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Hello everyone,
I was reading through some of the posts in this forum, and I am compelled to share with you some information of a disorder that is known to cause TIA's and strokes and symptoms of MS. Lots of times it is totally missed or misdiagnosed as a Psychiatric conditon, MS or "nothing to worry about". Truth be known, it is VERY serious and can be treated!!!

Antiphospholipid Syndrome (APS) also known as Hughes Syndrome was first found in patients with Lupus in the 1980's by Dr. Graham Hughes- a Rheumatologist in London England. Later on, it was discovered that APS can occur WITHOUT LUPUS. They call it Primary APS when it occurs without Lupus, and secondary when it occurs with Lupus.

Dr. Hughes found that a lot of patients with symptoms of migraines, fetal loss, strokes, and vision loss etc had a blood disorder that was "sticky blood". Now, eventually they isolated blood tests to test someone with the symptoms and history of APS. First, let me review the symptoms with you.

Headache or migraine
visual problems
Clots e.g. deep vein thrombosis (‘DVT’)
Strokes or TIA's
Memory loss
Seizures, ‘multiple sclerosis’ features
In pregnancy, recurrent pregnancy loss
Skin - Cold Circulation

You don't have to have ALL of these symptoms, just some of them.

If you have had these symptoms, with NO explanation given to you, then its worth it to get checked out.

The Diagnosing Blood Tests:

I must add first of all that you can have APS without positive blood work! They call it sero-negative APS but it must be treated as aggressively as sero-positive. The reason they feel that people may slip through the blood work "loop hole" is that medical tests are not an exact science, there are people that do fit the clinical criteria but don't have the blood work positive at the time. Blood work can change from day to day, positive to negative!

The Blood tests:

Anti-cardiolipin Antibodies:

Sometimes referred to as Antiphospholipid. It is positive in 80% of cases
Higher Levels = Higher risk of Thrombosis

Lupus Anti-coagulant (LA):

Positive in 30-40% of cases
Cannot be used if patient is on warfarin

These tests should be done twice, within 6 weeks of each other if positive. If they are positive twice, and you have the symptoms then you probably have APS!

Treatment for APS:

The reason why the blood has a tendancy to clot is because it is "sticky". The goal of therapy is to thin the blood out. There are currently 3 main medications – aspirin, heparin or warfarin. Your doctor will decide which you need by how severe your symptoms are and have been in the past.

It really is worth getting tested for you guys. It can help so much when the blood is thinned. I have blurred and double vision, history of stroke, TIA's and I also have Lupus. SO for me its a double whammy. I will answer questions if you have them here in this forum if you like Hope this helps all of you who have suffered from TIA's and may have this Syndrome. Awareness is everything! Take care!

~Angelic

It's amazing how many symptoms I have that mimic MS but is really antiphospholipid antibody syndrome. And the best thing is, practically all of the symptoms disappear when treated with blood thinners. I'm living proof of it. Take the time to get tested, it can't hurt!
Hey california,

I don't believe that asprin will affect your test results. Like I said in the first post, APS can be "sero*negative" and APS could explain your symptoms. I hope that you feel better soon and that your doctor will treat you if you do indeed have this disorder. It would be interesting to try you on Warfarin to get your blood really thinned out to see how you do! I am no doctor, but I do understand what you are going through. These autoimmune things can be so difficult to diagnose. You take care of yourself :)

~Angelic
Hi! Never heard of this before. But I have a positive DX with MS using both brain and throraci spine MRIs, all positive. I was shocked!!! Unlike most MSers I had i thing go wrong and wham DX 1st time to the nuerologist. I thought He was nuts with he MS thing , so I took the MRI to prove that he was wrong and that I had a pinched nerve. Lots of scarring showed up on the MRIs. But I have also been lately diagnosed with hypotension (low blood pressure) becasue of my passing out/seizures. i took a tilt test for that and flunked it with flying colors; Gave the nurse/tech. a scare with a grand mal seizure. i've also had 1 misscarriAGE to my knowledge but 3 wonderful children after that were born healthy. I've had mild eye problems and lots of trouble with my neck and right shoulder (always tense !!). Oh and I have monthly headaches that nothing can relieve..3 days no matter what and then they'er gone. So could I have another thing going on? Or does MS and this disease you talk about and MS just mimic each other very very much!?
Hi angarugh! :)

MS and APS can go together in some people. The important thing is that you go and get the blood work done just to be sure. You do seem to have the symptoms of it that's for sure and the two can work together to make us live in misery! I have Lupus, APS and Sjogren's Syndrome (dry eye syndrome) so they all go together. Since MS is thought to be autoimmune, any other autoimmune problem can go with it for sure. I also have Type 1 Diabetes (the autoimmune type). Please go see your doctor and get tested, it would definitely explain some of your symptoms. The treatment is so good too.. getting your blood thinned out will alleviate the headaches and all the clotting related symptoms! It's a miracle thats for sure :) Take care!!

