Help! I'm Freaking out here!

[santana8]

As some of you know, I went to the hematologist to get checked for clotting disorders to make sure that stroke was completely ruled out two weeks ago. I was not supposed to go back for the  results until May 7th. Stupidly I called the office today to see if they had came back yet. The nurse called me back and said that they had. She also said that I tested possitive for two of the test. One was the Factor V Leiden , which I have one nephew who has tested possitive with, and the other I can't remember the name as I have been in a state of shock since she said that to me this evening. I wished I hadn't called because I didn't get to talk to the doctor and now I am just sitting here all worried up and really confused. My neuro said he didn't think I had a stroke, but another time said that it may end up being vascular. This is what promted me to ask for the testing along with family history. Now what do I do with this information? Does this mean I had an iscemic stroke. The neuro said that there was no evidence of  large artery stroke. Could these lesions on my brain MRI be from a TIA ? Can the neuro not tell the difference in demyelinating lesions and vascular infarcts? I am so confussed and scared and tired of not knowing what happened to me two years ago! I need some advise please!

Santana

[Siddy1]

HI again,

In reply to your first post, they decided that I was absolutely not a candidate for strokes. Non-smoking, normal weight, normal blood pressure, normal cholesterol, etc. I had an MRA (magnetic resonance angiography) and also a Carotid doppler which were both normal.  I had previously had a TEE  (transesophageal echocardiogram) to see if I had a hole in my heart, which I don't.

Re: your second post: No, I don't have my blood checked, in fact I haven't been to a doctor in over two years (except for my surgery incident when I tripped and fell).  

I do take 3 baby aspirin every day. Probably should make an appointment to go back and see the Neuro after 2 years, but am reluctant to do so.

Best wishes
Marcie

[santana8]

I forgot to ask you something! Do you have to get your blood checked regular with this condition? If so how often? Are you on any treatment at all for it now?

Santana

[santana8]

I am not dx yet!  I had multiple white matter lesions about 10, but my LP was negative and showed no O banding. Did they say that the two lesions was for sure not a stroke? Did they do further testing to rule out an ischemic stroke on you?

Santana

[Siddy1]

Yes, I have been dxed with MS.  SPMS to be exact. I had 2 or 3 brain lesions.  I alos had 2 oligoclonal bands in my CSF.  Yes, I have MS and one copy of the V-Leiden gene, which as I said was only discovered when the blood tests were done along with the spinal, etc. for MS.

They did not say that the V-Leiden was anything to do with my MS.   Apparently there are  lifestyle factors that combine with thrombophilia to increase your risk of blood clots and one of them, believe it or not, is autoimmune disease

http://www.dnadirect.com/patients/tests/blood_clotting/what.jsp

Marcie

[santana8]

Are you dx with MS? Did you have brain lesions? And did the factor V Leiden have anything to do with the lesions if you had them, or do you have both MS and Factor V?

Santana

[Siddy1]

Sorry I hadn't finished and certainly never hit the post button but it went through anyway.

I was on wharfarin for one year. Anyway, it all fell into place  as to why I got the clot when they were doing tests for MS, and the V-Leiden thing came up. One copy is better than 2 copies obviously.  There are probably many more people out there with one copy but don't know it. After all, I have gone all my life without knowing.    Makes you about 5X more likely to get a blood clot under certain conditions. I was on Premarin at the time and had been for 12 years so I came off that.  I had already stopped smoking years before. . I was put on Plavix, they said for life, but I stopped taking it.  Ironically, 3 years after my blood clot, my brother got one in the same leg. Now he believes me that it might be hereditary.

Incidentally, it is not a bad thing to know. If you ever have major surgery, which I have, they take even more stringent precautions. Last surgery I had Lovenox (blood thinner) injected  2X daily in my stomach for four months.

Marcie

[Siddy1]

I tested positive for one copy of the V-Leiden gene in December 2005. I had previously had a blood clot in my left leg in 2003 which they treated and were considering dx of TIA's etc.

