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Old 08-10-2007, 06:55 PM   #1
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Scary "Episodes" - Anyone else experience this?

I hope someone here can help me. I have been going through the diagnosis process for a long time and recently took a turn for the worse with my existing symptoms, some new ones and now two new odd "episodes".

Ten days ago I was walking from my car into a lab building for more tests (less than a 2 minute walk) and about 10 minutes after I got inside and sat down, my head started to shake and then it went into my upper body/arms, but not to the point where others around me noticed.

Five days later I was sitting on the edge of my friend's pool and dangling my feet/legs in the water. I was in the sun but didn't feel overheated or hot and the same thing happened. My head started to shake, so I got up and sat in the shade. Then the shaking progressed to my upper body and arms and worsened to the point of an uncontrollable violent shaking/jerking.

Needless to say, this scared me and my friend both, as she ran to get me a bottle of water and saw that I had trouble holding it steady enough to get it to my mouth to take a drink (from the jerking in my arms). This lasted for about 20 minutes, then went away for about 10 minutes and then came back again. It was kind of in waves as it progressed, peaked and then slowed and died out and then back again.

Has anyone ever experienced anything like this? I see my Neuro on Monday, but have been troubled by what this is, what brought it on and if I should just stay in this weekend even if I start to feel better from my other ongoing symptoms.

My Neuro seems to feel I may have an autoimmune disease causing my other symptoms, since I also have Hashimoto's (which is pretty much under control), but I still don't know if it is Lupus, though many of my other symptoms seem to line up.

It would be comforting to know if anyone has had any kind of similar experience and what may have caused it. Please help!

Annie

 
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Old 08-10-2007, 09:10 PM   #2
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Re: Scary "Episodes" - Anyone else experience this?

Quote:
Originally Posted by Deedle77 View Post
I hope someone here can help me. I have been going through the diagnosis process for a long time and recently took a turn for the worse with my existing symptoms, some new ones and now two new odd "episodes".

Ten days ago I was walking from my car into a lab building for more tests (less than a 2 minute walk) and about 10 minutes after I got inside and sat down, my head started to shake and then it went into my upper body/arms, but not to the point where others around me noticed.

Five days later I was sitting on the edge of my friend's pool and dangling my feet/legs in the water. I was in the sun but didn't feel overheated or hot and the same thing happened. My head started to shake, so I got up and sat in the shade. Then the shaking progressed to my upper body and arms and worsened to the point of an uncontrollable violent shaking/jerking.

Needless to say, this scared me and my friend both, as she ran to get me a bottle of water and saw that I had trouble holding it steady enough to get it to my mouth to take a drink (from the jerking in my arms). This lasted for about 20 minutes, then went away for about 10 minutes and then came back again. It was kind of in waves as it progressed, peaked and then slowed and died out and then back again.

Has anyone ever experienced anything like this? I see my Neuro on Monday, but have been troubled by what this is, what brought it on and if I should just stay in this weekend even if I start to feel better from my other ongoing symptoms.

My Neuro seems to feel I may have an autoimmune disease causing my other symptoms, since I also have Hashimoto's (which is pretty much under control), but I still don't know if it is Lupus, though many of my other symptoms seem to line up.

It would be comforting to know if anyone has had any kind of similar experience and what may have caused it. Please help!

Annie
WOW Annie,

I have never personally experienced anything like what you are describing but I can understand completely your concern. Do you have Lupus? I noticed you had this post on the MS boards as well so I was just wondering what your diagnosis is. I know both groups of us can experience some very strange things but is the first time I have heard of anything like this.....not to say it has never happened to anyone else. I hope you can get answers on Monday when you see your Neuro and please let us all know what he has to say about it....you have certainly peeked my interest. In the meantime, I hope you are feeling much better. I think I would probably stay out of the sun as much as possible if I were you, just to be on the safe side.

Connie

 
Old 08-11-2007, 06:20 AM   #3
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Re: Scary "Episodes" - Anyone else experience this?

Hi Deedle, I have not experienced any violent shaking or jerking, but I HAVE experienced what seems similar to the shaking in your upper body & arms! Every once in a while I get this feeling like my upper body's insides are shaking. I can only describe it like a motor running inside or like tremors in the inside. Does this sound anything like yours? Or do you think you might be having full fledged seizures?

I know it's not my heart because when it happens, I feel my pulse and it seems normal and I can differentiate my pulse from the shaking. Sometimes it lasts several minutes, but probably never more than 5 for me. I did notice I get mine at night alot, sometimes it wakes me up. THough I have gotten it during the day a few times. I can't seem to correlate it with anything, though. Sometimes it comes in waves and I get it several days in a row, other times it can be months in between.

 
Old 08-11-2007, 07:59 AM   #4
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Re: Scary "Episodes" - Anyone else experience this?

Hi Connie and BayBreeze,

Thank you for taking the time to reply. Everyone's experience is helpful and I guess these boards is what that is all about. Maybe we can somehow help each other in this mish-mash.

BayBreeze: My shaking/jerking was violent, so not like it was inside. It was very noticeable to my friend and it in fact scared her because it was so abnormal.

Connie: I have not been diagnosed yet. I've been going through the frustrating process on and off for years and yet I have gone significantly downhill in the last year, especially the last 2 months where I feel even to weak to drive. My Neuro wants to rule out MS and Lupus, along with some other autoimmune disorders, but hasn't been able to yet. Although I have new lesions since the last MRI, he has taken several panels for autoimmune diseases, but I won't find the results out until Monday. Oh, and my ANA came out negative in June.

