This is my story:

On July 5, 1992, I went to work feeling great. At 3 a.m. it felt as though someone had placed a fire-hot poker in my right leg and was yanking it up and down. The pain was so intense that sweat was pouring off my body. By the grace of God and with a portable air conditioner blowing on my face I made it through the last few hours of my shift...actually with someone calling in sick for the next shift, I was able to stay by the air conditioner while looking for a replacement. Driving a standard transmission car for the 45-minute drive home was a nightmare. I made it in the door and actually was rolling around from the intense pain. My husband called my family Dr. at his home and asked if he could bring me in right when the office opened. Otherwise, he was going to take me to the emergency room.

My Dr. thought it was caused by a "back" condition. He gave me a prescription for a pain medicine and sent me home. As the day progressed my leg went numb. I was then instructed to stay in bed and a CAT scan of my lumbar back was ordered. The CAT scan was "negative." He told me to stay in bed for a week...during that time feeling started to return and an intense burning sensation developed. Since I was no longer in severe pain, I was released to return to work. A referral to a neurologist (neuro) was also arranged; of course it was several weeks from that time. The neuro came to the conclusion that I was "just depressed." Who wouldn't be? It was horrible trying to maintain my normal lifestyle as a wife, mother of a young child, gardener, and a full-time registered nurse. I was the house supervisor of a small community hospital and in charge of the facility when I was on duty. I was on the "run" constantly and working 12-hour shifts. Additionally, I had a 45-minute drive each way.

I decided to go to a chiropractor I had used before. He told me he was concerned and thought my problems were "higher up." He thought I either had a brain tumor or MS. That scared me enough that I called the Mayo Clinic and received an appointment for Sept. 2, 1992. After examining me and discussing my history, the neuro thought I quite possibly had MS. Tests were done. My MRI was peppered with lesions and one was fairly large. I also had the oligoclonal banding in my spinal fluid. I was sent home with the diagnosis of MS and a "watch and see" attitude.

My history included:

• 1985 carpal surgery both hands
• 1985 herniated cervical disc after the above surgery
• ???? diagnosed with fibromyalgia
• 1989 weird sensation on the right side of my face--severe itching that when touched felt like needles and pins
• ???? Started having this weird sensation go through my body at times when I bent my head (Now I know it is called Lhermitte's sign.)
• 1992 Attack as mentioned above

I won’t bore you with anymore history…except to say that I have lost count of how many stress fractures I have had.

Since all of the neuros in this city are in the same group, I decided to go to a large medical center approx. 120 miles from here. They were firm believers in putting all of their MS patients on a maintenance dose of steroids. In less than a year I started having vision problems. As time went along I became more and more fatigued. I started having repeated stress fractures in my feet. My right foot was numb and ached. My right lower leg continued with the burning. Now I have numbness in both of my feet and my right foot feels like it is freezing most of the time. I can't stand to have even the air on my right leg, as it increases the aching and burning...and the sensation has now gone clear up my right leg and buttock. Both sitting and walking are quite a challenge. The intense sweating in my face and scalp have never stopped. I get these stabbing pains out of the clear blue in my body. The thing in my face comes and goes...at times it's like a nasty toothache. I get spasms in my legs. At times they are so severe that my legs jerk over a foot or more off the bed. I continue to have vision problems, which has made me give up some of my favorite crafts. I also have some cognitive problems. In 2001 I had to admit I could no longer function on the job.

The Dr. from the medical center left to start his own practice and I followed him. That was a huge mistake. It came to the point that he just didn't even want to hear about my pain, because I was "just depressed." I wanted off the steroids due to the fractures and weight gain. I went to a pain specialist (and continue to go), and he tries to keep my pain at a tolerable level. While applying for SS disability, I happened upon some notes the neuro had written. One month he stated that I needed to get off all of my pain medications and antidepressants. The very next month he claimed my basic problem was "depression" and even removed my MS diagnosis. It just so happened that the psychiatrist that I was seeing for my depression expressed some concern about the neuro. He said this neuro was one of his teachers in med school, and he wondered if he was going senile after reviewing what he had written about me.

I fired the neuro and found another one about 30 miles from home. He ordered an MRI, etc. The MRI still showed the lesions, and I nearly died from the dye/contrast used for the MRI, combined with gross negligence on the part of the radiology technician. The new neuro placed me on Avonex. Unfortunately this newly found neuro decided to leave the facility he was at and joined the other neuros in my city. Instead of him teaching them his good bedside manners, he adopted their "get ‘em in, get ‘em out" approach. So, once again I am looking for another neuro!