~Angelic
Angelic,

First, thank you. Second Lupus is a condition that my research shows IS due to an Omega 3 deficiency, as is MS. AND guess what? It also has a blood thinning property - and it does so by making the blood platelets LESS STICKY, smoother. Which sounds an awful lot like the Antiphospholipid Syndrome you spoke of, they've confirmed the use of Omega 3 therapy to treat many eye disorders including Sjogren's (another auto-immune disease, btw). And IMO that's a big "duh!" (if you are intimately familiar w/anatomy as docs are SUPPOSED to be, because the eye is COMPOSED of 80% Omega 3 fatty acids ... so a DEFICIENCY (80-99% of western culture depending upon the study you use is deficient) would mean LESS VISION! (eventually, anyway)

I'd SERIOUSLY look into Omega 3 and Antiphospholipid Syndrome as well as Omega 3 and Lupus. If you can't find anything try:

J Am Coll Nutr. 2002 Dec;21(6):495-505.
Omega-3 fatty acids in inflammation and autoimmune diseases.
Simopoulos AP.
The Center for Genetics, Nutrition and Health, Washington, DC 20009, USA.

Kidney Int. 1989 Oct;36(4):653-60. Related Articles, Links
Omega-3 fatty acid dietary supplementation in systemic lupus erythematosus.
Clark WF, Parbtani A, Huff MW, Reid B, Holub BJ, Falardeau P.
Department of Medicine, University of Western Ontario, London, Canada.

Effects of Dietary {omega}-3 and {omega}-6 Lipids and Vitamin E on Serum Cytokines, Lipid Mediators and Anti-DNA Antibodies in a Mouse Model for Rheumatoid Arthritis

Venkatraman, J. T., Chu, W.-c. (1999). Effects of Dietary {omega}-3 and {omega}-6 Lipids and Vitamin E on Serum Cytokines, Lipid Mediators and Anti-DNA Antibodies in a Mouse Model for Rheumatoid Arthritis. J Am Coll Nutr 18: 602-613

Nutrient intake in women with primary and secondary Sjögren's syndrome

J M Cermak1,2,3,b, A S Papas4,b, R M Sullivan1,b, M R Dana1,2,3,b and D A Sullivan1,3,a,b

And that's just one file I have.

I also didn't write this next paragraph, but they give permission to share w/friends/family.

OMEGA-3 FATTY ACIDS
Reported to reduce cholesterol, blood pressure, and be beneficial in autoimmune diseases. A study has shown that omega-3 fatty acids have an inhibitory effect on mammary tumors. Another study has shown that women with the highest consumption of fish tend to have the lowest incidence of breast cancer. A new study finds that eating fish once a month or more can reduce the risk of ischemic stroke in men. (Journal of The American Medical Association, 12-25-02--Vol 288, No.24 - article abstract). The data for use by diabetics is conflicting and further research is needed. Another study has shown that a diet low in omega-3 and zinc promotes enlargement of the prostate gland. This gland produces prostaglandins and tries to compensate for this deficiency by enlarging. This enlargement can be reduced by adding omega-3 and zinc picolinate to the diet. Sources for omega-3 are salmon, mackerel, albacore tuna, cod, herring, halibut, sardines, flaxseed oil, green vegetables and some nuts. Fifty percent of the total dietary polyunsaturated fat should be omega-3. Recent animal studies show that omega-3 fat aids bone growth. If the same hold true for humans it would prevent osteoporosis. Animal studies also show that omega-3 protects the body against attack by its own immune system in autoimmune diseases such as rheumatoid arthritis and lupus erythematosus. Since omega-3 fatty acids are blood thinners supplements should not be taken by those on blood thinners. In this instance whole fish would be better than the oil capsules. See flaxseed oil.

