… everything you never wanted to know about Angel …

My Ride

 

This page deals with “My Multiple Sclerosis Roller Coaster Ride“.

For me, MS has become one of my life’s toughest challenges.

My father’s sister had MS, and I spent a lot of time with her when I was in high school. She was diagnosed when she was about the same age that I was when I was diagnosed (35 years old), and she died of pneumonia, which was defined as complications from the MS, when she was 49. One of my passions is genealogy, so when I learned that my father’s maternal grandfather’s cause of death in 1949 was listed as complications from Multiple Sclerosis, I was a bit terrified. Even though the experts claim that MS is not hereditary, my youngest sister was diagnosed with MS in the Spring of 2010…

To be perfectly honest, I hate this damn disease: what it does to my body, my emotions, my family, and those that I love…

I was “last” diagnosed with MS in August of 1998, but my roller coaster ride actually started in 1994 when I “enjoyed” the privilege of meeting the fine folks within the “cattle call” system at Mayo Clinic in Rochester, Minnesota.

The Beginning…

In 1994, my family doctor in Allegan, Michigan, after reviewing my life-long medical history and (then) current problems of numbness, falling, and mild paralysis, felt that he was dealing with MS, so he referred me to a neurologist in Kalamazoo, Michigan.

After a thorough battery of tests (usual blood work, EEG, EMG, EKG, and MRIs) nothing definitive showed up in test results, so they sent me off to the great gods of Mayo. I was not impressed.

There is NOTHING worse when a person doesn’t feel well, then to be made to endure the “hurry up — next — wait over there — I know I am the 15th person you saw today, but can you tell me why you are here” scenario that is the reality at Mayo Clinic. No wonder they charge so much… and then to top it all off: they sent me home with a diagnosis of “Fibromyalgia”.

Now, as I may have mentioned earlier, I prefer to use the brains God gave me and find answers to my questions from more than one source: I was raised by the old “believe half of what you read & nothing of what you are told” philosophy! I wanted to know for myself what Fibromyalgia was and what its symptoms & treatment options were…

Needless to say: the first bit of info that I learned while at Mayo is presented in a class that all newly diagnosed were required to take. After the class, I was more confused than ever.

I learned that Fibromyalgia has been called soft-tissue rheumatism because it primarily affects the muscles. In some cases, fibromyalgia may also include bone pain. The symptoms of Fibromyalgia may include:
* Muscle and joint aches with tender “trigger points”
* Muscle stiffness throughout the body
* Disrupted sleep
* Pain, ranging from an aching, flu-like discomfort to more severe discomfort
* Cognitive difficulties
* Irritable bowel
* Headaches

According to the CFIDS Association of America, the following symptoms are required for a diagnosis of Fibromyalgia:
* Widespread pain lasting a minimum of three months.
* Pain located in at least 11 of 18 specified tender points: neck, shoulders, chest, hips, knees, and elbows.

I wasn’t experiencing ANY pain, I was just falling down A LOT, “enjoying” this weird sensation of numbness in my face, hands, feet, chest, and legs, along with an intense burning sensation. And, oh, did I mention that really cool “slinky” feeling I got in my neck whenever I dropped my chin to my chest? That was awesome, but it didn’t list ANY of these things on the Fibromyalgia sheets…

So, needless to say, I rode home from Minnesota, a few thousand dollars poorer and a whole lot more frustrated!!!

But, I decided that since the great gods of Mayo couldn’t tell me what was wrong with me, I would just act like there was nothing wrong (obviously they weren’t too concerned, so why should I be, right?)

Two years later…

Fast forward to July 1996. I was working on a contract in Phoenix Arizona. I drove out there in my 3 cylinder GEO Metro Convertible (choose one: drive over 55 mph or use your air conditioner… hmmm). I worked for a whole week in an air conditioned office, and spent as little time as possible on my smoke breaks in the 110+ degree temperature. About 10 days after my arrival, I noticed this angry red rash starting on my stomach!! Hurry – call in the poison control: spider bite? No, its not a poisonous spider bite – but it is adult chicken pox… ok… Take this Prednisone and Vicodine and go back to Michigan where summer temperatures are 90 degrees or so….

Next, on to Virginia for the summer and fall of 1996. I started falling down a lot again, but my co-workers figured I was either: A) a lush, or B) a klutz, or maybe C) both? Worse case scenario: I had no pride, and was forced to increase my panty-hose allowance! OH Well!

Love & life & LOTS of stress…

In March of 1997, I was married to an Arab that I had met while working in Virginia. I statrted a new job in July but in mid-August, unfortunately, I developed optic neuritis in my right eye and then immediately lost feeling in both legs and was soon after diagnosed with MS!

