Rheumie Thinks Lupus But I Think MS - Multiple Sclerosis Message Board

Blessed4Life · 08-22-2007, 08:10 AM

I have been dealing with "strange" occurances in my body for about 4 years now. My Rheumie thought Lupus about 3 years ago because my symptoms and family history but then said no after some testing. Because of neurological symptoms, I was seeing a neuro who dismissed everything I said for about a year and half. Because of joint symptoms, I went back the rheumie. He is now thinking Lupus again and warned me that he "has plenty of Lupus meds to treat me." I go back to see him in October.

Anyway, over the past few weeks my muscle twitching spasming and weakness as well as numbness has been hyped up. There is not a day that I do not have the spasms. They are more frequent and "bigger" (stronger) then ever before. They occur everywhere from my face to my neck to my arms, legs, stomach, chest, behind, feet, ankles, toes, and fingers. I have laid across the bed with my feet hangin over and the muscles in my ankles caused my feet to jerk back and forth. It feels like water is cascading down my legs and there are bubbles as they water passes by my knees.

I also cannot stop using the wrong words. My children find it so funny but I find it so frustrating. I do it so often than now it is a family joke and I am the butt of it. I know they don't mean any harm so I don't get angry with them but I feel like my brain is slipping. I could go on but you get the picture.

Here is my dilema. As I mentioned, the neuro thought..."crazy" and dismissed everything. And my rheumie thinks Lupus. I want to get another brain MRI but I don't know if I can take hearing that there is nothing wrong when my body is telling me otherwise.

Also, has anyone had a sleep study. My rheumie requested it because I have trouble sleeping at times. Since I have twitching and spasms at night, do you think the sleep study picked that up.

Blessed...despite what happens.

Bearygood · 08-22-2007, 08:22 AM

Have a friend who had a sleep study because of apnea. I would think that it would pick up the twitching but I don't know what they're looking for.

If I were you I'd start by seeing another neuro -- these are fairly broad symptoms you're having. However, I will mention that there have certainly been cases of people originally mis-dxed with Lupus who were later found to have MS. One of these cases was just portrayed in an episode of "Mystery Diagnosis" -- I don't know offhand when it's going to be re-run but if you're interested, let me know and I will come back and post.

Good luck to you!

Blessed4Life · 08-22-2007, 09:03 AM

Bearygood,

Thanks for responding. I would definitely like to know when the program runs again. I am dealing with a fatigue episode right now since yesterday. I pushed myself through my day yesterday but today I can't seem to get started. Everytime I get up, I find myself back in my bed. My computer is within arms left of the bed so I get up to it every so often to check my work email. I am so very frustrated. I feel so alone. It is like how do you get someone to understand what you are experiencing when they cannot see it. One night my husband said he was awakened by my "vibrating". So he knows that something is wrong but with symptoms coming and going and good days and bad days, I am sure he is questioning just how serious this could be. I want to see another neuro but everytime I ask my primary doc for referral, I end up back at the same neuro's office. My prayer is that the sleep study shows something so that it is no longer a "take my word for it" experience when I see another neuro. I'll ask for another referral.

Michelle

Bearygood · 08-22-2007, 09:51 AM

Michelle, I have personally never "vibrated" but there are sure a lot of people with MS who have.

Just looked -- the next airing will be on Discovery Health on 8/26 at 6:00 PM. It may be repeated on TLC and another channel but this date/time I know for sure. If you want to research the episode, the segment is described as "After Quettia Davis steps on a crochet hook strange things begin to happen to her body".

Hope this helps!

Blessed4Life · 08-22-2007, 02:07 PM

Bearygood,

Thank you. I will put it on my calendar so I don't forget. My memory is the worst. From forgetting names to forgetting events. My husband and I got into huge argument because I told him he didn't do anything special for my birthday (June). How could I forget that we spent the entire day in NY City and we saw The Lion King on Broadway. Now that is a bad memory.

Thanks again,
Michelle