Have fun, if you want to discuss anything or have Q's just ask away!

Good luck,
Kim
Hi Kim!

Thanks so much for that info! My doctor is reluctant to try things with me because i have extensive diseases going on. I have Lupus, Sjogren's Syndrome, Antiphospholipid syndrome, Pernicious Anemia, Type 1 Diabetes, Raynauds Phenomenon, and a chronic mycoplasma infection. I have been concentrating a lot of effort on APS and also the Mycoplasma and its effect on people with "unknown" disease processes that are autoimmune. They are finding more and more that Mycoplasma is a precursor to Lupus, Sjogren's Syndrome, Chronic Fatigue, Fibromyalgia etc. Very interesting info though!! Thanks so much, I will look into it for sure :)

~Angelic
AngelicBrat,

Does APS cause MBP to show in the spinal tap? Or other kinds of myeline proteins?

Also I have tested negative for Sjorne's syndrome, today I'm going to get the authorization for APS testing
Enas,
I had asked Angelicbrat your question and I apologize for not getting back to you as quickly as I should have. This is what she had told me:

"I believe that the myelin based protein is usually seen in MS patients, but APS patients CAN have them too! Since both are autoimmune in nature, the person can have both since Lupus and APS are terrific mimikers! Tell this person to get tested for APS, because they could still have MS and APS together."

I'd like to add that it is possible, but unlikely to have both MS and APS together. Angelicbrat is the knowledgeable one about APS, maybe if you list your symptoms, we can get a better idea of what's going on. Shari
Sampy123

OK: Woke up on October 5 to be exact with a leather glove feeling in my hand, the same with my leg and thigh on the left side (had gait disturbance with that). And this is the only symptom I had, none of the pins and needles I hear everyone talk about. I had an evoked potential which came back negative for neuritis and a week later I had an extremely bright spot in the visual field of my right eye with no pain (still has that). Heat doesn't bother my eyes or make it worst, as a matter of fact if the water is not scolding I can't take a shower.

I was put on IV Solmedrol and that didn't help either

Prior to that, around the end of July, I had alopecia which lasted for about 2 months, I had strange looking spots over my arms only. They looked like I have poked my self with a needle in various areas but not enough to cause actual bleeding, rather VERY small spots of red, I also had and stil have over production of eye gunk, Also at that time, I had two extreme episodes of migraines and vomiting that rendered me bedbound for over 8 hours each

I am extremely sensitive to cold but when I go to bed at night I turn into a furnace sweating buckets (I actually have to change sheets) I was tested for the thyroid function and nothing was found to be wrong. Tested for ANA Ab but the test said negaive (no actual ratio was presented with the results)
Enas,
I'll forward your post onto Angelicbrat and see what she thinks. I'll get back to you.
Hi Enas!

I have read a lot about you thanks to Shari :) I have done some research regarding the myelin based proteins and have come up with what I said before. Since Lupus and APS are autoimmune, they are terrific mimikers. APS can be a tough one, but you do need the blood work done since it seems that you have the symptoms! If you had obligonal bands in your CSF then I would be more suspicious of MS, but since its a myelin based protein then I would be tempted to lean towards APS. Don't get me wrong here, you could have MS but this sounds more like APS to me! I would get back to the doctor and get that blood work done just to see what it shows.

The spots on your arms could be "petichea". That is something that can be caused by APS. Do you have a webbed pattern on your skin or does it turn blue? When you say that you are sensitive to the cold, what happens to you when its cold? Sorry for all the questions, I just want to help get to the bottom of this for you :) Have you had any other weird things positive over the years? Like blood work, urine workups or any other tests? Thanks!

~Angelic
Good Morning AngelicBrat

Thank you for digging into this (Shari too :) ). They could not test for oligo bands (something about the sample not being adequate).

Before I type anything else :), I'll let you know that I have ordered the Copaxone but it is sitting in my fridge, hence I'm not in denial of the possibility of having the disease, but I would really like to get a more definite answer from the doctors, I really do not want poison in my body unless I have to. I acted this fast (it's hasn't been 3 months since this thing started because I know that the earlier one starts treatment the better)

Other prior sysmptoms over the years? Really none what so ever I am twisting the cells out of my brain trying to remember. I do beleive that at one point in August there was slight twitching under my left eye, also the strange chipping and breaking of my nails when I have always had strong nails. I do know that in 2000 I had an enlarged spleen that was never followed up upon. I also have a cystic body, I develop cysts that have to be surgically removed. I have to state that since July up to that day on October 5, I have been extremely stressed due to personal and work issues.

