Vascular spasm, antiphospholipid antibody syndrome, bilateral hand tremors

[kd re: longstanding MR]

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

[CCF Neuro[P] MD, RPS]

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

[kd to Dr. RPS]

Thanks.  Your information was helpful.  I have been on Plavix for about 2 years (as well as a multitude of other medications).  I have isolated systolic BP.  The meds don't seem to be able to control it but I'm in the low 50s (SBP) and that seems to be the best place for me function-wise.  I recently tried to add aspirin to the regimine (sp?) and it made me ill so I had to quit.  I'll have to look to see if I had a PTT.  The test findings were based on a cardiolipid profile and a couple of others.
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.

[CCF Neuro[P] MD, RPS]

Dear KD:

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

[Betty Powell]

To KD and the CCF Neuro...
   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

[kd- To Dr. RPS - I wrote earlier but the]

message didn't "take."
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

[kd - to Betty]

I respect your need to defend the doctors who respond on this site.  They do, indeed, perform a very valuable job.
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

[Betty Powell to KD]

Hi,
  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

[kd to Betty]

I was 43 when I had the first stroke.  It started the day before my endartarectomy.  It can only be seen with a diamox spect test so people seeing my MRIs or CTscans deny it is there.  I, however, was very aware of its consequences in terms of behavior, mood swings, math skills, speech and language skills.  The second was last Sept. (CA:48)  They didn't know what it was.  CTScan showed nothing. Blood tests showed nothing. Tried an EEG on an outside shot and found focal temporal seizure activity.  Follow-up MRI showed parietal lesions.  The February 14th episode showed further parietal lobe damage but because I waited a day to go to the hospital, it showed up on the CTScan.
  The TIA/Stroke/Migraine diagnosis problem has pretty much convinced me that depending on the hospital's definition of stroke gets you treatment or just sends you home.  On 1  occasions my stroke was considered migraine and twice it was considered TIA.  The last 2 times I was in the ER (including one of the strokes) I was told there was nothing they could do for me, to go home.  They gave me NO treatment.  But because I did not have a clot that they could see on the CTScan and no hemorrhage, that was the end of it.
  I can tell the difference between my migraines and TIAs based on visual and other symptomology.  The doctors won't hear it.  In fact, a reputed neurologist has told me I am not at risk for stroke.
  So, I guess I can't help you too much on that one.  I know what I am aware of from my experiences, those of others, what I have read, and of people I have worked with; but those differentiations don't necessarily jive with some doctors who are in charge of your care.
  The antiphospholipid dx is very new.  I have heard that the level fluctuates and that the cardiolipin that was abnormal (2x normal) was not the typical one to be off.  However, it, combined with several other "weird" blood test findings made the dx possible.  I'm going to have to go back to my notes to see which ones they were.
I hope this was helpful.
I'm not sure it was.
It really sent me into a depression when I read your initial posting and that of the neuro.  I NEVER forsaw that one.  So, I'm really glad you took the time to write again.
kd

[Betty Powell to KD]

Hi,
  Thanks for your response...I have a migrane variant that is classified as BAM along with porphyria and I get some strange neuro pronlems but with no long tern effects that how I am sure its not been a stroke..My mother has had a few TIA's herself, but her CT scans are normal..I have not had a CT or MRI in 4 years.
But all have been normal...I have numbness and tingles and sllep paralysis, but my neuro exams are all normal..except for brisk reflexes.  I get really bad headaches in the back of my head at the base of my neck  Thats why they say Basiler Artery migrane and I get migranes without pain.
I have porphyria which produces many of the same symptoms....I do hope that your able to keep this under control. I hope that you encounter no further Strokes...Take care of yourself and take your meds and i hope that you find a doctor who can take good care of you and keep you as healthy as possible considering your situation.
I do wish you all the best..Take care   Betty

[Tammy]

I need some advice I started having pain 3 years ago Pain on the left side of my face and in the back of my neck Test were done CAT scan MRI and MRA I only thing they coulde find some  narrowing in the venterbrel artery on the left side I have horrible pain from all the pain I have fibromaliga I am so afraid I will have a stroke I  would like to have your in put on this

[CCF Neuro[P] MD, RPS]

Dear Tammy:

Sorry to hear about your pain.  If you had a stroke, there would have been changes on the MRI.  Since you are telling me that your MRI was read as normal, I do not think you had a stroke.  The vertebral artery provides circulation for the posterior part of the brain and not the vessels that supple the face.  Sounds like you may have hemicrania cephalgia pain.  I would see a neurologist and discuss this with him/her.

CCF Neuro MD

[Sandra Stanley]

I was told that I have Fibromylgia (fibromyalgia).  I have all the 18 tender
points.  My hands hurt terrible all the time they are swollen
when I get up in the morning.  I have not found a medication
that helps a lot.  I rest and try to do all the things i should
I have TMJ ,irritable bowel, sleep disorder,headackes,morning
stiffness all of this goes along with Fibromylgia (fibromyalgia).  I have had the Arthritis test every three months for the last four years
Is this a real disease or is it a cop out by the Doctors
because they cannot find out what the problem is.  Is there
a test for this?  I know that the pain is real.
Please help!

***@****                                              

[Sandra Stanley]

I was told that I have Fibromylgia (fibromyalgia).  I have all the 18 tender
points.  My hands hurt terrible all the time they are swollen
when I get up in the morning.  I have not found a medication
that helps a lot.  I rest and try to do all the things i should
I have TMJ ,irritable bowel, sleep disorder,headackes,morning
stiffness all of this goes along with Fibromylgia (fibromyalgia).  I have had the Arthritis test every three months for the last four years
Is this a real disease or is it a cop out by the Doctors
because they cannot find out what the problem is.  Is there
a test for this?  I know that the pain is real.
Please help!

***@****                                              

[SneddonFoundation]

A related discussion, Sneddon's Syndrome was started.