[santana8]

Thanks to everyone who responded last night!   took the advise and went to sleep.  This morning I put a call into the hematologist and my neuro.  The hematologist called me back himself and I got to ask him what was going on. He said that I tested positive for Factor V leiden, but only a mild defect in the gene. I asked if I had one copy or two and he said only one, and that it was mild. He said the only treatment he was going to put me on was one 81mg baby asprin a day. I started it tonight! He also said that he would explain the whole test on the 29th of April. I moved my appointment up some! I asked about the second possitive result, but he said he didn't see one  from scimming over the report, as he was in clinic while when he called me, and said that he would look it over more closley before my appointment. He didn't sound alarmed or worried about it, in fact he made it sound as though I only slightly had a defect in the gene that did not require any treatment other than the one baby asprin a day. My neuro called back and I told him and he immediately sent for the records from the hematologist. He said he would call me back. You would have thought that blood test result was gold the way he hurried off to look at it! He is all about test results. He told me that he didn't think it was necessary to be tested because he did not think it was a stroke and thought it would come back negative. I insisted on being tested, and now I kind of wish I didn't know!  Having one gene is suposed to not be as bad as two, but it is  still frightning! Now I have to keep ischemic attack in the picture for a little longer until they figure this all out! It just goes on and on! I have calmed down, but I am trying not to smoke and it is harder than I thought!

Santana

[nikki861]

Sending you peace and comfort. I know its hard to have this information and not really be able to decifer. Please find you happy place and relax your mind. (I need to pratice what I preach........LOL) Sending you happy thoughts and much love! We are here if you need to talk.

Beth

[monotreme]

The tests may have been for the FactorV Leiden gene.  Whether you have one or two genes for it makes a difference.  Also, most people with this gene may never get a clot.  It just means you have  a higher chance of getting a clot.  If you smoke or are on oral contraceptives you have a much higher chance of getting a clot too with this gene.

Most people with this gene suffer from clots in the leg or lung.  Clots in the coronary arteries happen less frequently.

From what I read on the internet. strokes do not seem to be a common occurrence with this gene.  Instead, it is the clots in the leg or lung.

So I kind of doubt that having vascular problems in the brain is directly related to the Factor V gene.  I just think that a radiologist brings this up in a report as to not be held responsible for diagnosing early MS vs arterial disease.  I think most radiologists pass the buck to the neuros.

Good Luck!!
Elaine

[sllowe]

Hey Santana -

Hang in there, your still here, and hopefully will have some answers soon, and in enough time to prevent further issues.

I'm going to the hematologist today, to hopefully rule out some things.  You've brought up an important topic with what is going on with you. You've been strong enough to pursue some gut instincts so far, so I know you can do this.

Wishing you well today, let us know what they say.
Be well,
SL

[LLWB]

I don't think the nurse should have told you over the phone. She should have said to call and talk to the dr directly, or at least made sure you wrote down which two tests you tested positive for. Seems like they tell us just enough to scare us to death, but not enough to really inform us properly. I hope you are able to relax, and let go of this for tonight. Please call and talk to the dr tomorrow, maybe he can make some time for you to go see him. With these positive results, May 7 seems like a long time to wait. Good luck, gentle hugs and prayers, keep us posted
Maggie

[santana8]

Thanks for being there! I think I will take your advice and go to sleep and call the doctor tomarrow. I will let you know what he says.

Thanks again
santana

[Fluffysmom]

I'm sorry that all I really know to tell you is to not panic until you talk with the doctor.  What was the nurse thinking?  I think you should call back tomorrow and ask to have the doctor call you as soon as possible.

Is there anything that you can do to distract yourself and stop the worry cycle?  I know, I'm a great one to talk, but I don't like to see you suffering and I know that if you can hold on, someone with more knowledge than me will come along and give you some intelligent advice, or you can go to sleep and talk to the doctor tomorrow so you have more answers than questions.

Your plethora of knowledge is leaving you open to considering too many possibilities. See if you can let it go for now.

I wish you peace,

Kathy