Aa
Whole body tremor
In December I had pneumonia which has since cleared. Then among my legs being hurt in a fall, I was in a traumatic situation in January. Now, the doctor says that I overwhelmed my heart. Went for stress test today, seemed okay except that my heart is still much faster than before and my Qt interval has increased to about 0.44-0.45msec.
Also, I now am having a single (usually) whole body spasm when laying down and sometimes when shaking. Also, having trouble with talking and an unstable waist/tremor when standing? Pseudo-exaserbation or new attack? Any other thoughts? Thanks!
NeedAnswers54
Also, I now am having a single (usually) whole body spasm when laying down and sometimes when shaking. Also, having trouble with talking and an unstable waist/tremor when standing? Pseudo-exaserbation or new attack? Any other thoughts? Thanks!
NeedAnswers54
Well, good thing I did not bomb-fire the insulting neuro as I could only get into him. He checked my brain and said it was okay. I thought he was going to check my spine for lesions as that is where they all are brave enough to show themselves.
Hospital had cervical MRI. My orders said brain. Then they said they had both orders. They only did the brain. Tech thought I had Parkinsons because I could not hold still even with two extra strength vicodin and four valiums. Neuro said to come back in two months as the brain was normal. I went and got the results myself. The results were pretty normal. They stated a few hyperintense loci, mild atrophy, and borderline enlarged pituitary. I guess that means that I am just going crazy or something. He said that it meant was my brain was okay; but, he was not guaranteeing anything else. I do not understand why he is not doing my spine--especially when on of the spots is so large that he just did not believe it to be a lesion. Now they are suspecting cancer elsewhere in me. So, I told him I would really like another spinal MRI for that if nothing else. I have had four brain and six cervical MRIs. The last five cervical MRI were abnormal. They still have never done a thoracic when it was thought I could be having repetitive TM. I just do not get it. Perhaps I am missing something. I also do not understand why he is not doing any SSEPs. Well, I get into the MS clinic around September. But, they wanted to do the surgery right away.
Oh, and then my blood tests dropped to normal since last year--which is what I told them I thought would happen once I stopped the Depakote for my migraines. My FSH went from normal to around 300 on the depakote. Post-menopausal is 23 to approximately 100. The higher the number--the more menopausal you are. OB would not rerun the test. Neuro said that I was crazy that depakote does not interfere with a woman's cycles. I am still having them normally now.
Well, I called the manufacturer only to discover that 10% of all the women in the testing program had to drop out because of amenorrhea. I wonder what their FSH level was? I told the manufacturer they needed to have this listed under side-effects because the pharmacists at Walgreens and other pharmacies had no indication of that as a side-effect, either. They have now stated that if the med causes a change in your menstrual cycle that you should call your doctor at once as this could be serious side-effect.
My OB, who is very cautious would not rerun the FSH as it was sooo high. She agreed that I should never take that drug, again. But, she stated that even though she believed me; she thought that there was no way that it could cause my numbers to change that much. Well, surprise, surprise. I went to another new doctor who reran that test and it came back normal--around 15 or so. So, I guess I am not too crazy after all. If going from 15 to 23 can mean a person is menopausal versus fertile, I can only imagine that going from normal to 300 in weeks and then back to 15 probably has added somewhat to my emotional stress. That explains why everytime I take the med that (Sorry for being so personal, you guys.) Anyway, I intend to tell the doctors (neuro and OB) that told me that that was impossible what the lab tests showed. Also, I intend to tell that same neuro who said that I also could not have MS because my brain MRI was not showing it (even though I have multiple lesions in my spinal cord) that he needs to reconsider either thinking before he passes judgement or speaks---or better yet he needs more education and should read what is posted on this sight for better information as to what the patients are really going through.
A neuro since then has diagnosed me with MS; but, the neurorad thinks that there may be more or something atypical going on which would require different/additional treatment. The neurorad does agree that this may be MS. So, that is why I really need some better knowledge before undergoing any surgery. I am just going to hold off--if indications appear that I can--until I get more information and get into the MS clinic.
