I choose to be happy although I do have MS
I was always a bit unsteady on my feet since adulthood. In 1997 my first optic neuritis when I lost sight in the left eye. I wore an eyepatch until it resolved with no mention of MS from the eye dr., just a mystery. There came a time when my feet were going all numb and tingly. Then they felt like blocks of wood or soap. Hot felt cold and cold hot in the shower. The feet hurt as well. Tingly fingers came on my left hand. I would try to wake my feet up. One time in a hotel I was rubbing my feet against the sheet while in bed to try to stop the feelings there.
Some time later I began to itch so badly i would rip my skin scratching. I went to dermatologists who found nothing even though I described feeling something jumping on my face. Finally my partner found the scabies mite with a loupe. This was after a year of itching so bad with no help. I don’t think the stress of all this was good for my yet undiagnosed MS.
Then came a trip to Jamaica when a friend treated us. It was so hot and I was soooo sluggish and my feet hurt so much I had to lag behind everyone as I tried to parambulate through the pain and fatigue. Something was very wrong but I didn’t know what. I felt terrible.
I began to feel very tired and unmotivated at work.
Then all i could do was lie on the floor I was so weak. I had had very dark thoughts. I began receiving treatments at an alternative clinic, paying with credit cards as I had no insurance. $15,000 in debt later there was no reason for the way I felt although I did find that I was hypothyroid. I had been prescribed a ‘cleanse’ which included taking hot saunas. I would feel so weak and awful I would have to stop when it got too bad. Little did I know that it was the typical heat sensitivity of an individual with MS, and very serious for me. Mental confusion was at it’s peak in the heat as well.
My relationship began to suffer and become stressful also.
I could not concentrate, help around the house, and she understandably became frustrated with everything. Eventually she couldn’t take it anymore as we drifted apart. Fortunately we are still great friends but I am apparently single and that is strange too.
I used to be a hottie but I may have become a nottie. This all went on for years. Then I lost hearing in one ear. Everything sounded like a kazoo. I had had sudden sensorneural hearing loss. I am a musician and an instrument tuner. This MS is so devious. My ears and my hands are necessary for my work. My eyes seemed to be getting worse as well. Idiopathic means there is no perceived cause. Loud noises hurt but I was having trouble hearing. When the other ear went and I was told again that there is nothing wrong with my ear but with the connection between my ear and brain along the 8th cranial nerve after numerous tests again. I was told that I had “burned out MS” which was of indeterminate age.
My work began to suffer worse. Now people from Jakarta to Eastern Europe and more are waiting as I try to catch up with little energy or motivation. All the while I was suffering from MS and not knowing. This all went on for well over a decade.
So much happened as MS aimed it’s stupid curse all over the parts of me that mean the most. I wouldn’t mind seeing if my stuff still works or at least have a friend to hold hug, laugh,and snuggle. Is this another thing that MS has taken?
Driving to town one day I saw what appeared to be 2 cars coming toward me-one in each lane of this village way. It seemed as if one was going to be in a crash with me!! Luckily i could pull over, but when I did I realized that I had double vision. I made it home hoping it would go away. I went to the emergency room.
I had had an appointment for a ‘lumbar puncture’ scheduled for a couple of weeks away so when they offered to do it then I decided to wait for the guy I heard was real good because of my fear of the procedure done in the ER. I got a call that my spinal tap appointment had been cancelled due to a change in the doctor’s schedule, which didn’t seem like a whole lotta reason to me, but so be it. I was very anxious to resolve my double vision which was totally disabling. They tested my vision and more and let me go from the ER with an eyepatch, which I wore for months replacing it several times. On the day of the rescheduled appointment came the worst ice storm I had ever seen. Although we both had 4-wheel drive vehicles that were not running well enough my friend agreed to take me in his wife’s car with the best tires. It took 3 hours to go 50 miles to the hospital. The puncture was not as bad as I had feared so I happily left for home with a ‘woohoo’. We then drove another 3 hours home in the storm again stopping to clear the windshield and wipers many times. I didn’t feel too bad and thought my friend deserved a cocktail for his huge favor. I could barely walk and always used a cane, california crutch, or someone had to help me. Someone saw how pitiful we looked and bought us a drink, big fishbowls of Remy Martin. That felt good and out into the storm to go home. Then we got to the intersection to go up the hill we got stuck and could not make it up the hill. Some angel in a monster truck behind us drove me home. As I left the hospital they had told me to take it easy and let someone else help me tonight. What they didn’t tell me was that long ago they would place sandbags against the patient’s head so there would be no movement to avoid the legendary headache which appeared the next day. I woke up feeling ok but by noon I had the most excruciating headache I could have ever imagined. This went on for a week and by the third day I called the Hospital and was told they could ‘patch it’ by going in again and injecting some of my blood into the CSF so it would clot. Man my head hurt but I stayed home.
Then my appointment with the MS neuro was postponed so I went when it was rescheduled. I said first thing that nobody had told me I had MS. He then said rather matter-of-factly -“you have MS’. I was given a month to start the shots. I asked if there was anything they could do about my double vision. He said that if it had been less than 2 weeks they would prescribed steroids but it had been too long, so no. These were the people that kept postponing my appointments precluding any treatment for my eyes!! I got nothing until my next relapse they declared, although I believe there were more. The burning, tingling, pulling feeling was bad enough for their rules and I was given 3 days of IV methlprednisone. After a week or so that feeling bbegan to subside but the double vision continued. One day I woke up and for a minute the vision was better but then came back. The next day 2 minutes, until it finally got better in a month or two.
Now I have been diagnosed about 3 years and ill for 15 or so. Now I pray for all the folks with MS, and any other disabling condition as well as myself. Life is still good and I choose to be HAPPY!!