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Old 08-15-2007, 09:49 PM   #1
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Head and body tremors with lupus?

I am new to this site and it looks wonderful. There are a lot of caring people out there. I just wanted to ask a few questions.

I have been looking over the symptoms list and I have quite a few of them. One of them that I don't see is more neurological I think anyway. I have head and body tremors. I have had them for almost a year now. I also have the severe BRAIN FOG alot lately. I have had heart palpitaions, my right shoulder and hip ache almost every night. I have headaches almost daily. I have what seems to be blood sugar problems, but my blood sugar checks fine. I go off and on with swelling all over my body. Unlike most of the symptom lists that I have checked, I have gained a large amount of weight, not lost it. I have vision problems. It seems to change quite often. One week I can wear my glasses, the next I cannot. I babble at odd times... as you can see.... I can't get my thought to come out of my mouth correctly. It is like the connection between my brain and my mouth is broken. I repeat things constantly. Most of all....I never know when I am going to have one of those days were I cannot get out of bed becasue I just can't seem to wake up. I will be fine one day and the next there is not getting out of bed. When I go out side when it is hot it just zaps me and I can't do anything. If I sweat my face turns red and burns...it feels as though my sweat were made of acid.... there is more, but I am quiting....

I have not been diagnosed yet... except for the ones that tell me it is all in my head or that I am doing this to get disability... they actually sent that in to disability so I got denied... I really want to be sick and shake all the time....yeah right...during my bad times I can't walk without forearm crutches to help me... and I constatly run into things like I am drunk...

Can someone answer any of this....I had the blood tests yesterday, but I am still waiting for the results.... I just don't see the conection with the tremors...Do you?

I am so tired of basically being told that I am crazy!!!

Last edited by ksandra97; 08-15-2007 at 10:08 PM.

 
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Old 08-16-2007, 04:39 AM   #2
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Re: Head and body tremors with lupus?

Hi & welcome! I trembled some & had a lot of neuro-like darting/dancing tingling sensations. Mine may have been due to borderline anemia, which resolved pretty quickly once I started on an anti-malarial.

When do your tests come back? (You should request copies for your own files.) When is your follow-up appt?

I hope your drs. have run all the tests for lupus & for antiphospholipid syndrome (see the "sticky posts" = permanent informational posts at the top of the Board). And considered thyroid, too. And also flat-out neurological conditions...

Of course, I'm just a patient, so these are just some things that come to my totally *untrained* mind... I hope others chip in more. But, meanwhile, I send you my best wishes. Bye for now, Vee

 
Old 08-16-2007, 04:38 PM   #3
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Re: Head and body tremors with lupus?

Thank you for your response. I have read the stickys and that could be an option. In answer to your question...I am suppose to get my results back tomorrow. I also do already have hypothyroidism. I have already seen about 5 neuros and all but one of them says basically that it is all in my head. There is not anything that shows up on my mri. The one that wanted to help me has refered me to Washington University. I am still waiting on an appointment becasue of an insurance screw up.

 
Old 08-16-2007, 04:40 PM   #4
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Re: Head and body tremors with lupus?

oh, by the way... what would cause an elevated ALT level. My tests for Hep A, B, & C were negative.

 
Old 08-17-2007, 08:41 PM   #5
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Re: Head and body tremors with lupus?

I got my test results today and I don't know weither to be happy or sad...

I don't know what they mean because I think that I got a copy of them before the doctor did. Can anyone help???

Here they are:

Sed Rate - 15
QCRP - 0.860 H
ANA - Negative
Rheumatoid Factor - Negative
SSA/Ro - 1.2
SSB/La - <1.0
DS-DNA - 2
Lyme Disease Serology - Negative

I have also had trange test results with my ALT being 41 H, and my Total Cholesterol being 227 H.

Can anyone help me understand this.

 
Old 08-18-2007, 06:17 AM   #6
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Re: Head and body tremors with lupus?

Hi!

I don't know how many times I have had doctors that have indicated that the problems I had were all in my head. If you can, you should try to find a doctor at a teaching hospital. Also, even if it takes much trial and error, try to find a doctor that is willing to acknowledge that there is a problem and is willing to go the distance to find out what it is or refer you to someone else that can get you some answers.

Additionally, I saw a show the other night on Discovery Health where a patient did have Lyme disease. However, because the bacteria that causes the disease is floating around in the blood stream, it can take more than one blood test to find the bacteria, if by chance that is what you were suffering fom.

The waiting game is a truly difficult experience to go through on a daily basis, but I wish you strength and hope that you get some answers soon. I wish you all the best. Keep us posted!