But wait — the roller coaster ride is not over: hang on to that handle as we prepare for yet another twist and turn on this wonderful fun-filled ride!

Diagnosed as Chronic progressive MS…

Starting with my first head-long bout with Optic Neuritis in August of 1997, my “MS Roller Coaster Ride” got really wild!

After numerous MRIs, three seperate IV Solumedrol treatments, a week long stay as an inpatient in our local hospital, receiving (thank God, only) one dose of Cytoxin chemotherapy treatment, and then a few weeks of at-home physical therapy, my life was in a shambles! My doctor put me on weekly inrtra-muscular injections of Avonex®, then changed it to daily Copaxone® sub-cutaneous injections because of the Avonex side effects. I felt sicker then when I started thanks to all of the side-effects of ALL the meds! I was not able to work; I had no income; and was falling behind in ALL my bills while I was waiting for the completion of the “elimination period” on my STD (Short Term Disability) benefits.

In the meantime, my three-bedroom Victorian Michigan farmhouse was foreclosed on; I was forced to sell ALL of my furniture, antiques, and possessions at auction or yard sales; and my car was repossessed. But to top it all off, in January of 1998, my neurologist in Fair Oaks, Virginia, started making comments to me about how he was not thoroughly convinced that his initial diagnosis of MS was accurate — maybe it was just “stress”!

Note: this would be an appropriate place to interject one of my daughter’s favorite comments: “Sucks To Be Me!” dork!

By February, 1998, I was transferred to LTD (long term disability) and my employer decided to terminate my employment. They sent me all of the paperwork for the continuation of the insurance coverage through COBRA. Fortunately, my LTD payments were consistent and regular, so I felt that the $500 per month investment was necessary in order to continue my health coverage. Logic dictated continuation, after all, the Copaxone® injections alone cost more than $1,000 a month!

One of the requirements of the LTD program was that I was required to apply for Social Security Disablity payments (to be transferred to my LTD carrier). I was quite skeptical about receiving any benefits because I had heard MANY horror stories about how difficult it is to become eligible for SSDI. I applied in March, and started receiving money in May. I was thoroughly astounded! Finally, I felt blessed!!!! And to top it off, even though was able to return working, from my home but making my customary wages, the SSDI benefits for myself and my 2 children, were to continue for 9 months!

But, again, I digress from my “roller coaster”….

No, maybe its relapsing remitting and you are “remitting”…

In April of 1998, my (Fair Oaks, Virginia) neurologist reported that I was able to go back to work. Good-bye disability benefits! By this point, I was SO disgusted with the ups-and-downs of the diagnosis (or more accurately, the lack of diagnosis) that I basically said “to hell with all of it” and I closed my mind to the MS attacks, diagnosis, and the whole plethora of associated “goodies”! I decided that I was perfectly fine and was only experiencing some “aging pains”! After all, I had LOTS of stress in my life (a lot of which was brought on by the damn disease) and I decided that I would use the healthy living and my grand-mother’s “mind-over-matter” approach: “if you don’t mind, it don’t matter!” !!

On May 10, 1998, I quit smoking (with the help of a little Zyban), I stopped all of my Copaxone® injections, stopped taking Prozac, threw away my Baclofen, and tossed the Klonapin, as well. I went on a fat-free, cholesteral-free diet, and got a great paying job in Cleveland Ohio, where I was told that I would be able to work from home after an initial 2 week “get-to-know-you” period! Life was grand!

I felt wonderful! I put away my wheelchair, loaded my Dodge Caravan with all my work supplies, found a hotel in Clevelend that I could rent 3 days a week, and started working 40 and 50 hours a week. I would leave my Van with all of my things locked at the airport and fly home for long weekends. One morning in July, I awoke in my hotel room and was unable to feel my arms or legs and my face and mouth had gone numb, as well. I called my husband, then the airport. Fortunately, my wheelchair was in my van, but I never imagined what a nightmare it can be to attempt travel with a wheel chair. No matter how far we have come with ADA regulations and laws, this country is NOT designed for people in wheelchairs!

I safely arrived home and took a cab home because my husband was too busy delivering pizzas to pick me up at the airport. I called my (Fair Oaks, Virginia) neurologist to schedule an appointment as soon as possible, but he did not appear concerned – or at least this was my impression when his staff made the appointment for 10 days later, even though they claimed that they personally spoke with him about my symptoms. I “patiently” waited for my appointment, then, on that day (honest-to-God!!!), our electric went off and I woke up late for the appointment! Needless to say, even though we drove to his office, he was not able to see me, so his staff rescheduled the appointment for the next week. She wrote down the date and time on one of their appointment cards, and sent me home. I immediately called my friend who had been trying to convince me to see her neurologist, so I got his name and number in Fairfax, Virginia, and had my PCP (primary care physician) make a referral.