NOTE: Don’t be afraid to ask questions at the radiology center. Part way through the scan the tech came in and administered the contrast and left the room. I commented as he was giving me the contrast that I had never felt this cold feeling going through my body before when I received the contrast. Suddenly it was like this elephant sat on my chest, and I was having difficulty breathing. I started to yell "HELP" at the top of my voice. No one responded. Then I knew I was going to vomit and there I was with my head strapped down and inside the MRI tube. I said my prayers and made peace with God, knowing I was going to die. Then a little voice told me to radically move my legs. When I did that it caught the technician’s attention and he spoke through the speaker telling me to stop moving. I was able to yell for his help. HE HAD TURNED THE SOUND OFF FROM THE MRI PATIENT ROOM TO HIS CONTROL ROOM! After I spewed vomitus everywhere, he put me back into the MRI tube to finish the scan. At the end of the scan, he told me I was free to leave. I told him I didn’t think I could drive at that point in time and could I please lay down somewhere. They took me to some "holding" area, where I promptly deteriorated. My husband said it took them five hours to stabilize me in the emergency room. The ER Dr. told me to never get that contrast again if I wanted to live. The name of the contrast was ProHance.

My current medication regime is as follows:

Ambien 10 mg. at bedtime (for sleep)
Ativan 1 mg. daily (for anxiety)
Avonex weekly injection (for MS)
Bextra 20 mg. two times a day (for osteoarthritis)
Celexa 40 mg. daily (for depression)
Oxycontin 80 mg. two times a day (for pain)
Provigil 200 mg. two times a day (for fatigue and cognitive function)
Senna-S 3-4 tablets twice a day (for constipation from the pain medicine)
Trazodone 150 mg. at bedtime (for depression and to help with sleeping)
Tricor 160 mg. daily (for high cholesterol)
Vicodin ES 1-2 tablets by mouth three times a day (as needed for pain)

As mentioned before, I am now on disability. The fatigue keeps me from doing very much, compared to what I used to do. I used to work a full-time and sometimes another part-time job; care for my two kids (daughter and husband!); do all the housekeeping, laundry and gardening; preserve food for the winter; be active in our daughter’s school functions; spend hours every night helping our daughter with homework as she has learning disabilities; be responsible for all the paperwork (paying bills, filing things, balancing checkbook, etc.); be active in our church; and relax by doing crafts. Now I am lucky if I even get an evening meal prepared on some days. It’s been quite a drastic change and adjustment. The most discouraging thing is that I often cannot make it to church because I cannot sit or stand long enough for the message…but we are working on that. The church just added on a small addition, which includes a larger nursery. Both the new and old nurseries now have a sound system, so the sermon, etc. can be heard in those rooms. We are thinking about placing a recliner in one of the nurseries. That way I could go every time the church family meets.

I find it very frustrating that I can no longer go outside whenever I want and enjoy the wonderful world God gave us. In the summer the heat is limiting, but I cope with that by getting wet in the pool. Then I can work outside for short periods of time. In the winter, the cold really affects the pain in my leg and the osteoarthritis. Yesterday it snowed and more is expected today. It is absolutely gorgeous outside as the sun reflects off the snow. I am content just watching the birds, squirrels, etc. from my kitchen window as I cook pots of different kinds of soup to freeze. I sometimes also cook up larger batches of casseroles and freeze them also. I freeze things in family portions and individual portions. I have found that this is a really good way to cope with the fatigue. On good days I can cook ahead, and on not-so-good days I can just serve something from the freezer. It is also an economical way to do things. If anyone wants some recipes, please let me know by requesting them at our Yahoo MS site at: http://groups.yahoo.com/group/multiple-sclerosis

I have found a good way to help with the coldness and heat is to make up rice bags.

I keep one in the freezer and one at room temperature so I can warm it in the microwave. These rice bags hold their temperature for quite a while. I also use the gel packs, but prefer the rice bags. Also, medical supply stores carry these chemical cold packs that you activate by squeezing them so the liquid mixes with the chemicals. I always carry some of those with me.

In fact I have made up my "MS Bag" that goes with me to church, meetings, etc.
I keep the following in it:

A warm pair of socks
My special slippers/shoes from a ski store
A gel pack that I could put into a microwave
Chemical cold packs (Also work well to cool down my head when I am sweating.)
Ace bandage to hold packs in place on a leg, etc.
Material I might need for that meeting, so I have a free hand

As far as assistive devices, I have a cane, a walker with a seat, and a scooter. The situation and/or weather dictate which I use. Also, I am well known for grabbing a shopping cart that has been left outside and use it like a walker while I shop.

Instead of focusing on what I used to do, I am trying to focus on what I can still do and what adaptations I can make so I can do more things. I have found that if I can somehow maintain a positive attitude that I feel, and do, much better.

Thank you for reading my story.

Rinda