 
Old 08-18-2007, 07:26 AM   #7
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Re: Head and body tremors with lupus?

THank you very much for your post. It helps just knowing that I am not alone. BUt then again.... I would rather be alone being undiagnosed instead of their being so many others that are suffering as well. Does that make sense?

 
Old 08-19-2007, 05:23 AM   #8
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Re: Head and body tremors with lupus?

Quote:
Originally Posted by ksandra97 View Post
I got my test results today and I don't know weither to be happy or sad...

I don't know what they mean because I think that I got a copy of them before the doctor did. Can anyone help???

Here they are:

Sed Rate - 15
QCRP - 0.860 H
ANA - Negative
Rheumatoid Factor - Negative
SSA/Ro - 1.2
SSB/La - <1.0
DS-DNA - 2
Lyme Disease Serology - Negative

I have also had trange test results with my ALT being 41 H, and my Total Cholesterol being 227 H.

Can anyone help me understand this.

Does your labwork show what is within normal range? It looks like there is something going on. Your CRP reacts to inflamation in the body. Have they done an LP? I know you have had MRIs of he brain and spine but my lesions started out so small they were not detected. Did they do antisphoidal? What does it say is normal for DS-DNA? That one is positive in my blood work too as well as RoSSA. My RO was highly positive at initially. I cant remember exactly but it was like a 2.9 or 2.6 or something like that. It does somehow effect the ANA and make it show negative, but I have no idea how that works, just that I have been told this by my dr and have read it many places as well. But my ANA did eventually turn positive.

The ALT is a liver enzyme and also can have to do with the muscle problems. Mine will get pretty high too. I am about to have a muscle biopsy to check out polymyelitis (sp). The ALT enzyme will be released by your muscles when they are inflamed as well and the CRP will also react. This is a good thing to see when you have the kind of problems you have, it tells them on paper that you are definately having problems with your muscles and they will treat you accordingly.

The MOST important thing is not the name. It took me a while to come to terms with that. It drove me nuts that I had all of this weird stuff going on and no name to put to it. The most important thing is like other posters have said before, to find a good doctor that will say "there is definately a problem" and keep digging, keep monitoring you and most importantly treat the problems that exist. Not to wait for you to hit a magic number on the list. My doctor monitors me very closely. I see him every 2 weeks and sometimes get to actually go 1 month between appointments. This has been ongoing now for 2 years, which can be expensive but he has been able to catch things before they get too far out of hand since I have been so active.

I like you started out with more neuro symptoms than anything else and it was VERY frustrating since these are not used on the criterea list at all just mentioned in the symptom list even though they can be very severe. They also diagnosed me with probable MS for quite a while before even considering lupus even though I have a sister with very mild lupus. (takes no medication at all for it unless she is having a flare and then only has to take them for around 10 days.

Just concentrate on getting treatment. Alot of doctors really hate to put the Lupus label on people for alot of reasons. My doctor was one of those. He told me that he strongly felt this was the case within a pretty short time, but said I do not want that on my record if I can avoid it due to insurance purposes. But the with or without the label the treatment would be the same.

I hope I have been of some help and I hope you have some luck and get the treatment you need soon.

Erin
Dallas TX

 
Old 08-19-2007, 06:59 AM   #9
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Re: Head and body tremors with lupus?

Originally Posted by ksandra97
I got my test results today and I don't know weither to be happy or sad...

I don't know what they mean because I think that I got a copy of them before the doctor did. Can anyone help???

Here they are: Normal Ranges

Sed Rate - 15 - 0-20
QCRP - 0.860 H - <0.8
ANA - Negative
Rheumatoid Factor - Negative
SSA/Ro - 1.2 - <25.0
SSB/La - <1.0 - <25.0
DS-DNA - 2 - <25.0 Negative
Lyme Disease Serology - Negative

I have also had trange test results with my ALT being 41 H, and my Total Cholesterol being 227 H.

Can anyone help me understand this.


I want to thank you for your post. I gave me some insight into being calm. My problem with that is that, it would be alot easier if I were being treated. THey only thing that they want to treat me with is antidepressants and hypnotherapy. I am still waiting for that doctor that wants to treat me like their is something wrong other than just mental symptoms. I will keep tying though. Thank you again for your post.

 
Old 08-23-2007, 10:12 PM   #10
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Re: Head and body tremors with lupus?

Quote:
Originally Posted by ksandra97 View Post
I am new to this site and it looks wonderful. There are a lot of caring people out there. I just wanted to ask a few questions.