I called the new neurologist in Fairfax, spoke with his staff, explained my whole frustrating recent experience, and they scheduled an appointment for the following day! I asked my husband to drive me to my PCP so I could get copies of all my records to take along with me, and even went to the hospital to get copies of the MRI films.

Don’t leave yet — the really nasty stuff is coming!

No – its just psychosomatic…

Before my appointment with the “new” neurologist in Fairfax, Virginia, I reviewed everything that was in my file from my Primary Care Physician (PCP), which included letters from the “old” (Fair Oaks) neurologist. The letters dated in the Fall of 1997, when he first started treating me, described how my MS appeared to be the very intense form of the disease. But, coincidentally, by Spring of 1998, his letters specifically stated that perhaps my problems were more of a psychosomatic nature, as there appeared to be no further (new) lesions on the spinal MRI films.

Needless to say, with documents in hand, and a confirmed appointment, I called the next day to cancel my appointment with the “old” (Fair Oaks) neurologist. (One final ironic comment: apparently, the appointment date was incorrectly recorded on the card that I was given: it had been for THAT morning!!) duh!

Let’s Try Again: “Testing: 1-2-3” ~ and the diagnosis is…

So, off I went to meet my new doctor in Fairfax, Virginia. I have not used any doctor’s names up to this point, but I will specifically mention that the neurologist that I was to meet is Dr. James Simsarian. (If you know much about MS, you might remember seeing Dr. Simsarian on CNN’s Larry King Live show when they did a broadcast in early 2002 with a panel of patients who have MS, and Dr. Simsarian was included because he was the President of the Consortium of MS Centers, and he is still on the CMSC Board — as of Feb.2003.) I was immediately impressed with the professional atmosphere of this office, and equally impressed with the no-nonsense approach of the doctor. He explained that his plan was to rule out all of the “easy” disease options, then order tests to see where we stood on the more vague diseases (like MS). He ordered a Lymes test (why hadn’t neurologist #1 thought of that?) and a spinal tap (yippee), and a brain and cervical and thoracic spinal MRI set (with and without contrast), and finally, a set of evoked potentials. This $8,000 worth of testing took place during the months of July and August and I returned to his office the end of August to review all of the results.

The doctor tried his best to explain his diagnosis in terms that I could understand. He told me that the “atypical” label on my MS diagnosis still exists. There were proteins in the spinal fluid, but they didn’t jump out as MS or Lymes. My Lymes index was elevated, slightly, so they did 21 days of oral antibiotics (“just to cover our butts”), but the Infectious Disease Specialist was convinced that we were not dealing with Lymes disease. The cervical spinal cord MRI showed a couple of new lesions, the thoracic MRI showed evidence of de-mylenating activity, but the “clincher” was the amount of new activity in the brain MRI, which included evidence of active breakdown of the blood-brain barrier (don’t ask me what this means: I am just the patient! LOL! ) The evoked potentials didn’t show any major evidence of problems, so the doctor put me back on the Copaxone® and some other meds and I went home, slightly depressed, but at least relieved that the DIAGNOSIS portion of “my Roller Coaster Ride” had come to an end!

In Sickness and Health (yeah, right!)…

I was fortunate enough to find a computer contract where I could work from home (I’ve spent my entire career-life as an application design computer consultant), and with the continued Copaxone® therapy, I was able to stay in a “remitting” mode so I could continue working.

In late summer of 1999, we moved back to Michigan, built a home, moved into our new home in the Spring of 2000, and my long-term remission and “normal life” came to a crashing-end the same month that we closed on our new house!

I started seeing a neurologist from Kalamazoo, Michigan — who had been recommended to me by the MS clinic at Wayne State University in Detroit. I was not impressed with this older doctor — but, hey: HE’S a doctor == I’m just a mere mortal!

My worthless-husband (ok–we won’t go there!) was not working, and we seperated in October of 2000, so the stress of trying to support my children with no income other than disability, no health insurance to pay for medications, and the added stress of the divorce, sent me into a major relapse.

I’ve learned to know the warning signs of an impending exacerbation of my MS well-enough to know what’s going on — but this (Kalamazoo) neurologist told me that my health problems (couldn’t walk or feel my legs!) were just stress-related to the divorce!

