At the age of 36 & having Multiple Sclerosis, can have a change on your life. All of this really began when I was around 29 to 31 years old. First, was my primary doctor. Then came an orthopedic. After Dr. Yeakley came Dr. Patee, my neurologist. Then I was sent to Bryan LGH, in Lincoln, to see Dr. Bingham, a vascular doctor. It would all end up at the Pain Consultants of Nebraska with anesthesiologist's, Dr. Donovan and Dr. Essay.
What my neurologists discovered, after the variety of tests that they performed, they wanted me to see Dr. Bingham. He was concerned with my nerves and he wanted me to see a vascular doctor to make sure my heart, arteries, veins, blood flow, on and on were not being affected by "whatever" nervous system that I had.
At first, they labeled it as being my C5 and my C6 being severed. Once your nerves are severed completely, there is no reversal affects that can take place. You can only prevent further nerves from being affected & deteriorating. It is why I have had (at my last count) over 36 different blood draws.
At first, because of the symptoms, they labeled it as being chronic & severe peripheral neuropathy. I was also diagnosed with Radiculitis, Neuritis, and Neuralgia. Before this, they wanted to make sure my vascular doctor could rule out RSD or Thoraci Outlet Syndrome (which is really your ribs putting so much pressure on your nerves that your nerves are being traumatized which gives you the immense pain & the symptoms).
After saying it was peripheral neuropathy, I had to undergo Ganglion Blocks. Then there came Nerve Block Surgeries that Dr. Donovan & Dr. Essay performed. I did learn many new things during this adventure. One, was how far technology had come since I was a little boy receiving weekly allergy shots & second, that their are pockets in between your nerves where they apply medication & steroids; among other medical things.
Finally, over a year ago they started saying it was Multiple Sclerosis & after a year of many more exams, blood work, tests, on & on; it was certain that it was Multiple Sclerosis. And as all patients are told who have MS, you have probably have had it for ten or fifteen years before the symptoms started to really take affect.
There is a huge difference, though, between peripheral neuropathy & Multiple Sclerosis. First, neuropathy is an inflammation injury, or degeneration of any nerve outside of the central nervous system. These nerves, known as peripheral nerves, help to make the muscles to contract (motor nerves) & allowing a range of sensations to be felt (sensory nerves). Peripheral nerves also help control some of the involuntary functions of the autonomic nerves, which regulate the sweat glands, blood pressure & internal organs. Peripheral nerves are very fragile & they can be easily damaged.
Multiple sclerosis (MS) is a potentially debilitating disease in which your body's immune system eats away at the protective sheath that covers your nerves. This interferes with the communication between your brain & the rest of your body. Ultimately, this may result in deterioration of the nerves themselves, a process that's not reversible.
Since I have had Multiple Sclerosis, I had to file for disability via the advice of my primary doctor, Nollendorfs & my primary neurologist, Patee. They had actually wanted me to file a couple of years ago, but I ignored & vetoed their recommendations. We all know how we have the choice to follow or not to follow our doctor's recommendations. It is just like we are all entitled to refuse medications & treatments.
Since my diagnosis' has progressed, especially in the last year, I eventually listened to them.
I have swallowed my pride, in regards of asking for sincere donations for medical costs, travel, medicines & other costs that I have & that I am incurring because of my MS. Since I have had to file for disability, I have absolutely no insurance or benefits & I have no monetary means. I cannot work.
I was denied & I am not eligible for SNAPS, or the like, because my car is valued above $5,000. This was a disappointment. We all know how important it is & how necessary it is to have a vehicle. We must have one. Especially, when you have no public transport, etc available to you (as with the town that I live in).
The last 12 months have been difficult, to say the least. I had to move from Lincoln to Norfolk. I had to quit my job of over 8 years & a job that I enjoyed & that made me comfortable. My entire savings has been depleted.
I love how neurologists turn on their laptop, hook some wires up to their computer & then measure from point A to B all the way to point Z, all over your body (with an actual tape measure) & then they start poking & prodding at your body with pins & zapping your body to see muscle & nerve responses. And no, you do not get medicated before all of this.
My medications alone are over $3,000 per month. Luckily & thankfully, there are patient assistance programs made available for people with no insurance & the main & the most important medications that I need are provided by the drug companies; such as Pfizer, Lilly Cares, AsterZenica, Johnson & Johnson, etc. Even with that, I still have a co-pay with every shipment & I still have other medications that I have to pay out of my own pocket every month for. In fact, there are four prescriptions, every month, that I must pay the total cost of.
Dr. Nollendorfs, my primary physician, has already provided my last two visits for free. I have been seeing her for the past six years. But all of my blood work & lab work is out of her control & is an expense to me. In addition, the B12 injections MRIs, X-Rays, ECGs, Cortisone Injections & other tests are out of the reach of the kindness of her heart & I must pay for these.
