Who Am I?

By msthing

3 min read

I was 13. One morning I woke up "paralyzed". Actually it was extreme muscle spasm. I was told it was probable MS. That was 1978. I
never was the diamond in the set. I was more like the friend no one wanted. I don't say that like oh poor me. I was the one everyone loved to death but how do you be friends w/someone who couldn't do all the fun stuff? We were kids.

MRI

Fast forward 2009. I need to see a Dr. Wierd mojo stuff is going on. The new dr. call in a different dr. to consult within over my condition.

He immediately orders a cat scan. Nope doesn't show a thing (I assumed). Then off to the MRI. Hey wait a minute doesn't it take like 4/ever to get an appt. for those. Huh I'm getting a bit nervous. It's 6pm. I leave the hospital n go home not telling a soul what just happened. I was still digesting the fact I got a MRI.

Multiple sclerosis diagnosis

The next morning at about 7am the phone rings. It's the new dr. Can you come in immediately. OH CRAP!
The dr. looks a bit stressed.

He gently picks up my hand and says, sweetheart I'm going to be blunt. I'm just going to say it. No beating around the bush. I then say ummm sir you're beating around the bush. He gives a nervous chuckle n then looks at me w/tears in his eyes. Sweetheart you have multiple sclerosis.

There was a reason I was so "odd"

I just laugh n say oh ya I know. I was dx'ed as probable in 1978. So is there anything else. The poor man looks confused. Questions start to flow from him. Well slap me terrified, as the next hour he explains soooooo much. I fall to pieces. Not because I was dx'ed w/m.s. but why was I lied to for so many years. There was a reason I was so "odd".

Forgiveness of self n others was a hard pill to swallow. So there was reason I was always sick n a klutz.
I end up traveling a very unmaintained trail on a very steep mountain for the next 5 years. Everything that could go wrong did. Exponentially.

The hardest thing was watching my husband going through this hell with me

It was hardest watching my husband walk my hell w/me. I was in the hospital more than not for 3 yrs. Steroids caused me to gain approx. 70 pounds. My skin was ripping like paper n bleeding. You get it right? But this man didn't leave my side. They called us Ken n Barbie. He was still "Ken." I was ugly, confused, angry n scared. Only one of our kids accepted the new me at that time.
Everyone else was too ignorant or scared.

I heard everything from you don't look sick to I know a lady that works at the bank who has MS n she's fine. ARGHHHHH.

Ongoing challenges

FAST FORWARD TO 2020.

I'm alive n well. Still a bit confused about feelings towards my parents. And my family's reaction, But...
I'm walking n talking n cooking n can do so many other things as long as I pay attention to myself. I think that's an ongoing challenge. We had 4 kids n now 9 grandkids. As a parent/grandparent you want to spoil them w/your lil life specialties. But I just constantly have to tell myself do this, this n this n you will end up in bed for days or do this n this which is equally special n survive to play next week.

My children now understand MS

I am happy to report all children now understand that MS is not a made-up catch all phrase but an actual disease. My parents ignore their quilty feelings. I hold no malice. I just wish they would deal w/themselves n unburden their fears. We never were a close family but....

The emotional symptoms are the hardest

Dealing w/emotional crud is the hardest part for me. I lost most of the steroid weight n my skin took the brunt of that but still have a meh time knowing I'm not the same "Barbie" I used to be.

I'm blessed, I am heart strong I am loved.
Thank you everyone for being vulnerable and strong. It inspires courage.

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Janus Galante Moderator
And thank YOU Pepper for inspiring that very same courage in all those that read your story, your journey. There is a lesson in each paragraph. All the way from the way too young age of 13 to all of your children now understanding that m.s. is truly a very real disease. Yes, I think way too often some of the hardest symptoms to bear are the emotional ones. There is so much to have to endure with m.s., let alone all of the mental and "emotional crud," as you so aptly put it! I love where you said, "I'm blessed, I am heart strong, I am loved." So very, very important. Thank you Pepper.....xxxx's Janus
lindacolorado Member
Your story has hit a strong note with me. I experienced my first dysfunction at 17. I could not push my right arm through the water during a swim competition. I didn't go to the doctor, and just figured it was a pinched nerve. I did quit the swim team so as not to ruin my team's success that summer. But I did continue with cheerleading and didn't experience issues with that. There may have been some minor issues along the way, but nothing that registered. Then when I was 33, going through a divorce (an emotional, stressful time...aren't they all?), I experienced an especially weird event. I felt like my brain had been unplugged. I found myself driving without remembering where I was, what I was doing, or how I got there. I didn't recognize my surroundings, so I pulled into a gas station and asked where I was. The attendant started giving me cross streets, but I needed to know what town I was in. He responded with Denver. I lived in Colorado Springs and was a military wife, not that familiar with Denver. I then asked for directions to I-25, something I knew would take me back home. I followed the directions given to me, but felt extremely challenged to process the information. At the same time, I felt a level of anxiety I had never felt before, and a profound sense of exhaustion. What should have taken me an hour, ended up taking 2 hours. When home, I went straight to bed. The next morning, I woke up and felt normal again. About 6 weeks later, the same thing happened. Again, I was in Denver, but it was darker and I just didn't think I could drive home. I pulled into a Marriot and rented a room for the night. I didn't even pull the covers down, just laid on top of the bed and fell sound to sleep. I woke up about 5 am, and again, felt totally normal. I did my own research at the time, and everything pointed to MS. That was 1983, and so little was known about MS. There were no MS medications, and the advice given by neurologists included quitting my job. As a single mother, I had to work. I continued working as a stockbroker for 20 years, have never taken the DMTs or DMDs, found out early that I was allergic to steroids, and have learned to manage around my MS fairly effectively. I have gotten enormous help with my MS by joining an MS study with Dr. Raymond Damadian, the inventor of the MRI, and Dr. Scott Rosa, a cranial cervical expert. They feel MS, as well as other neurodegenerative diseases, are related to head or neck trauma. These doctors gave me back several lost abilities, some lost for as long as 25 years without medication. I still have MS, am still bothered by heat, but my quality of life has been so improved. I no longer get bladder infections, can see to drive again, can even speed read, and put my own earrings in. I have a wonderful husband who picks up the slack and makes me laugh.
f5hwo4 Member
I wasn't diagnosed until I was 55, it wasn't my parents who wasn't truthful with me it was my GP. I thought I had been having some MS symptoms for the last 20 years. I would ask him for a referral to a neurologist and he would tell me I didn't need one I didn't have MS. He knew I had MS and ALS in my family but that didn't change his opinion. My right arm started having crazy problems so he sent me to a neuro to see if I pinched a nerve in my elbow. As I headed out the door I turned to him and said maybe they will check me for MS. He said it doesn't matter if they do there is nothing they can do for it. I changed doctors the next day. The neuro I visited with said that after hearing about past symptoms and family history he was checking me for MS. The rest is history. Potter

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