The red spots I speak of did not turn blue, and no web formation. They were just spread from the wrist up to arm (ends righ before the shoulder)

The cold is a killer for me, I am always cold during the day, and shivering is common for me, only at night when I sleep I turn into a highly efficient furnace.

Here are the tests (I just had a sample drawn yesterday to test for APS, I requested they do an anti-cardiolipin antibody and a Lupus anticoagulant my primary care physician did not know what I was talking about ofcourse so I'm hoping he is oredering the correct tests):
These are actually from the CSF sample
WBC: 6/mcL
RBC: 10/ mcL
Neutrophils 4%
Lymphocytes 96%
Monocytes 0%
Esinophils 0%
Protein total 19 MG/DL
Glucose 68 MG/DL
MBP 6.2

Blood:
B12 1440 pg/mL
Also the ANA came back negative

I'm going bananas :) Thank you so much for following up I really appreacite all the help I can get.


Have a Happy New Year Everyone
Hi Jules,

It isn't permitted to email other users unfortunately :( If you have questions you can post them here for me.. I will be able to help you :) Is everything okay hon??

~Angelic
Oh crud!!

I am SO sorry Ena but I missed your post. I will review your results step by step so you don't get confused here:

WBC: 6/mcL [B]<--- This is slightly elevated[/B]
RBC: 10/ mcL [B] <-- It is abnormal to have ANY cells of this kind[/B]
Neutrophils 4% [B]<---None should be seen[/B]
Lymphocytes 96% [B]<--- this is VERY high, indicating inflammation in the brain/spinal cord[/B]
Monocytes 0% <--- This is normal
Esinophils 0% <--- This is normal
Protein total 19 MG/DL <--- This is normal
Glucose 68 MG/DL <---This is normal too
MBP 6.2 [B]<--- This indicates a CHRONIC breakdown of your myelin. It can be indicated in Encephalitis (inflammation of the brain), central nervous system trauma ex/ from Rheumatoid Arthritis or a combo of Lupus AND Rheumatoid Arthritis or other inflammatory problems[/B]

This is like looking in a mirror for me! I had a HUGE amount of Lymph cells in my CSF too. It can indicate Central Nervous System involvement in Lupus and/or APS. So I think we are on the right track here! Hope this helps you.. we are here for ya!!

Moderator 2- Thank you for that, I would never post my email address. Good eye, I was just emailing mod 1 :)

~Angelic
AngelicBrat,

Thank you for taking the time, goodness this forum gives me much more than my own 6 doctors combined! Hmmm, and I was told that except for the myelin everything else looks normal!

Alright, I've had the test done for the anticardiolipin and apparently all of the IG were lower than the normal range, unfortunately I do not have them on me to post but will tomorrow, so I guess my questions are:
What is the presence of the RBC in the spinal fluid be indicative of, if they're not supposed to be there??
What does it mean to have a much lower IGM, IGA (there were three of them I'm not quite sure as to the names) counts?

By the way, just to be on the safe side I have asked my doctor to give me Copaxone and I started taking it, since early therapy is the best course, and even though I know it is not wise to use something that I may not need I don't want to regret later.

Thank you
Enas
AngelicBrat, I wanted to thank you also for taking the time to write all of this for us. My wife and I are pretty sure she hasn't been tested for APS. The doctors at the hospital are pretty sure she has had TIA's. The entire left side of her body has went completely knumb and nothing showed up on the test. She's had that along with some memory loss, (not to mention that she gets confused easily now), severe headache's/migraines, etc... She is on the depo shot, so she hasn't been pregnant.

Anyways, thank you again for the time you've spent here.
Buuuuuuuuuuuuuuuuuuuuuump!

~Angelic
[QUOTE=AngelicBrat]Buuuuuuuuuuuuuuuuuuuuuump!

