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Neurology (Expert Forum)
Vascular spasm, antiphospholipid antibody syndrome, bilateral hand tremors
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Vascular spasm, antiphospholipid antibody syndrome, bilateral hand tremors
by kd re: longstanding MR, Apr 13, 2000 12:00AM
I have what has been diagnosed as premature atherosclerosis. The main problem started in my carotids but now affect all parts of my body (except the coronarys). I have PVD and a MVP 3+/4 regurgitation. They didn't know why I had the atherosclerosis. It started showing up in 1994. Since that time I have had an endartarectomy (which closed up in short order), multiple TIAs, 2 mild strokes since last Sept. On my last trip to the hospital, they basically said don't come back because there is nothing we can do until you have a massive stroke because you don't have clots and you don't have a hemmhorage. And I KNOW they can't do a whole lot after you have a massive stroke.
Last week my PVD specialist said something about vascular spasms and that might be the cause of a leg problem I had last year instead of a clot. I can't find much about vascular spasm. Can you tell me a little bit about it? What causes it? Can I control it? Could it also be causing the atherosclerosis? the TIAs? Could it also be why people have been having alot of trouble telling my TIAs and Strokes from migraine (I know the difference but I can't seem to explain it adequately to others)?
This week, my PCP tells me that (after much searching) I may have antiphospholipid antibody syndrome. Will that cause atherosclerosis? I don't have lupus. In addition, I have taken practically every blood test and some gene tests known to man and they come out normal. Is this possible? How will this affect my TIAs and strokes? The strokes have been left parietal lobe and have created a left temporal lobe seizure disorder. The left carotid is 100% blocked. There is some (<70%) occlusion of the right common and internal carotids.
One last question. In Sept. when I had the first stroke and started having the seizure disorder, I had a Jacksonian seizure of my right hand, arm, neck, chest, face, tongue, etc. Since that time, in spite of being on appropriate Dilantin levels, I get spasms of my right hand, especially when holding things or with pressure, lifting my hand up, etc. Enough to slosh liquids all over. I drop things often. The problem is that it also shows up in a milder form in my left hand. That doesn't make sense to me. It shouldn't be seizures and if it is the stroke, shouldn't it be only the right hand? Is there some connection in the brain between right and left that makes the left react the same way?
Thanks. I know this is long but it is hard to get on.
kd
Last week my PVD specialist said something about vascular spasms and that might be the cause of a leg problem I had last year instead of a clot. I can't find much about vascular spasm. Can you tell me a little bit about it? What causes it? Can I control it? Could it also be causing the atherosclerosis? the TIAs? Could it also be why people have been having alot of trouble telling my TIAs and Strokes from migraine (I know the difference but I can't seem to explain it adequately to others)?
This week, my PCP tells me that (after much searching) I may have antiphospholipid antibody syndrome. Will that cause atherosclerosis? I don't have lupus. In addition, I have taken practically every blood test and some gene tests known to man and they come out normal. Is this possible? How will this affect my TIAs and strokes? The strokes have been left parietal lobe and have created a left temporal lobe seizure disorder. The left carotid is 100% blocked. There is some (<70%) occlusion of the right common and internal carotids.
One last question. In Sept. when I had the first stroke and started having the seizure disorder, I had a Jacksonian seizure of my right hand, arm, neck, chest, face, tongue, etc. Since that time, in spite of being on appropriate Dilantin levels, I get spasms of my right hand, especially when holding things or with pressure, lifting my hand up, etc. Enough to slosh liquids all over. I drop things often. The problem is that it also shows up in a milder form in my left hand. That doesn't make sense to me. It shouldn't be seizures and if it is the stroke, shouldn't it be only the right hand? Is there some connection in the brain between right and left that makes the left react the same way?
Thanks. I know this is long but it is hard to get on.
kd
Doctor's Answer
by CCF Neuro[P] MD, RPS, Apr 13, 2000 12:00AM
Dear KD:
If you have antiphospholipid antibody syndrome, the blood test should be positive for antibodies for negatively charged lipids. One associated finding is a mildly elevated high normal to just above normal PTT clotting time. If your PTT is dead center normal then likely you do not have the antiphospholipid antibody syndrome. Vascular spasms usually do not happen in the brain as the vessels are different than in the periperal vessels (less muscle in the walls). Usually we only see vessel spasm in the brain from blood, as since you do not have a bleed, this would be unlikely. From what you tell me, the athrosclerosis is likely the culprit for your strokes. Do you also have high blood pressure? If so, this may also play into your strokes. Athrosclerosis is usually caused by too much fat in the diet, genetic disorder, or systemic disorder such as diabetes. I strongly suggest that you read Dean Ornish's book on heart disease (probably you already have). The spasms are likely not due to seizures. It is more likely due to the problem of athrosclerosis and your periperal nerves. It really sounds like you have a uphill battle to control plaque formation. I would suggest that you see your neurologist for stroke preventative medications such as plavix.