Anyway, I just wanted to post the depakote situation, as I felt that this was really important to so many of the females out there who may also suffer migraines, or seizures, or have been diagnosed bipolar when it may really be MS or something else mimicking it. Of course, one can have more than one problem. I am just trying to add additional caution to all you females and spouses and significant others out there in out cyberfamily.
Thanks for listening to my experience. I intend to contact the manufacturer, again.
Hope everyone is doing better!
Take care and God bless,
Torey
Hospital had cervical MRI. My orders said brain. Then they said they had both orders. They only did the brain. Tech thought I had Parkinsons because I could not hold still even with two extra strength vicodin and four valiums. Neuro said to come back in two months as the brain was normal. I went and got the results myself. The results were pretty normal. They stated a few hyperintense loci, mild atrophy, and borderline enlarged pituitary. I guess that means that I am just going crazy or something. He said that it meant was my brain was okay; but, he was not guaranteeing anything else. I do not understand why he is not doing my spine--especially when on of the spots is so large that he just did not believe it to be a lesion. Now they are suspecting cancer elsewhere in me. So, I told him I would really like another spinal MRI for that if nothing else. I have had four brain and six cervical MRIs. The last five cervical MRI were abnormal. They still have never done a thoracic when it was thought I could be having repetitive TM. I just do not get it. Perhaps I am missing something. I also do not understand why he is not doing any SSEPs. Well, I get into the MS clinic around September. But, they wanted to do the surgery right away.
Oh, and then my blood tests dropped to normal since last year--which is what I told them I thought would happen once I stopped the Depakote for my migraines. My FSH went from normal to around 300 on the depakote. Post-menopausal is 23 to approximately 100. The higher the number--the more menopausal you are. OB would not rerun the test. Neuro said that I was crazy that depakote does not interfere with a woman's cycles. I am still having them normally now.
Well, I called the manufacturer only to discover that 10% of all the women in the testing program had to drop out because of amenorrhea. I wonder what their FSH level was? I told the manufacturer they needed to have this listed under side-effects because the pharmacists at Walgreens and other pharmacies had no indication of that as a side-effect, either. They have now stated that if the med causes a change in your menstrual cycle that you should call your doctor at once as this could be serious side-effect.
My OB, who is very cautious would not rerun the FSH as it was sooo high. She agreed that I should never take that drug, again. But, she stated that even though she believed me; she thought that there was no way that it could cause my numbers to change that much. Well, surprise, surprise. I went to another new doctor who reran that test and it came back normal--around 15 or so. So, I guess I am not too crazy after all. If going from 15 to 23 can mean a person is menopausal versus fertile, I can only imagine that going from normal to 300 in weeks and then back to 15 probably has added somewhat to my emotional stress. That explains why everytime I take the med that (Sorry for being so personal, you guys.) Anyway, I intend to tell the doctors (neuro and OB) that told me that that was impossible what the lab tests showed. Also, I intend to tell that same neuro who said that I also could not have MS because my brain MRI was not showing it (even though I have multiple lesions in my spinal cord) that he needs to reconsider either thinking before he passes judgement or speaks---or better yet he needs more education and should read what is posted on this sight for better information as to what the patients are really going through.
A neuro since then has diagnosed me with MS; but, the neurorad thinks that there may be more or something atypical going on which would require different/additional treatment. The neurorad does agree that this may be MS. So, that is why I really need some better knowledge before undergoing any surgery. I am just going to hold off--if indications appear that I can--until I get more information and get into the MS clinic.
Anyway, I just wanted to post the depakote situation, as I felt that this was really important to so many of the females out there who may also suffer migraines, or seizures, or have been diagnosed bipolar when it may really be MS or something else mimicking it. Of course, one can have more than one problem. I am just trying to add additional caution to all you females and spouses and significant others out there in out cyberfamily.