In March of 2001, I learned that my (hopefully, soon-to-be-ex-) husband added me to his insurance through his employer…. (don’t ask me why he waited until after we were seperated — I promised I wouldn’t go there!) The only “drawback” to the insurance was that I had to change doctors and could only see them or be treated at the hospital in St. Joseph, Michigan (about 30 miles from where I was living).

The end of March, before even getting a chance to meet my new doctors, I had a major exacerbation that left me in the hospital for about 4 weeks and took about 3 months for recovery.

My new neurologist (from St.Joseph, Michigan) hospitalized me and ordered a 5-day 1000mg IV Solumedral treatment, followed by 3 weeks of PT and OT in the hospital’s rehab center. She also took me off the Copaxone® and started me on Betaseron® (which was kindof nice, because it’s an “every-other-day” injection, rather than daily).

My divorce was finalized in January 2002, and once again, my MS cost me my home. I’ve accepted that “things” aren’t important — people and how we live our lives is what matters most!

God has been faithful in His promise to meet all of my needs, and I am greatful for all of His loving kindness!

Continuous Ups and Downs… My Continuing Diary of My Ride!

MAY 2002 entry…

I haven’t been hospitalized since last spring, but I have refused any more IV Solumedral treatments. I take my wheelchair with me when I’m going shopping or plan to do a lot of walking so that I don’t wear myself out.

The newest specialty doctor added to my “team” is a Urologist (they want to teach me how to “self-cath” — sure, no problem: lets see-I have very limited dexterity and sensation in my hands and fingers and no sensation “down there”, so I wonder what magic trick are they going to teach me so that I can “self-cath”–this outta be great fun!), and other than intermittent paralysis of my arm, (and newly discovered kidney stones-more fun!) fatigue seems to be the “biggest” problem that I have to deal with.

JUNE 2002 entry…

I really don’t mind being alone, most of the time… but there are SOME things that really scare me: being lonely, not wanting my children to be my “care givers”, and losing my eyesight!

I know it may sound goofy to some, but if I lose use of my legs, I’ve learned to deal with that… hey, it’s a pain-in-the-butt, but that’s what wheelchairs are for!

Losing use of my hands bothers me because I had to give up my career: you can’t program computers if you can’t type! But I can “hunt & peck” when the paralysis affects my arms and hands and fingers…

BUT, please God, I don’t want to lose my sight! I guess this means that I’ll even break down and let my doctor order more IV Solumedral treatments if it means that I can see…

JULY-AUGUST 2002 entry…

I survived a 3-day IV Solumedral treatment and 30-day Prednisone taper, and life is much more “normal”.

My baby brother got married this month — but MORE importantly — my oldest daughter and her family (read: my 2 grand-daughters!!!) came home to Michigan for the wedding… And even better than that: (yes, it does get better) I am going back to Spain with them for a month! I am soooo excited!

AUGUST 2002 entry…

Spain was beautiful, as always (but hot!), and I had a wonderful time getting to know my grand-daughters: Ashley and Vanessa. My computer and digital camera went with me (of course) so, I have over 300 pics that you can take a look at (if you have one of those nights when you can’t sleep LOL!).

SEPTEMBER 2002 entry…

Got married this month in Arkansas… Robert and I met in Michigan but we decided to get married close to his family (his Mom and 2 of his 12 — yes, thats TWELVE — sisters joined us for the civil ceremony at the courthouse)…

JANUARY 2003 entry…

I don’t want to hear: “I told you so”…. My vision started getting funky on me in my left eye over the Holidays, then it worsened… On the 27th of December, I saw my ophthalmologist and he diagnosed me with Optic Neuritis in my left eye…

Because of the way Medicare works (government: no logic here!) — the only way I could have the prescribed IV Solumedral treatment that my neurologist ordered, was if I was an inpatient in the hospital —- PASS!!!

Do you remember a comment that I made, long ago, about how tenacious (ie. stubborn) I can be? Well, without the IV Solumedral, not only did my vision worsen, but I started experiencing extreme spasms in my calves, thighs, back, and shoulders! The pain became so unbearable that my family took me into the ER, where they had to sedate me with Morphine (that was a first for me!). I spent 3 days as an inpatient, and endured the 1000mg per day of the IV Solumedral. My veins are shot — they collapse, roll, and “blow” — so getting an IV in me is becoming the newest challenge!

My doctor also increased my Neurontin and Baclofen, and prescribed the normal Prednisone taper when I was discharged… so I spent the next few weeks at home — irritable, eating everything in the house, not sleeping more than 2 or 3 hours a night — and I still have Optic Neuritis and increased muscle spasms!!!