I have been looking over the symptoms list and I have quite a few of them. One of them that I don't see is more neurological I think anyway. I have head and body tremors. I have had them for almost a year now. I also have the severe BRAIN FOG alot lately. I have had heart palpitaions, my right shoulder and hip ache almost every night. I have headaches almost daily. I have what seems to be blood sugar problems, but my blood sugar checks fine. I go off and on with swelling all over my body. Unlike most of the symptom lists that I have checked, I have gained a large amount of weight, not lost it. I have vision problems. It seems to change quite often. One week I can wear my glasses, the next I cannot. I babble at odd times... as you can see.... I can't get my thought to come out of my mouth correctly. It is like the connection between my brain and my mouth is broken. I repeat things constantly. Most of all....I never know when I am going to have one of those days were I cannot get out of bed becasue I just can't seem to wake up. I will be fine one day and the next there is not getting out of bed. When I go out side when it is hot it just zaps me and I can't do anything. If I sweat my face turns red and burns...it feels as though my sweat were made of acid.... there is more, but I am quiting....

I have not been diagnosed yet... except for the ones that tell me it is all in my head or that I am doing this to get disability... they actually sent that in to disability so I got denied... I really want to be sick and shake all the time....yeah right...during my bad times I can't walk without forearm crutches to help me... and I constatly run into things like I am drunk...

Can someone answer any of this....I had the blood tests yesterday, but I am still waiting for the results.... I just don't see the conection with the tremors...Do you?

I am so tired of basically being told that I am crazy!!!

Ksandra97, I too am new to this site. I also have not been clearly diagnosed yet, but I have been lucky from what I read on here, that so far I have not been told I'm "crazy". I don't have the problems with walking with crutches, however I do walk around a lot as if I were drunk. Running into things, doors, etc. Speaking of tremors...just in the last couple months I have been experiencing something new (that seems to happen a lot to all of us it sounds like-new symptoms that is) I'm not sure what I would call them, and I've never had a seizure, but it feels almost like maybe a tremor? Like I have no control over which ever body part is going through that. It is a bit scary probably because it is NEW and I'm not sure if I'm going to go into a seisure,, or just stay at this tremor like state. Wish I could explain it better, but talk about the foggy brain thing,,,I'm really experiencing that right now. Wish I had some answers for you, I just don't. Thought maybe just letting you know I have had some same feelings. The sight thing sounds just LIKE ME...some days I can barely see, then the next day it is more clear, but far from perfect. And my "brain fogs" Somedays I can work through things, but most days I just can not. My brain just SHUTS DOWN. I was wondering if other people experience the terrible "sleeping mode". It sounds like you do what I do, some days I just can't get out of bed. Of course exhaustion always comes with it, but for the last two days I guess, I've lost track of time, I am like in a sleep coma thing. I was outside weed eating a couple days ago (was having a good day) but does anyone know if maybe because I was out in the hot sun if this exhaustion and sleepiness could perhaps be from that? Headaches, my goodness, been really fighting one for a week and a half at least, but today that seemed to let up. I don't have swollen joints like many of you, swollen lids, yes! If you have time to write again I'd be interested if you could explain in more detail how the tremors feel to you. I'm curious if that's what I'm doing. PLEASE don't let anyone make you feel like you've gone over the deep end! There are so many variations of symptoms with this disease, stick to your guns about the way you feel until you fine someone who will finally put your fears to rest that you are not "crazy".....and who will believe in you and help you. May I ask if you see a Rheumy or some other Dr.? Just curious!
Bless you, and hang in there.

 
Old 08-24-2007, 02:21 PM   #11
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Re: Head and body tremors with lupus?

[/I][/I][/B]
Quote:
Originally Posted by Angie10 View Post
Hi!

I don't know how many times I have had doctors that have indicated that the problems I had were all in my head. If you can, you should try to find a doctor at a teaching hospital. Also, even if it takes much trial and error, try to find a doctor that is willing to acknowledge that there is a problem and is willing to go the distance to find out what it is or refer you to someone else that can get you some answers.

Additionally, I saw a show the other night on Discovery Health where a patient did have Lyme disease. However, because the bacteria that causes the disease is floating around in the blood stream, it can take more than one blood test to find the bacteria, if by chance that is what you were suffering fom.