Thanks for listening to my experience. I intend to contact the manufacturer, again.
Hope everyone is doing better!
Take care and God bless,
Torey
Thanks to all of you, again!
Floridamom2 you may have hit the nail on the head. I usually hit my thumb...sometimes all three of them that I am seeing. Thank goodness the pain is not polypain like my polyvision.
You are all just too humorous, yet quite sensible, at times.
Thank you again.
God bless and take care!!!
Floridamom2 you may have hit the nail on the head. I usually hit my thumb...sometimes all three of them that I am seeing. Thank goodness the pain is not polypain like my polyvision.
You are all just too humorous, yet quite sensible, at times.
Thank you again.
God bless and take care!!!
Here's a new thought . . . . . . . . I have two very strong willed stubborn but wonderful children. Well all I have to say is the sky is blue and they both start coming up with their own answer to that question, like .. . .
"no, the sky is turquoise and white" or "no, the sky is BABY blue, not blue"
Maybe us limbolanders need to approach our soctors in the same way - maybe walk in the door saying
":All I know is that I have done lots of research and this is NOT MS" maybe then they would make sense instead of just saying
"well I don't know what it is but it's not MS" Reverse psychology on a med school graduate, you say?? Yeah, if it looks like a child, and acts like a child, maybe we should be traeting some of these weanies like children.
That's it, I am off the soapbox once again, off to see a baseball game where the rules are fair and a weanie is just something I like to have as a snack!!
Have a nice night all!
Kristin .
"no, the sky is turquoise and white" or "no, the sky is BABY blue, not blue"
Maybe us limbolanders need to approach our soctors in the same way - maybe walk in the door saying
":All I know is that I have done lots of research and this is NOT MS" maybe then they would make sense instead of just saying
"well I don't know what it is but it's not MS" Reverse psychology on a med school graduate, you say?? Yeah, if it looks like a child, and acts like a child, maybe we should be traeting some of these weanies like children.
That's it, I am off the soapbox once again, off to see a baseball game where the rules are fair and a weanie is just something I like to have as a snack!!
Have a nice night all!
Kristin .
Thank you!
I have eliminated all caffeine, including chocolate (my beloved). The docs used to prescribe caffeine in my migraine medicine and it had never caused me a problem. I figured I would try some atenolol and xanax or valium, if possible. Tried to get thyroid checked because of the eyes, spasms, and heart palpitations. Finally, found a doc that suggested it to me. It is probably okay, but, my eye doctor who I had been seeing for over four years told his trainee that "Here was a perfect case of Graves eyelids and eyes" and then asked me what treatment I had had. Funny thing is, I had never been diagnosed with a thyroid problem. Then, when I told him it is in my family but I have never tested positive in the past he told me to not worry about it. Thyroid cancer, goiter, and other thyroid maladies run in prior relative(s). He is not willing to agree with my MS diagnosis as he says he does not see it in my eyes (yeah). He says it is all anxiety and I need to try and relax. Okey-Dokey...hmmm. Yet, he admits that something is not processing correctly in my brain when I see words since my toxic chemical exposures. Go figure. Well, I wonder what he thinks the lesions in my spinal cord are from, then? He has no suggestion and does not jump at ADEM or TM. So, I just do not know where to go. Yet, he admitted the MS research clinic might be a good start. So, I go at the end of the summer, if they agree to see me. I am keeping my fingers crossed.
Take care and may God continue to bless all of you.