At what point do you tell the doctors “STOP”::
# When they start prescribing medication to counter the side effects of the medications that you are taking?
# When the effectiveness of the treatment is not guaranteed AND the side effects of the medication/treatment are so severe and many that you require more medication or additional pro-active tests because you can develop addition health problems?
# When you feel worse after the treatment than you did before?

Deep thoughts…

DECEMBER 2003 entry…

HAPPY HOLIDAYS!!!

Well, this has certainly been a blessed year for me! Health-wise, my MS is in “remit” mode! My COBRA benefits ended in January of this year, so I’ve been dealing with medical issues with on Medicare — fun, eh? No prescription coverage, so around April of this year, I stopped taking most of my meds — especially the really expensive ones!

I’ve had a great year! I now have FOUR beautiful grand-daughters, got to go to Spain for a couple of weeks to meet the newest little one who was born in June, and my grand-daughter, Cecelia, stays with me during the day while her Mommy is at work! Cecelia will be ONE in January, so she is starting to walk a bit, and !!my goodness!! what fun we have together! I am truly blessed.

I’ll write more after the holidays — am working hard on “not working too hard” for the holidays! LOL!

JANUARY 2004 entry…

Wow! I cannot believe how time flies! I guess that old saying about how the months seem to come and go quicker the older you get is true!

I survived the holidays and my health seems to be doing “so far – so good”!

I am back on most of my meds, with the exception of the Betaseron® (just can’t seem to be able to squeeze that $1500 a month out of my {less than that} income! duh…) I’ve noticed that my legs and back are cramping up more often (again) and I can’t seem to get a good night’s sleep without my meds … so …

AUGUST 2004 entry…

Moved to Missouri since Robert got a job in Poplar Bluff… Bought a cute little 2 bedroom house that needs LOTS of work… Of course, moving was stressful!

OCTOBER 2004 entry…

MS relapse, no surprise! Ended up in the hospital in Cape Girardeau for 3 days, un-enjoying the Solumedral treatment and it’s accompaniments…

MARCH 2005 entry…

Found a local neurologist… and, guess what ~ “No, I do not believe you have MS”!!! Arghhhhh!!! I had to have him explain the significance of the lesions on my brain MRI!!! Good-bye, keep the copay and I won’t see you again!

FEBRUARY 2007 entry…

I got a job!!! I am so excited! I will be working from home for a Center for Independent Living… My official title is “Applications Analyst” and I will be working on the website and other technology-related tasks for the Education department! I am so happy that I will be able to have a reason to wake-up every day!

SEPTEMBER 2008 entry…

Got a great promotion at work ~ am now a”Research Analyst” and am starting classes to earn a Bachelor’s degree in Sociology through Columbia College in Columbia, Missouri… Classes are online but I’ll take foreign language classes at our local community college…

AUGUST 2009 entry…

Well, it’s official ~ Robert and I got divorced this month… I got the house and my van refinanced in my name and he got to keep his truck…

DECEMBER 2009 entry…

I finished my Bachelor’s degree this month! Wow! In spite of this damn disease, I have been able to work full-time and complete my degree with a 3.92 gpa! I am soooooooooo proud of myself!

MAY 2010 entry…

Lost my job and my house, selling everything that I can, and moving back home to Michigan… what fun!

JUNE 2011 entry…

Well, the MS Ride has been relatively quiet for the past year or so! I spent the last eight months in Madrid, Spain with my oldest daughter… Good times!

AUGUST 2011 entry…

Good News: I finally found a neurologist that specializes in MS!! :)

Bad News: his office is in Grand Rapids — a 90-minute drive!  :(

DECEMBER 2011 entry…

Mom took me to see Dr.Sullivan (in Grand Rapids) and I have started the pre-Gilenya testing… OCT (Ocular Coherence Tomographery), EKG, and blood-work are the first steps…

I’m continuing with the Ampyra ~ it has really helped me walk better…

and as always, the RIDE continues….

 

The END? NOT!! It’s A Never-Ending Story…

So, now you have traveled for a while with me on my never-ending “Multiple Sclerosis Diagnosis Roller Coaster Ride!” Please come back for another free ride, as I hope to make time periodically to update this page, and check and add info and links…

I have my “good” days and my “bad” days, I stay in my air conditioned apartment as much as possible in the summer, and take my daily naps to avoid extra fatigue.

The best lessons that I am still learning are:
#1) to take one day at a time, and
#2) remember that I can’t control this disease BUT I won’t let it control me!

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