I don't have any skin problems. Can being in the sun still cause problems if you have SLE and no skin issues? Also, how does my abnormal MRI fit in with Lupus? My new MRI shows I have new additional lesions since 2005, yet the Neuro considers them "inactive". All of this is very confusing to me.

Any input and help is very much appreciated!

Annie

 
Old 08-11-2007, 08:15 AM   #5
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Re: Scary "Episodes" - Anyone else experience this?

Just a thought...make sure you have your heart checked as well to make sure it's not the cause of your seizures. I just saw a medical program on TV about a young woman who's had seizures all her life and they were suddenly gettting worse. She had been diagnosed w/ a seizure disorder and was taking meds for it, but they kept happening anyway. She was in the ER and a doc there finally noticed that her heart went erratic FIRST, which in turn caused the seizure. Turned out she had an electrical problem with her heart that caused it all and she had a device implanted that could regulate the electrical activity and suddenly she was fine and had no more seizures. I know this is far fetched and it's rare, but it's still worth checking into if they cant find any other reasons.

 
Old 08-11-2007, 03:54 PM   #6
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Re: Scary "Episodes" - Anyone else experience this?

Annie,
I have SLE and have also had the trembling spells but nothing like you are describing. It does sound like focal seizures to me and I have also had them but not with my head. Mention these to your Neurologist for sure. As far as the lesions of the brain, they can occur with Lupus and MS and a Neurologist will be able to tell the difference. In terms of your negative ANA, it could still be SLE and of course it doesn't rule out MS. I am not a doctor but I do know how worrying your symptoms can be when you have no idea what is wrong. Try to stay positive and eventually you will get some kind of a diagnosis, and it may shock you as to what it is. When I first went to the Neurologist it was at the urging of my Orthopedic doctor. I had fallen and hurt my back and some 5 months later I started having lots of numbness and tingling in my feet and legs and we all blamed these things on my injury but after all kinds of testing and 1 year later, i was diagnosed with Lupus and believe me, that was the LAST thing I expected. I hope you won't have to wait that long to find out what is ailing you but if it is Lupus OR MS, just remember that most people with either one of these diseases has a mild form of it and only a small percentage have it so serious that it leaves you totally incapacitated. Yes, when we flare it can be a difficult time, but usually flares eventually go into remission and your life isn't so bad. I have Fibromyalgia along with the Lupus and it does tend to make it a little more harder to deal with but I don't let it control my life....only in the summer!!!!
God Bless you and I am praying for you to get your answers soon.

Connie

 
Old 08-11-2007, 05:08 PM   #7
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Re: Scary "Episodes" - Anyone else experience this?

Hi Baybreeze,

Thank you for your reply and information. I did in fact have an echocardiagram last month because my neuro wanted to see if my tricuspid and mitral regurgitation had progressed. He didn't seem concerned with the results at all and said the test came out "pretty good", so I've dismissed that. This continues to be a daily frustration. I haven't been able to work or do any of the physical activities that I love. Now I have financial worries because I don't have a diagnosis yet, so how can I even get disability or get on the right medicine to feel better? I feel like I have no quality of life and although I try to keep my spirits up, it's pretty hard no to feel discouraged. If the neuro still doesn't have any answers on Monday when I see him and then tells me again to come back in 2 weeks, I feel like I will probably just break down and start crying.

Thank you for your help and I wish you luck and many, many good days!

Annie

 
Old 08-11-2007, 05:13 PM   #8
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Deedle77 HB User
Re: Scary "Episodes" - Anyone else experience this?

Thank you Connie. I have no skin issues at all, so if it's Lupus, it would definitely be SLE. The brain lesions on my last 2 MRIs confused me, but I just read that people with Lupus as well as MS can have lesions? Do you know if this is very common?

Annie

 
Old 08-12-2007, 03:08 PM   #9
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Re: Scary "Episodes" - Anyone else experience this?

I have lesions, and lupus. Mine took a long time to show because they were so small at first. I was symptomatic long before. I had bilateral optic neuritis and what they called transverse myelitis but it did get better after several rounds of iv steroids and 6 months of IVIG treatments. At first they labeled it as probable ms but later after my blood work and lp they started leaning toward lupus and then almost two years later actually firmly diagnosed it when my ANA did show positive. It was negative for a long time prior it was just other antibodies that were positive. The first being anti Ro SSA which is what sent them on the track of lupus instead of MS.

I have had the vibrations many times but mine is usually below the waist. The prior description was very acurate...like a motor running. I actually would reach down to feel the chair or floor to see if it was vibrating I would feel them so strongly. I have had tremors many times too but never violent shaking which really sounds more like a seizure than anything else.

Hopefully your neuro can get to the bottom of it. Make sure you have an LP done...they do ..well...suck is the only word but they provide a wealth of information. The medication used for ms and lupus are not the same and you want to make sure you get the right meds. My CNS problems have improved if that is any consolation to you. While I do still have symptoms, nothing like before. I can walk now although I have difficulty with one of my legs and I have recovered my vision in my right eye and some in my left (I was legally blind in my left eye at first) It has NOT progressed and that is the important thing.

Also make sure everything is copied between your neuro and rheumi. I also learned to get copies of your MRI's. You can ask for the films, the people will have their records on disc. If you need a second opinion from another neuro he will want them. I stored mine between my matress to keep them from getting ruined.

I hope you get answers soon.

Erin
Dallas TX
Burning up in over 100 degrees!!

 
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