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Discussion Starter · #1 ·
Hello everyone!

I am new to this site but not to lupus. I am a male and was diagnosed when I was 25. Needless to say it has been an interesting journey. I got married in May of 2003 and the day I got back from my honeymoon I was let go from my job. I had been seeing symptoms from lupus for a while but I didn't know it at the time. I just figured I was tired. I found another job after a few weeks of searching and a few weeks after I started I got my 1st blood clot. I got better from the clot then got another clot in a different leg. The fact I got a blood clot really threw the Doc's for a loop. When the trend continued they knew that something was wrong.

I started the long journey of visiting doctors then getting sent to another doctor then sent for testing. After several months of this cycle my rheumatologist diagnosed me with SLE, Raynaud's, Antiphospholipid syndrom. It took a while for the severity of my illness to really become a reality. I mean I had always been very athletic, played highschool and college football. How could I be sick? As the weeks turned to months I got more and more fatigued. At the time I was a sales manager for a car dealership in Atlanta. The hours I worked were horrendous. I would arrived at 7-8am and usually would leave after 9pm at night. No actual days off. It was probably the worst environment for someone with lupus.

I would spend most of my days in the sun during the summer and in the cold during winter months. This just seemed to multiply my condition. Eventually, I couldn't keep up anymore and my boss knew it. I was "moved positions" but in reality it was a huge downgrade. I decided that I was done with the car business (very good thing I got out when I did).

I spent the next few months desperatly searching for a job and fighting a flare up. I eventually found a job but it was sales related and I am a great salesperson. Problem is the lupus dictates WHEN i will be able to sell. I bounced around a few more jobs.

I finally found a good job! It wasn't in a sales capacity which help alot and the stress level was much lower. My lupus had started to not be a huge factor in my life. I still had my good and bad days but the good outweighed the bad. Fatigue was the biggest issue I had so my dr put me on a stimulant called Provigil. At first it helped alot and I was glad b/c honestly I was getting worried about driving. I had several times where I dozed off in the car while driving. The drug kept me awake and with minimal side effects i thought... The next week after starting the drug I because extremely ill. I wasn't able to get into my GP so i went to an immediate care clinic. I had a high fever, extreme fatigue, nausea then finally an excruciating headache. The clinic doctor diagnosed me with strep and sent me home with some antibiotics. two days later I went to work only to be sent home by my boss. She said that I looked horrible. Well I couldn't make it home... I drove halfway to my dad's house. My symptoms were getting worse the nausea was horrible. Finally I told him to please call 911 something was wrong... The ambulance took me to the local hospital where they were dumbfounded. They didn't know what was wrong with me all the could do was keep fluids in me and try to keep my fever below 104. I felt like I was going to die and the doctors agreed. They told my wife that the outcome didn't look favorable. Finally the decided that I had menegitis however they couldn't confirm it because I was on blood thinner which prevented them from doing a spinal tap. After a few days the blood thinner was out of my system and they did the tap. I did have menegitis and was given the appropriate drugs but i didn't improve. My wife spent every second in the hospital with me talking to doctors and searching for an answer. She found a trial where .001% of the patients given provigil developed aesptic menegitits. The drug was immediately stopped and my condition improved.

Over the next year my Lupus has gotten better but other aspects of the disease have gotten worse. I have interstial lung disease from the lupus which has made doing even the simplest tasks tough.

Hopefully the future will improve.
 

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Hello and welcome!

Wow, thanks for taking the time to write such a comprehensive introduction and an insight into how lupus has affected you.

I presume that the blood clots we due to APS and that you have lupus and APS?

It's certainly never easy to know how things may go from one day to the next with this disease and, as you say, some things can improve while others evolve differently.

Bye for now,
Katharine
 

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Hi Abrron.

Welcome to the lupus site.

Lupus has given you quite a few curves in your life.

Thankfully your wife researched about provigil!
Side effects of some drugs are scary.

Take care,
Lyn
 

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Hi and welcome to the site. You have certainly had an eventful time with your lupus. Your wife sounds very supportive, I am glad. It helps to have family arouund us. This site is also very supportive and full of useful info. Your experience with the provigil was useful.

I hope you are well at the moment.

Deb
 

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Discussion Starter · #5 ·
Thanks for the replys. My wife has been very supportive in fact I know I couldn't have made it this far without her support. It really makes me feel for those who aren't so lucky.

Thanks for the warm welcome.
 

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Hi there,

Great Introduction. I am glad you found the site, welcome.

Sorry about your diagnosis but I am sure you have found a place here to hang your hat. So much support, knowledge and compassion from the people here.

I have a sister living outside Atlanta, little town called Sugar Hill. Love Georgia and the people that reside there.

Hope to get to know you better. By the way, I take Provigil for fatigue and it is a god send for me.
 
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