- Sagen
- Sex: F
- Data Quality: 2 stars
- MS: 37 yrs
- Mentor
- Type: Progressive Relapsing
- Sensation: Moderate
- Overall: Moderate
- Cognition: moderate
- Vision: moderate
- Speech: mild
- Swallowing: moderate
- Upper limb: moderate
- Walking: moderate
- Sagen
- Female, 56 years
- Rolling Hills, United States
More About Sagen
I don't know if Mononuclousis can be a trigger for MS, but I had it when I was 16. My memories other then that started when I was a 21 year old, divorced mother of one. I had an area on my front right thigh become numb, and stayed numb for about 3 months. The doctor I saw gave me a B12 shot, and it seemed to help. Another episode was around 1983, when my second child was 3 years old. For nearly a week I had trouble talking, and was slurring my words. There were possibly other episodes after that, but I don't remember. If only I had known how important recording these symptoms would be one day, I would have kept better records. Who wants to think they are getting sick though?
As I got into my 30s I remember becoming more fatigue. I started having bouts with hot flashes, and night sweats, and basically, just not feeling well. I was on my third marriage to my present husband Steve. He is such a wonderful compassionate man. I brought my 2 kids to this relationship, and he readily accepted them. He didn't have any kids at that time. so I started over. When I got pregnant it was ectopic, and at 8 weeks along it burst and wiped out my left tube and ovary. I was in so much pain and lost a lot of blood, causing me to become anemic. So I was put on a high doseage of iron for quite some time. All I wanted to do was sleep, and was unable to stay up for long before needing to go back to bed. Fortunately, in my late 30's we still managed to have 2 more babies.Eventually, in my late 30s the hot flashes, and night sweats were more frequent, and more of the not feeling well. Then we took in our great nephew who was 5, and had multiple disabilities. That was when the stress really came on. We had so much going on that I wasn' take caring for myself very well. I tried to deny that I was falling a part, and didn't want to admit that I might be getting sick. I had kids to raise! I figured it was menopause symptoms coming on hard and strong. Now I have to wonder if my pregnancies helped to delay my symptoms from getting worse faster then they did.
Finally in Aug 2003, I was misdiagnosed with Lupus, and put on a low dose of Predisone for 4 years. About every 2 years, I had a flare up, and many of my symptoms were looking more like MS. Still my Rhuemitologist insisted it was Lupus. In 2006, I was tired of getting worse, so I took my health into my own hands by going to a Neurologist, where I was more thoroughly tested. My tests showed no connective tissue disease, which is what Lupus is. Though there were slight indicators of MS, but I wasn't ready to persue that. I trusted my other doctor, who was so stuck on Lupus. In the back of my mind the possibility I really had MS, especially since I have a sister with MS and had an Uncle with it too. As I look at the symptoms of the MS it's pretty clear now. In Sept.2008, more MS like symptoms were showing up, so I returned to my neurologist. Atlast I was ready to accept that it was MS. Mentally it was a hard switch from the Lupus which I had researched so much, plus I was recovering from a complete knee replacement that I had in Sept.2008. Knowing I had MS instead was so disheartening, yet a relief from the years of confusion. My MS symptoms seem to worsen during PMS and my period, and the incontenance and urgency are magnified during that tiime too. I had my primary doc retest me for Lupus and again it was still negative. I could have had both MS and Lupus, but Lupus is not showing up. For that I am grateful. While I thought I had Lupus we were in the midst of doing foster care, and decided to adopt again. After that we quit foster care, knowing I was getting sicker, and that we wouldn't stop taking kids if we didn't get out of fostering. The Lord has always carried me through the rough times.
March18,09 I went back to the neurologist. I have been on Copaxone for a month. I hate how it burns,but switching from alcohol wipes to baby wipes seems to easy some of the sting. Injecting into my hip is not easy for me, and it hurts worse there, so I haven't been using that area. My Neurologist upped my anti-depression meds.He also recommended seeing a urologist about the incontenance and in ability to orgasm.
Update 04/02/09 started using a nueromuscular electronic stimulation device or neuroprothesis. I have a sleeve with electrodes and one for my leg that has foot drop.
Update 07/24/2010 I have lost more of my strength on my right. I cannot do many things with that hand. I cannot open the pockets on my electrode sleeves to put the transmission gel in. I don't use them anymore. I am using a night splint to keep my hand straight at night, because it tends to want to curl some. I have spasims on the right side that cause the hand to curl shut hard or stretch out straight, and it takes a few seconds to relax again. I cannot walk during a spasim either. I use a cane a lot more. For shopping and distances I use an electric cart, power chair or have someone push me in a wheelchair. I use a walkaide that has Bluetooth Technology. It has helped me walk a little faster, and with balance.
There's been no improvement in my with my orgasims, and my incontenance gets worse at times. Before my period, during and a while after. It is frustrating when I am not able to do certain things I once did, I struggle with dressing. Now I wear easy care slip on dresses.Not sure how I will do that in the winter. Sometimes it is depressing, but I try to always lean on the Lord. I have family to help me too, and my wonderful husband.