Ruling out a stroke

My 29 year old first cousin suddenley had two massive strokes two days ago. She was previously healthy as far as we know. She was taken off life support today and passed shortly after. The strokes done too much damage to the brain and there was no chance for recovery. Most of  you have probally read my post and know that I have been stuck between two dx's ADEM and MS for two years now, with no further lesions showing up on MRI. I had ask my neuro when he first found the lesions on my brain if I could have had a stroke. He said he did't see anything indicating that I had. A few visits ago when he was talking about the fact that he would have expected to see new lesions on MRI in two   years, but that it still could end up being MS. HE then said that this may  have even been vascular. After this happened to my cousin today, I have been freaking out wondering if i could have had a stroke back two  years ago when this all started. Can they tell the difference in white matter lesions and a stroke? He said he didn't see evidence of a stroke, so why,  after he was having trouble distinguishing between ADEM and MS , did he jump back to it may have been vascular? I know I am frightened by the sudden death of my cousin, but I'm afraid that they may not know the difference between the two. Does anyone know if they are different on MRI?

[essdipity]

Hi again. I can sure understand your concern, and I'm very sorry about your cousin.

Quix is the most qualified one to answer your question, but I can say a few general things. Many radiologists will conclude that an abnormal MRI is from vascular stuff merely based on your age. If you are older than about 45, it seems they want to go that route unless there is compelling reason to think otherwise. Not that that's right in every case at all.

There are specific places in the brain where MS lesions are MORE LIKELY to appear, and there are specific shapes and sizes that MS lesions are MORE LIKELY to have. This is based merely on averages, and is not true for every patient.

Don't let your doctor dither about this forever. Why not at least have the MRI films reviewed by someone else? Or two. A neuro-radiologist should be better at this than a regular radiologist, and an MS specialist better than a general neuro.

Overall, the MRI is just one part of the clinical picture. Evoked potentials, LP and rule-out blood work are also important. But a thorough neuro exam is also crucial. If everything you present with, including sensory symptoms not often seen in stroke, seem to indicate MS, then if I were you I'd quickly find a better doctor. Your cousin's stroke probably has nothing to do with you.

ess

[santana8]

Hi! Thanks for listening to my concerns, did I mention that I have a panic disorder, Thats why I am freaking out. My only brother died 16 years ago of a massive heart attack at age 31. He had a blood clot that went to his heart. And now my cousin had two blood clots that went to her brain. They had put her on some kind of new birth control about six weeks ago and the doctors think it may be related to the stroke. I have had six MRI's , five with contrast. All five follow up MRI's show no new lesions. Just the same ones( 6-8) in the white matter, neuro says they are all of the same age and apear to have happened at the same time, which goes  along with the only one clinical attack that I had two years ago. The trouble is MS and ADEM are strikingly similar both clinically and radiologically. Sometimes only distinguishable by evidence of a second attack or new lesions in space and time.I haven't had either. Adem  is a monophasic illness, meaning one time attack. I had lots of blood work, and I know it was to check for lupus, Lyme, vitamin B defic.  Don't know what else was checked for in blood test. Had LP, which was negative for all including neg for O banding. Had polliomerce chain reaction to check for viruses, PML , all negative Had VEP, showed slowing. The two test that were positive, MRI and VEP can be positive in both ADEM and in MS. I put a call in today to my neuro. When he calls back I am going to ask him to send me to a vascular specialist to be checked to get some peace of mind. I am just 40 , and with all of this happening to young people in my family, I need to be sure.

[essdipity]

Good, I'm glad you're making decisions.

MS/ADEM is one kind of problem, and strokes something else entirely. So you need to eliminate or confirm the stroke possibility. One thing to consider is your overall health. How is your blood pressure? How is your cholesterol? Your PCP can refer you for a carotid ultrasound even before you see a vascular specialist, who will just order the same thing anyway. Have all this checked out, but don't panic. And keep letting us know how you're doing.

ess

[santana8]

I just got a physical exam six months ago. Colesterol- 205, Triglicerites- good, blood sugar- good, everything good on blood test. Had female exam too- all normal. Is a carotid-ultrasound one that they do of your heart to check for evidence of damage to the heart? I had an ecko-cardiogram of the heart about two and a half years ago right before all this happend. It was normal.  Primary care doctor  listened to heart and lungs in physical six months ago- said sounds good. Is a ecko-cardiogram the same thing as a carotid- ultrasound?

[essdipity]

No, it's quite different. Your carotid arteries are in your neck. An ultasound machine is used to watch the pumping of blood through them. You can actually see this depicted and hear all the blooping noises.