The waiting game is a truly difficult experience to go through on a daily basis, but I wish you strength and hope that you get some answers soon. I wish you all the best. Keep us posted!
Boy you are NOT kidding about the "waiting game"! It is so frustrating to say the very least. First please let me say that I hope I'm posting correctly, I post after the other person's post? I did click on my name (somewhere) I apologize HONESTLY my memory is so dang foggy..anyway, it said that NancyAlex does NOT belong to any whatever.....so I've been playing around with the computer to try and belong somewhere,,,:-)...I just can't figure it out. If anyone has any suggestions I sure would appreciate it. Please be assured that I am for real! Just don't know how to join things obviously. Anyway, I can't find where I posted about the exhaustion thing and maybe did that have anything to do with being in the sun? This was actually why I have not gotten on this computer, I was afraid I wouldn't do it right or explain myself right. Honestly, I used to be "normal"...whatever that is. Now I have a hard time communicating. It seems that my brain functioning shuts down so easily, just at the least bit of stress and/or exhaustion. I definitely am not in control anymore and I want to be. I write how I am feeling "at that time" and I may be feeling kind of strong one time and totally out of control of my life the next time. I just hope I don't do anyone more harm than good. I just HATE feeling so alone you know? My husband and kids try real hard to understand, but it's hard for me to understand let alone them...luckily they do know me well enough to know I WAS a strong person who had to be in control.....and get everything done,,so they know I'm not "faking it". Like someone else said in a post, yeah, Like I would want to fake having to walk with crutches,,,,,being exhausted all the time, etc. Guess whether I want to admit it or not, some people MUST think it's a "mental" problem. YEAH, it can turn out to be a mental problem the longer it goes on, or at least to me it does. Anyway, just thanks for listening, it's good to get things off my chest without putting my family through more you know? Blessing to you all, Nancy

 
Old 08-25-2007, 07:42 AM   #12
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Re: Head and body tremors with lupus?

Quote:
Originally Posted by NancyAlex View Post
If you have time to write again I'd be interested if you could explain in more detail how the tremors feel to you. I'm curious if that's what I'm doing. PLEASE don't let anyone make you feel like you've gone over the deep end! There are so many variations of symptoms with this disease, stick to your guns about the way you feel until you fine someone who will finally put your fears to rest that you are not "crazy".....and who will believe in you and help you. May I ask if you see a Rheumy or some other Dr.? Just curious!
Bless you, and hang in there.
Let's see if I can explain this better. My head tremor feels like someone else is in control of my muscles. My head shakes all on its own. I can make it stop momentarily, but as soon as I let my muscles loose from holding it, it's off the the races again. As far as my other body twitches...my arms have shaken like my head and so have my legs if I hang them off the bed. I have also had it feel like ants were under my skin crawling around. That mainly happened from the waist down. Now when I am lying down, my foot or hand will just jerk out of no where. I can be laying perfectly still and "POP" up comes my foot or my hand. My arm or leg does not move with it, just the extremely, like it had its own mind. I also have had the muscle twiches where your eye will twitch or your mouth will quiver... well I have multiple ones of those even in my butt and thigh muscles. That was mainly towards the beginning of whatever this is. I don't get those that much any more. It is more whole muscle movements or body part movements. The thing that I find so strange...as if the whole thing is not strange..is that when my head moves or sometimes my extremeties... if, say you put your hand on the back of my neck while my head is shaking... you cannot feel the muscles moving. Is that weird or what... anyway, I hope that I have explained this in a way that will help you. Please let me know.

 
Old 08-31-2007, 03:51 PM   #13
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Re: Head and body tremors with lupus?

ksandra97, it really sounds like you are suffering from the neurological effects of Lyme Disease. I know you said that your Lyme test was neg. but the standard Lyme test that doc's use is 70% inaccurate (false Negatives) most poeple that I know that have Lyme had negative elisa titers. There is a doctor named Dr. Charles Crist in Springfield, MO. he is an Internal Medicine doc that specializes in Lyme Disease and will test you with with much more accurate tests through IGeneX labs. He also will go over all your other tests to rule out other oatoimmune diseases. Lyme causes everything that you have mentioned including the Hypo and the elevated ALT. this is not a disease to let go, please get it ruled out. go see this doctor, he is highly recommended by many. poeple travel from all over the US to see him. Go on the Lyme board and you will understand what I am talking about how easily it is misdiagnosed. Good luck, and I am so sorry that you are going through these terrible things, I know exactly how you feel. Sarah

 
Old 10-09-2007, 08:34 PM   #14
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Re: Head and body tremors with lupus?

I am sorry that it has taken me so long to see this post. I have been off of the boards because of a friends proding. I wish that I had not listened. I will check into that doctor as soon as I can. Thank you very much.

 
Old 02-08-2008, 06:33 AM   #15
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Re: Head and body tremors with lupus?

Hi, ksandra I have those tremors too. Talk about learning to live a whole new life style. They give my Lyrica to mamage the tremors. I have found that my personality has changed as well. I become quite and withdrawn at times. And I am a very out going person, I love people; I do home health care. But sometimes I get so irritable too. Its hard to take care of you when you take care of so many others.Do you have any other questions? grinche41

 
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