I have eliminated all caffeine, including chocolate (my beloved). The docs used to prescribe caffeine in my migraine medicine and it had never caused me a problem. I figured I would try some atenolol and xanax or valium, if possible. Tried to get thyroid checked because of the eyes, spasms, and heart palpitations. Finally, found a doc that suggested it to me. It is probably okay, but, my eye doctor who I had been seeing for over four years told his trainee that "Here was a perfect case of Graves eyelids and eyes" and then asked me what treatment I had had. Funny thing is, I had never been diagnosed with a thyroid problem. Then, when I told him it is in my family but I have never tested positive in the past he told me to not worry about it. Thyroid cancer, goiter, and other thyroid maladies run in prior relative(s). He is not willing to agree with my MS diagnosis as he says he does not see it in my eyes (yeah). He says it is all anxiety and I need to try and relax. Okey-Dokey...hmmm. Yet, he admits that something is not processing correctly in my brain when I see words since my toxic chemical exposures. Go figure. Well, I wonder what he thinks the lesions in my spinal cord are from, then? He has no suggestion and does not jump at ADEM or TM. So, I just do not know where to go. Yet, he admitted the MS research clinic might be a good start. So, I go at the end of the summer, if they agree to see me. I am keeping my fingers crossed.
Take care and may God continue to bless all of you.
Hi!
I have the whole body tremor. I am undiagnosed still but have had it since my symptoms began. My "vibration" as I call it gets stronger when I have flares, am tired, excited, or have had too much caffeine.
I had an EEG today and although I am not sold on this new neuro yet he has stated that the EEG has proven that I have some kind of Hyperactive right side cortical activity.
Due to my problems in other areas right now I did not have the strength to question him. He prescribed a medication called Topamax and said it should help with this. It is a migraine prevention medication and he said something about these two things being related.
I know I sound crazy but I am going to try it, mainly because he said I will loose weight!!. I am still not sure if he meant the medication for the tremor or my other symptoms of weakness, blurry vision, etc.
I am sorry you have this though and if I ever get rid of it I will absolutley share what made it stop!
Take care!
Kristin
I have the whole body tremor. I am undiagnosed still but have had it since my symptoms began. My "vibration" as I call it gets stronger when I have flares, am tired, excited, or have had too much caffeine.
I had an EEG today and although I am not sold on this new neuro yet he has stated that the EEG has proven that I have some kind of Hyperactive right side cortical activity.
Due to my problems in other areas right now I did not have the strength to question him. He prescribed a medication called Topamax and said it should help with this. It is a migraine prevention medication and he said something about these two things being related.
I know I sound crazy but I am going to try it, mainly because he said I will loose weight!!. I am still not sure if he meant the medication for the tremor or my other symptoms of weakness, blurry vision, etc.
I am sorry you have this though and if I ever get rid of it I will absolutley share what made it stop!
Take care!
Kristin
Torey, have you had an MRI of the brain or spine? With your upper body tremors and nystagmus (eye twitching) it sounds like you've got some activity going on in the brain.
Thank you everyone! I have not been able to access this site since January. Nor have I been able to send letters to some of you because it keeps saying that certain people are unaurthorized users although I have received mail from you. So, please, do not be frustrated if you have not received letters from me, as I have been trying to contact you. I have contacted MedHelp, again. I was finally able to post this yesterday. Thank all of you again for your support as I have noone else to talk to that understands.
Also, I am having tics in one eye which then spreads to the other. Today I went to the neuroopthalmologist and he said my eyes looked like graves disease. He asked if I had had radiation on my thyroid. I told him "No, but that thyroid problems and thyroid cancer run in my family. I was concerned that with the rapid heartrate, the eye tremors, and the body spasms that I was developing thyroid." He then told me that I had nothing to worry about and that such spasms are normal...just as a cat has them. I had one in church during a prayer in church and while singing. Shortly thereafter I saw his receptionist and my eyes started twitching and I went into a tremor. She became scared and told him. But, noone did anything. I see a cardiologist soon. OB is afraid I have cancer and wants to take my uterine lining out. I have had this scare before and I think that I just have some weird inflammatory thing going on in my system. The neuro said that he had no idea what was going on. Now I just found out my Mother is terminal with upper body cancer (breast or thyroid or thymus or something. She has a substernal goiter). Told my doctor about the multiple thyroid problems in the family and that is when he told me not to worry about it. Kind of strange after he said I looked like the classic case of Graves disease when I hit the chair. I do not know what to think, now. I do not understand why noone is doing a thyroid or other endocrine or immuno workup as I have had high ANAs in the past.