~Angelic[/QUOTE]

Bumping this up for Kyle to read
This thread is a few years old, but I just came across it. Angelica I want to thank you. I found out I have the Anticardilipin antibody along with MTHF mutation gene and Factor 7 definancy. I found this all out when I had my first miscarriage 8 years ago. I have had the migranes (which we couldn't find out why I was having them) I get weak at times, I always have muscles aches. When I was pregnant after 4 miscarriages, I had to be on Lovonox shots twice a day. My son is now 2 1/2 years old. I took a turn for the worse back in November of 2007 when they found a PE (pulmonary embolism) (sp) in my lung. I was in the hospital for a week. I am now on Coumadin for a year. As I was reading your post, I never thought that this could relate to MS. I am ALWAYS interested in learning more about these antibodies and sympotms.

Thanks
Shay
Hello Angelic,

This is my first time on Healthboards. I was glad to see your post regarding the fact that tests don't always have to be positive to still be really affected by APS. I was diagnosed when pregnant years ago with positive ANA and Anticardiolipin and because of having several miscarriages. Since then the few tests I have had done have been negative. I now have been having very achy legs and multiple bruises that seem to just "appear". I have also been fatigued for many (over 20) years, which insomnia doesn't help. Just recently I've been wondering if I could be a candidate for MS, since my muscles and heart feel very weak at times. No migraines, just brain fog and head pressure with a tingling sensation. What are your TIAs like? My general doc recently told me I have a prolapsed mitral valve, but he said it was not serious and no regurgitation. Some days I seem OK and can function. Others it is a struggle. Do you have any advice or suggestions? I know you are not a doctor, but you do seem very knowlegable in these areas. It's hard to get a lot of info out of any doctor appointments. The last time I had one, he said just "I don't know". I do not have health insurance, and the doctors where I am seem to all be complacent. I'm also low thyroid and on medication for that, which is another common complaint with APS. At any rate, I would appreciate any feedback you can offer!

Best Regards,

Lalynn

[QUOTE=AngelicBrat;389452]Hello everyone,
I was reading through some of the posts in this forum, and I am compelled to share with you some information of a disorder that is known to cause TIA's and strokes and symptoms of MS. Lots of times it is totally missed or misdiagnosed as a Psychiatric conditon, MS or "nothing to worry about". Truth be known, it is VERY serious and can be treated!!!

Antiphospholipid Syndrome (APS) also known as Hughes Syndrome was first found in patients with Lupus in the 1980's by Dr. Graham Hughes- a Rheumatologist in London England. Later on, it was discovered that APS can occur WITHOUT LUPUS. They call it Primary APS when it occurs without Lupus, and secondary when it occurs with Lupus.

Dr. Hughes found that a lot of patients with symptoms of migraines, fetal loss, strokes, and vision loss etc had a blood disorder that was "sticky blood". Now, eventually they isolated blood tests to test someone with the symptoms and history of APS. First, let me review the symptoms with you.

Headache or migraine
visual problems
Clots e.g. deep vein thrombosis (‘DVT’)
Strokes or TIA's
Memory loss
Seizures, ‘multiple sclerosis’ features
In pregnancy, recurrent pregnancy loss
Skin - Cold Circulation

You don't have to have ALL of these symptoms, just some of them.

If you have had these symptoms, with NO explanation given to you, then its worth it to get checked out.

The Diagnosing Blood Tests:

I must add first of all that you can have APS without positive blood work! They call it sero-negative APS but it must be treated as aggressively as sero-positive. The reason they feel that people may slip through the blood work "loop hole" is that medical tests are not an exact science, there are people that do fit the clinical criteria but don't have the blood work positive at the time. Blood work can change from day to day, positive to negative!

The Blood tests:

Anti-cardiolipin Antibodies:

Sometimes referred to as Antiphospholipid. It is positive in 80% of cases
Higher Levels = Higher risk of Thrombosis

Lupus Anti-coagulant (LA):

Positive in 30-40% of cases
Cannot be used if patient is on warfarin

These tests should be done twice, within 6 weeks of each other if positive. If they are positive twice, and you have the symptoms then you probably have APS!

Treatment for APS:

The reason why the blood has a tendancy to clot is because it is "sticky". The goal of therapy is to thin the blood out. There are currently 3 main medications – aspirin, heparin or warfarin. Your doctor will decide which you need by how severe your symptoms are and have been in the past.

It really is worth getting tested for you guys. It can help so much when the blood is thinned. I have blurred and double vision, history of stroke, TIA's and I also have Lupus. SO for me its a double whammy. I will answer questions if you have them here in this forum if you like Hope this helps all of you who have suffered from TIA's and may have this Syndrome. Awareness is everything! Take care!

~Angelic[/QUOTE]





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