This is my journey from the very first symptoms of Multiple Sclerosis; 17 years of progressive disability, through the search for a cure to the angioplasty procedure for Chronic Cerebro-Spinal Venous Insufficiency that pulled me out of a wheelchair and into a second chance for life.There is no cure...but we have for the first time a chance for an enhanced quality of life.
Thursday, July 5, 2012
Hughes Syndrome diagnosed by a simple blood test remains dangerously under-diagnosed
Antiphospholipid syndrome is an autoimmune condition (APS or APLS ) or Hughes syndrome, also known as “Sticky blood” is commonly misdiagnosed as MS. The person's immune system produces antibodies which attack proteins and fats in the blood. Some people with Hughes develop a syndrome which is very similar to multiple sclerosis where they have numbness or pins and needles, double vision or loss of part of the field of vision, and have difficulty walking. One of the main alternative diagnoses in patients with Hughes syndrome is multiple sclerosis.
People with it have an increased tendency to form clots in blood vessels; any blood vessel can be affected including the veins and the arteries. Deep Vein Thrombosis like “economy class syndrome” is obvious. It is common in people who sit for long periods of time in one position .Sitting in front of the computer or taking long flights are two good examples. Clots which occur in internal organs, the condition is more difficult to diagnose. It is possible to have the antibody (the sticky blood ‘tendency’) without any noticeable symptoms.
Headaches or migraines sometimes start in teenagers .The headaches may disappear in the 20’s and return and start again 10 or 20 years later. This is a most important feature of Hughes Syndrome, and a symptom which sometimes improves dramatically when treatment is started. Flashing lights is common in these headaches.
The brain is sensitive to "sticky blood" which can affect oxygen supply which causes balnce problems. Many patients feel giddy or slightly drunk.
Memory loss or cog fog occurs with hypoxia (oxygen deprivation). It can feel like Alzheimer’s disease. The person may forget the names of family members, friends, appointments, etc. Speech can sound slurred. Blood thinning can dramatically resolve the cognitive problems of Hughes syndrome.
In addition to the flashing lights and zigzag patterns which can accompany headaches and migraines, the person with Hughes Syndrome can experience double vision or sudden visual loss. This can be caused by the brain reacting to disturbances in its supply of blood or by the veins and arteries in the eye being affected. Poor circulation can make the skin cold to the touch and cause ulcers and “corned beef” looking discoloration.DVT’s can occur anywhere in the body at any time. Birth control pills can exacerbate the problem.
Hughes Syndrome can lead to heart attacks and heart valve problems that can mimic bacterial endocarditis, and can create clots in the upper chambers of the heart. Up to 20% of young people (under 45) who have a heart attack have antiphospholipid antibodies.
1 in 5 “young” strokes under the age of 45 are associated with Hughes Syndrome. These are preventable with a simple blood test to confirm Hughes Syndrome.
Hughes Syndrome can affect the blood supply to the intestines, causing abdominal pain, fever and blood in the stool. Antiphospholipid antibodies can also cause Budd-Chiari syndrome, in which a blood clot prevents blood from flowing out of the liver and the person may then experience nausea, vomiting, jaundice dark urine and the swelling of the abdomen.
1 in 5 miscarriages are caused by Hughes Syndrome. Late pregnancy loss is very strongly associated with Hughes Syndrome as is pre-eclampsia, placental abruption and intra-uterine growth restriction. The sad part is that it is preventable with low dose aspirin or heparin.
The main symptoms of Hughes Syndrome can include any of the following:
Multiple Sclerosis-like symptoms
Headache or migraine
Thrombosis – DVTs
Aches and pains
low platelets counts
raised blood pressure
Dry eyes (Sjogrens’s Syndrome)
shortness of breath
terrible cramps of the stomach that develop about an hour after eating