal fluid tested for it as well. Low and behold...it came back positive. She said sometimes one disease can mimic the other- and that is a possibility. But what concerns her is the fact both the blood work and spinal fluid came back positive, and the symptoms I have had over the last couple years that are more of Lupus than of MS. Because with the original MS diagnosis- I still had some odd symptoms that didn't fit. Her concern is now that I actually developed Lupus right around the time I had my son, and developed MS afterward.

So I came home, and of course researched Lupus like crazy. And... I just cringed the more I read. Way too many symptoms that aren't MS at all- but are definitely Lupus. My stomach turned as I read how MS is one of the diseases people with Lupus are prone to developing as well.

Here is Wiki's definition of Lupus:

Systemic lupus erythematosus (SLE or lupus) is a chronic autoimmune disease that can be fatal; however, with recent medical advances, fatalities are becoming increasingly rare. As with other autoimmune diseases, the immune system attacks the body’s cells and tissue, resulting in inflammation and tissue damage. SLE can affect any part of the body, but most often harms the heart, joints, skin, lungs, blood vessels, liver, kidneys, and nervous system."

...and I found this:

"Can a lupus patient get another autoimmune disease?

Yes, & it is quite common. Antibodies can develop against a variety of organs, tissues or glands, resulting in many different diseases. Among the most frequently experienced autoimmune diseases for a lupus patient to have are Sjogren's Syndrome, multiple sclerosis, & Hashimoto's thyroiditis."

So...yeah. This is not looking promising at all. Even my dad, who is very honest and who's opinion I value greatly especially on medical issues, said he thinks from the tests and symptoms I likely have both Lupus and Multiple Sclerosis.

I can handle having MS, I really can. I've accepted this. But Lupus too? I have to wonder who's Wheaties I pissed in for God allow me to have both. I think what scares me most is said quite plainly in the first line of it's definition: "It can be fatal". So I think to myself, my God, if it can be fatal all on it's on, what if you have MS with it too????

I am....struggling. Really really struggling. I am more afraid now than ever.

I'll write more another time soon... when I have had some time to wrap my brain around this.


Thursday, December 18, 2008


Well... it's been another trying couple weeks.

I had my spinal tap done last Wednesday. Truth be told, the actual spinal tap wasn't bad at all, in fact the anesthetic hurt worse than the actual tap. Now... afterward? That... is a whole different story.

After a spinal tap, you have pretty much not get out of bed for 24 hours except to use the bathroom, drinks tons of liquids, and load up on caffeine. The reason being is takes time for your body to regenerate the missing spinal fluid, and the imbalance causes headaches whenever you doing anything but laying down. I did this- exactly as directed. The first night, my back went into spasms. It was pretty bad- at one point I literally got stuck, unable to lift my head or roll over, because it hurt too bad to breath let alone move. I ended up in tears, yelling for Wayne, who had to help me just roll into a tolerable position. After loading up on muscle relaxers and Lortabs, I was finally able to fall to sleep.

The next morning... I sat up...and WHAM. I am not kidding you, it was like someone smacked me in the back of the head with a 2x4. I've had migraines in the past, but this made the worst migraine I've ever had feel like a trip to the park. I was instantly nauseous, unable to tolerate any sounds or light at all. After staggering to the bathroom, Wayne helped me back in bed, then proceeded to put two blankets over the window to blacken the room and put a bucket next to the bed in case I hurled. When I laid down- the headache almost instantly went away. But the minute I raised my head even slightly- it was simply unbearable.

Well... after about 24 hours of this, my doctor told me to go back to the hospital. They wanted to do a "blood patch". The headache was the result of a tiny leak of spinal fluid from the tap, and they wanted to take my own blood and 'patch' the leak. So... back to the hospital we went. They then proceeded to take 40cc's of my blood (which, is quite a bit actually), and inject it into my spine. The good news? It literally cured the imbalance and headache instantly. The bad news? I now had not one, but two, black and purple bruises on my spine. If my poor back wasn't already totally jacked up from the tap- the patch definitely finished it.

I spent the next few days doped up on muscle relaxers, and my back slowly begin to relax and heal. Then yesterday, I had to go into my neurologist so she could test my muscle and nerve response. Ok fine, I'm thinking. Little electrode thingies, a little tingle, no biggie. And, for the nerve portion of the test, I was right. Imagine my surprise when she pulled out what can only be described as looking like a sharp metal shish-kabob skewer connected to a wire and announced "ok Melissa, now we need to check your muscles".

I just stared a moment, and finally responded "you're going to stick me with that, aren't you?" That is when she explained it needed to penetrate the skin deep enough to touch the muscle for accurate results. Ohhhh yay me- more poking and bleeding, and this time I get an electric shock with it too! *rolls her eyes sarcastically* And it wasn't just a few spots, either. I now have tiny bruised welts all over me from everywhere she stuck. One on each foot, one on each hand, three on each arm, four on each leg, two on the back of my neck, and four on my back. When she did my back, she commented "oh there's your lumbar puncture site- I can tell from the bruising". Mind you, I really really like my neurologist a lot. She's a very compassionate woman with a great bedside manner as well very very good at what she does. But at that moment...when she made the observation about my bruised back... I couldn't even verbally respond, I only sighed and nodded. Why? Because in my immense frustration and aggravation, I could literally feel my sarcastic smart-assed nature about to take over. What I wanted to say was "No shit, Sherlock. Maybe with these new bloody bruises you're adding back there, you can play a nice game of connect the dots!" Of course, I didn't say that, but man I wanted to.

So, here I am. My back is still achy but much better. The bruised welts are only an ugly green color today, an improvement from the lovely bluish-purple they were yesterday. And yes, I survived these latest rounds of tests. Forgive me for the pity party that is about to follow... but I swear to God, the next person who comes at me with a needle, I am going to jam into their freak'n eye. I just...blah. I'm so tired of people taking blood, injecting me, withdrawing from me, poking me... I feel like a human pin cushion. I am seriously starting to lose track of all the times I've been poked, made to bleed, scanned, probed, electrified, and examined. I am TIRED. I used to have a bit of a fear of needles, but now, I honestly don't even flinch. It's just like another part of my life. Everywhere I go someone is sticking one in me. I honestly can't remember the last time my arms weren't bruised from IV's and blood tests.

*Sighs*... there, I've had my little ranting pity party. I know I'll get over it, and I know this is all necessary, I'm just once again struggling a bit depressed. You can accept something like MS and all the tests that come with it- but that doesn't make it any easier to live with.

I go back to my neurologist again next week for the spinal tap results and the results from yesterday tests. I already told her that my opening pressure on the tap was 34- which concerned her. That's pretty high I guess, which means my brain has some swelling. So, with that in mind, I'm not real hopeful for the rest of the results. Regardless, I will write another post sometime on 12/23 to let y'all know what the actual results were.

Have a great day all...despite my little temper tantrum here :P