Here recently, I have had to see two more doctors. Here I have my C5 & C6 nerves being severed, a B-12 Deficiency, having a diagnosis' of Absence Seizures, my high blood pressure, anxiety and panic attacks (caused by the pain of my nerves); and Multiple Sclerosis.
I have my primary doctor, Nollendorfs, my lead neurologist Patee, two other neurologists, my lead pain doctor Donovan & then pain doctor Essay & I have two other medical doctors on this team of mine.
The diagnosis of Multiple Sclerosis (MS) is a scary thought. On May 2nd, I have to go to Creighton University in Omaha, to see a couple of more neurologists & I have to have more tests done & spinal taps.
My symptoms vary tremendously and they include:
1. Paralysis of different body parts & limbs when I wake up in the morning, awake from a nap, or if I am at "still" for too long of a time, if I have been enclosed inside of a car for too long I will start having paralysis.
2. I have issues with my speech (which includes both stuttering & the slurring of my words).
3. My balance is tremendously affected by this There are many times you feel like you are up in space & your body entirely does everything opposite than what it is supposed to be doing.
4. Then there are my hands & feet. My feet feel like they are on fire, are stiff, having the pins & needles.
5. There are a majority of the days that I am nauseated & fatigued.
6. My entire sense of grasp & reach is off (let's just say I have dropped a lot of things & I cannot hold onto things like I used).
7. There are days I cannot even type or grasp for something because my fingers are so stiff.
8. I have these constant sensations in my legs when I am at still & laying down. It is like a current of electricity is flowing throughout my entire body, but mainly in my legs.
9. I have intense tremors & twitches, where parts of my body start shaking or they start moving without my control (I like to say that my body part starts to "jump around.")
Importantly, my sleep is greatly interrupted by my MS, because it is hard for me to re-position or move, because, after a while, I have the paralysis of moving my body parts. If I try & move, let's say, my left arm, it feels like something is going to come through my skin or there are a dozen sharp butcher knives plunging in my arm. Mostly, your sleep is greatly interrupted, because you cannot get comfortable. It doesn't matter what you try to do, your comfort-ability level is greatly affected.
Since I have moved to Norfolk & since I have this team of doctors, one can imagine the costs. I have literally sold, almost, everything I own to pay for some costs.
For the past 12 months, I have not been able to see friends, go out, or do any of my hobbies that I normally like to do. Mostly, the hobbies I cannot do is because of the lack of the strength & the dead weight feeling that my body is subjected too.
I used to love coffee shops & the bookstores in Lincoln. They were my most favorite places to go & just relax & do what I like to do: talk with strangers & watch strangers. I used to love to sit at Barnes & Nobles & just write, but since my left side is more affected than my right, writing is really no longer an option (my left side is my dominant side). I can write, well, for about three-five sentence & then my hand goes completely numb, a tingling sensation begins & my wrist is sore. I used to be able to type over 100 WPM & I would be afraid to know the result of how many words I could type now per minute. I know it is less than half that it used to be.
The varying of pain & the different sensations cannot be timed & they cannot be expected. This is not a condition or diagnosis that someone can plan & we cannot plan around it. I can have a complete day full of nothing but burning sensations deep within my body. It makes you believe that your body is on fire from deep within. Or, you have a deep itching sensation that is like the burning sensation, so deep that there is nothing you can do. You could itch your skin raw & you still will have no relief.
Others pain levels are: intense throbbing & shooting pain; to inflammation building up; jabbing & Charlie-Horse like feelings; or constant bruising pain.
For those of you who know me the best, then you know I have always been an independent person who loves to work & who loves to be active. I have always been the person to help others out, when they were in need. It is like, since the last couple of years, my life has been turned completely upside down & I can no longer be that totally independent, happy go lucky & active person anymore.
I do not like self-pity & I do not like falling in the evil Satan paths of feeling sorry for yourself. We must provide & we must do for ourselves. The only problem is when that providing is beyond our own control.
So, I have swallowed my pride & I have decided to ask for some charitable donations in the form of monetary terms. This will help ease the burden off of my sister & her husband, help pay for travel costs that I have to do (like go to my doctor appointments 2-3 hours away & locally, picking up my medications locally & in Lincoln & to trips like the one I have on May 2nd, to University Hospitals for more testing), help with my medications every month & make sure my medical bills are getting some attention in the black :-).
In the end, if it wasn't for God, I don't think I would be the same person, in a state of mind sense, but would have already given up many times over. He will listen. He has provided me with my Strength, Guidance & with His lead I can continue for tomorrow.
What I ask of you is that you never be afraid to drop to your knees & rely on Him. He doesn't invade our lives. He wants us to seek Him out. He doesn't force someone to believe in Him &He doesn't support the idea of invading our lives.
I wish to thank you all for your generosity & support. If you are providing a donation, you are providing a means to receive my medications, to travel from doctor to doctor, to see my doctors & to make sure they get paid, on and on.
Truly, from the bottom of my heart, it means the world to me in how generous & giving our world can be.
Brian E. Splater