Autonomic dysrhythmia is new to me. Thank you for that info, also.
Best of luck and care to all of you. My prayers are with you!
Torey
Also, I am having tics in one eye which then spreads to the other. Today I went to the neuroopthalmologist and he said my eyes looked like graves disease. He asked if I had had radiation on my thyroid. I told him "No, but that thyroid problems and thyroid cancer run in my family. I was concerned that with the rapid heartrate, the eye tremors, and the body spasms that I was developing thyroid." He then told me that I had nothing to worry about and that such spasms are normal...just as a cat has them. I had one in church during a prayer in church and while singing. Shortly thereafter I saw his receptionist and my eyes started twitching and I went into a tremor. She became scared and told him. But, noone did anything. I see a cardiologist soon. OB is afraid I have cancer and wants to take my uterine lining out. I have had this scare before and I think that I just have some weird inflammatory thing going on in my system. The neuro said that he had no idea what was going on. Now I just found out my Mother is terminal with upper body cancer (breast or thyroid or thymus or something. She has a substernal goiter). Told my doctor about the multiple thyroid problems in the family and that is when he told me not to worry about it. Kind of strange after he said I looked like the classic case of Graves disease when I hit the chair. I do not know what to think, now. I do not understand why noone is doing a thyroid or other endocrine or immuno workup as I have had high ANAs in the past.
Autonomic dysrhythmia is new to me. Thank you for that info, also.
Best of luck and care to all of you. My prayers are with you!
Torey
Sounds like a new flare to me... but you would know best whether these were new symptoms, or just old ones coming back.
Your description of your heartrate reminded me of a condition... which i can't remember the name of... but I think it's autonomic disrhythmia... but don't quote me! Basically, the brainstem gets a lesion where the medulla oblongata regulates heart rate and blood pressure. People with this problem often faint upon standing, because the body doesn't know that it's supposed to raise the blood pressure when you stand up.
Definitely go to the doctor, as a whole-body tremor sounds like no fun.
Your description of your heartrate reminded me of a condition... which i can't remember the name of... but I think it's autonomic disrhythmia... but don't quote me! Basically, the brainstem gets a lesion where the medulla oblongata regulates heart rate and blood pressure. People with this problem often faint upon standing, because the body doesn't know that it's supposed to raise the blood pressure when you stand up.
Definitely go to the doctor, as a whole-body tremor sounds like no fun.
HELLO THERE,
I HAVE TREMORS FOR 4 YRS. NOW ON THE
LEFT SIDE OF MY BODY.
DR. GAVE ME #5 XANAX. IT WORKS WELL.
I WOULD TELL YOUR DOC. WHAT IS GOING ON.
BETTER SAFE THEN SORRY.
GOOD LUCK
KITT
I HAVE TREMORS FOR 4 YRS. NOW ON THE
LEFT SIDE OF MY BODY.
DR. GAVE ME #5 XANAX. IT WORKS WELL.
I WOULD TELL YOUR DOC. WHAT IS GOING ON.
BETTER SAFE THEN SORRY.
GOOD LUCK
KITT
When I am not taking Gabapenton I get tremors when lying down also.
It is like I am trying to do a kip-up.
When not lying down my arms flail out like I am trying punch someone.
It is like I am trying to do a kip-up.
When not lying down my arms flail out like I am trying punch someone.
I wish I had a quick answer to this question, but all I can suggest is to let your doctor know what is going on. I have never heard of this full body tremors when laying down. No tremors from MS I have heard of.
This definitely needs to be reported to your doctor. Please keep us informed about what he says. I am very interested to know.
Hope you feel better,
Heather
This definitely needs to be reported to your doctor. Please keep us informed about what he says. I am very interested to know.
Hope you feel better,
Heather
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