Clogged carotid arteries are a major cause of stroke, so this is an important rule-out test. It's totally painless and takes maybe 20 or 30 minutes.

ess

[essdipity]

It doesn't sound like you are a candidate for a stroke, though because of your family history this should of course be checked.

Here's a good explanation of carotids and stroke:

http://www.clevelandclinic.org/health/health-info/docs/1400/1482.asp?index=6434

ess

[santana8]

Thanks, I will let  you know what the test say.

[santana8]

Hi Ess, just wanted to let you know that I talked to my neuro today to find out if he had checked me for vascular problems in my bloodwork. He said that he had not . I told him of my concerns and family risk factors. He said that He did not see evidence of a stroke . I reminded him that he had told me that this might end up being vascular. He said that nothing showed up in the main arteries and it would have had to have been in the smaller viens in the tissue, but he really didn't think it appeared to be a stroke. I said then what does it look like it was. He said it  looks like  ADEM   and because you are recovering with no further signs it goes along with this. He didn't mention MS this time and I've noticed that he hasn't been looking in that direction lately. DO you think that he is starting to lean toward ADEM? Anyway he said that he would order some bloodwork to check my blood for clotting and vascular signs, but that he didn't think anything would show up positive. But I told him I wanted to be checked for it anyway to be sure . He said ok he would have his nurse set  up the bloodwork, to give me some peace of mind and to be sure to rule it out. I can't wait to get this done so I can stop worrying about this so much. I will let you know how they turn out.

santana8

[Quixotic1]

I am so sorry to hear of the loss of your cousin and your brother.  And I certainly understand why you feel on the verge of a panic attack.  Part of the diagnosis of MS is excluding all other reasonable possibilities for the problems.  There is a strong mimic of MS called Hughes Syndrome.  Hughes Syndrome is a problem with the blood clotting too easily and is genetic (I think).  There are several variations of it.  It is a major cause of heart attacks and strokes too early in life.  

In the workup for MS all people should be screened for problems with "sticky blood."  The tests include Antiphospholipid antibody, Anti-Cardiolipin antibody and several others.

I suggest that you google Hughes Syndrome and then ask you doctor about it.  In one large study (by Hughes) in Canada, a good number of people in an MS Clinic actually had Hughes Syndrome instead of MS.

So these tests should be among the ones your doctor is ordering.  I assume your docotr knows about your brother and your cousin?

Quix

[kitten o]

I AM VERY SORRY FOR YOUR COUSIN.
IT IS NOT EASY TO HANDLE A SUDDEN
PASSING. GOD BLESS YOU AND YOUR
FAMILY.
KITT

[Heather3418]

I am so sorry to hear about your cousin.  What a tragedy.  You have my deepest sympathy's.  

Be strong and please take Quix's advice...

Big Hugs,
Heather

[santana8]

My brother died 16 years ago of a  massive  heart attack at 31.  He had jumped off a big truck that had the brakes gone out and landed hard on his feet down a  bank. He died of a  bloodclot that went to the heart. His son who is now in his thirties had  began to have  chest pain and was hospitalized. They found out that he had some genetic disorder that is passed to men in the family most. His blood was too thick and was forming clots. They put him on cumoden( blood thinners ). His  doctor in Indiana said that more than likely my brother (his dad ) had this too, but just didn't know it. We had an autopsy done on my brother that showed he had corinary artery disease and that he had a clot that traveled to the heart. He was overwieght and smoked for 20 years. I have had a few uncles who have had blood clots. My cousin was the first female to have  blood clots. The neurologist and cardiologist that treated her said they strongly suspected the different birth control medicine that they had recently switched her to six weeks prior to the strokes. I think it was one of those new ones out now that have the stroke warning.  She  was basically  brain dead so the doctors told the family that there was no chance for recovery and sugested that she be taken off the life support. She had two young girls 8 and 6. There is some good that came out of this. Her husband and dad agreed to donate her organs.  A nine year old little girl who  was dying from a  failing heart received her heart yesterday and is doing good. Nine people in all  received organs from her. I wasn't too close to her as she was raised in  chicago and me in kentucky, but I am glad that some good came out of such a tragedy!  My neuro doesn't think that my brain lesions are from a stroke. HE says that it is definatley demyelination in the white matter and seems to being swaying toward that I had ADEM. He agreed to do this blood  work because I   requested it and almost insisted. I don't think I have a clotting problem as I bleed a lot  even from a small nick or cut. And most of my life have had borderline anemia. But I need to make sure. Thank you Quix for the name of the test, I will make sure that he does these. I'll let  you all know after I have them done about the results.

thanks for all of your condolences and thoughts

santana8