Sincerely,
CCF Neuro MD
If you have antiphospholipid antibody syndrome, the blood test should be positive for antibodies for negatively charged lipids. One associated finding is a mildly elevated high normal to just above normal PTT clotting time. If your PTT is dead center normal then likely you do not have the antiphospholipid antibody syndrome. Vascular spasms usually do not happen in the brain as the vessels are different than in the periperal vessels (less muscle in the walls). Usually we only see vessel spasm in the brain from blood, as since you do not have a bleed, this would be unlikely. From what you tell me, the athrosclerosis is likely the culprit for your strokes. Do you also have high blood pressure? If so, this may also play into your strokes. Athrosclerosis is usually caused by too much fat in the diet, genetic disorder, or systemic disorder such as diabetes. I strongly suggest that you read Dean Ornish's book on heart disease (probably you already have). The spasms are likely not due to seizures. It is more likely due to the problem of athrosclerosis and your periperal nerves. It really sounds like you have a uphill battle to control plaque formation. I would suggest that you see your neurologist for stroke preventative medications such as plavix.
Sincerely,
CCF Neuro MD
Thanks again for the information.
kd
PS - I know you don't usually answer a second time so I guess this is for some of your readers.
If you have antiphospholipid antibody syndrome, did you have an injury to your body that precipitated it? I read that that can sometimes happen. I had gangrene from a ruptured appendix in 1965 but that is surely to long ago. I am 48.
I would look at the forum on how many times I have answered postings more than once. There isn't one posting that I haven't answered multiple times. I am very offended.
CCF Neuro MD
KD, In fact what the neuro is saying is true..If you read the posts on this board there are many many instances that A CCF Neuro posts a second ,third and fourth time in the same message thread.
You are very fortunate to have been able to post on the forum, they only accept 2 a day and I have tried to post many many months...Finally one of these very helpful Docs saw one of my posts to another post and helped me out with an opinion on my symptoms.
CCF you are absolutly great, and I think its very good of your Docs to take the time to offer this service to the general public free of charge....
The docs at CCF are very honest and straightforward with their relplies yet very caring and concerned and helpful..and they won't give you any false info or attempt to diagnoise a problem over the internet...They just listen and try to help...
Just my opinion...Take Care
I'm sorry that I did not notice the previous multiple answers to questions. I have been visiting this site for years - since before you moved to the "limited" questions. I very frequently search for answers in the archives. However, I also visit another site that restricts the responses by the doctor to one. I mistakenly thought that that was where I was. I was so excited to be able to post that I made a statement in error. I am sorry that you took offense. I am confused by the degree that it offended you and Betty. As I said in my earlier post, your response was very helpful.
If you would like to answer that 2nd question, I'd love to read your response. I am well aware of the service you provide and appreciate it. It was just an honest mistake on my part and no reflection on you or how you do your job.
Have a good evening,
kd
The thing that bothers me is that you, without knowing me, decided to write in a manner that was accusatory. I, too, have tried to get on this site for months. Since September, actually, with questions. I know how few places there are and when I was actually able to get on, I was thrilled. So, I made a mistake regarding where I was. And, all I was asking was for someone to respond to my illness.
I expect only a few more years to live because of the complexity of my problems. I have had multiple strokes. I am lucky to be here today.
I am going to ask you, since you seem to be pretty articulate (I'm saying this as a compliment), to try to ask the person you feel is in the wrong to explain themselves so that more feelings don't get hurt. It might actually open up a dialogue that will fix rather than divide.
kd
I agree with your post and I do think it was a miscomunication of words..
I am sorry to hear about the fact that you have had Strokes...This is awful to hear for anyone. Have you been Diagnoised with Antiphospolipid syndrome positively..I was suspected to have this at one point but it was negative in two seperate tests....
How old were you when the strokes occured and how did they present themselves..what were your symptoms and how did they determine they were indeed strokes versus TIA's...Just curious in reference to my own problems and out of concern for you as a fellow sufferer..
I do hope that you have no further stroke activity..and that you can keep the syndrome under control....
Hope to hear from you again soon...
Feel free to e-mail me privately with anything..
***@****
Take care Betty