Mammananny's Blog   My Journey through Multiple Sclerosis,Liberation and Beyond!

That’s how I felt a few days ago when I met with a room filled with lab coats and a dozen or so lay persons. We tried to appear professional, informed and knowledgeable. I tried to make light conversation with the young woman next to me hoping she would calm down and lose the “deer in the headlight” aura she projected. I was under the impression that there would be two neurologists, an IR and a handful of lab rats. Instead there were four neurologists, a hematologist, two IR’s, the director of the local NMSS, and an assortment of other doctors in their respective specialties.

Due to the number of people in the area requesting information about CCSVI and “the Liberation Procedure” (their term, not mine), this eclectic group was put together to gain insight. Four of us were part of the same study who all had well documented diagnosis of Multiple Sclerosis and unbroken chains of medical records. I had been diagnosed earlier than the other three. I was also born well before the others. I have a recording of the entire proceedings but I wanted to share a couple of observations. After a brief presentation by DRs. James and Montalbano, one of the neurologists began to reduce the entire venous connection to MS as a pipe dream not based in any logical scientific study. I began to wonder why I was there. Apparently so did one of the doctors because he said, “your presence is not necessary as we have copies of your records, written by other physicians. We cannot expect “patients “to understand medical terminology.” The silence was deafening. After about an hour, in reality about 15 seconds, I said, “If I may, I would be most willing to explain why patients are important in making their healthcare decisions in concert with their own physicians. Have you read our records, sir?”  The hematologist of all people said she would be interested in asking some questions. Finally we were getting somewhere as all of us answered their concerns very well in my opinion.

After about 15 minutes, Dr. Ego felt he could conclude the session by dazzling us with his superior knowledge of Multiple Sclerosis. I have to admit it was impressive, though it didn’t appear that the other doctors understood half of what he said. Finally I said, “How can you discount what you see before you? Two of us are considered to have SPMS. Neither of us use a wheelchair or cane. You can see the remarkable difference in my records of two years ago and today, including all of my MRI’s and reports. Aren’t you even curious?” Someone said, “Would you submit to a neurological exam?” I agreed and she asked me to come up front. I was standing in the front of all the brass when I realized that the neurologist who wanted to examine me was one of my old neurologists. I had not seen her for at least 8 years. She was quite thorough, even having me take off my shoes and glasses. She never smiled. I was getting nervous. When she was finished, they all agreed that I “appeared” to have no clinical signs of MS. Finally Dr. Rivers said, ” I was this woman’s neurologist many years ago. She had RRMS. I read her chart and wanted to be here to see for myself. She went on to explain the MS symptoms I had as her patient. When there was an objection, she said,” I have never seen this level of improvement in an MS patient. After reading the doctor notes of successive physicians, and her severe level of disability two years ago, I concede that this dimension into the causal factors of MS demands more consideration.”

I went back to my seat, without my shoes. I would have to do something stupid! All in all, I think some progress was made. I mentioned Dr. Hubbard and his willingness to speak with them. I left them with contact information and website links. The young woman next to me ran and got my shoes.

A high percentage of people who have suffered from oxygen deprivation in chronic hypoxia are prone to develop depression at some future point.

The normal level of blood oxygen fluctuates between 95% to 100%, for any normal adult. Smokers can hover around 92%. Anything less than 85% to 90% means that you need to wear an oxygen mask.

In cerebral hypoxia, sometimes only the oxygen supply is interrupted. This can be caused by:

• Breathing in smoke (smoke inhalation), such as during a fire
• Carbon monoxide poisoning
• Chronic Cerebro-Spinal Venous Insufficiency
• Choking
• Diseases that prevent movement (paralysis) of the breathing muscles, such as  amyotrophic lateral sclerosis (ALS)
• High altitudes
• Pressure on (compression) the windpipe (trachea)
• Strangulation

In other cases, both oxygen and nutrient supply are stopped, caused by:

• Cardiac arrest (when the heart stops pumping)
• Cardiac arrhythmia
• Complications of general anesthesia
• Drowning
• Drug overdose
• Injuries to a newborn that occurred before, during, or soon after birth
• Stroke
• Very low blood pressure( Hypotension)

Brain cells are extremely sensitive to a lack of oxygen. Some brain cells start dying less than 5 minutes after their oxygen supply disappears. As a result, brain hypoxia can rapidly cause severe brain damage or death.

• Change in attention (inattentiveness)
• Poor judgment
• Uncoordinated movement

Symptoms of severe cerebral hypoxia include:

• Complete unawareness and unresponsiveness (coma)
• No breathing
• No response of the pupils of the eye to light

Chronic hypoxia,

• clinical depression

• Restlessness
• Anxiety
• Disorientation,
• confusion,
•  lassitude
• listlessness
• Headaches
• confusion
• short term memory loss

• persistent mental and physical fatigue
• sluggish mental responses
• loss of ability to perform physical tasks
• pulmonary hypertension (PH)
• right heart failure
• Polycythemia (High Red Blood Cell Count)
• interferes with endothelium-derived nitric oxide-dependent vasodilation
• Tachycardia (increased rate of heartbeats, more than 100 per min)

Certainly, if you have Multiple Sclerosis there is a good chance that you have experienced the pain of those days when the world looks bleak and you lack motivation and hope.   Sometimes this can turn into depression.

Our “progressive” society still attaches a stigma to people who suffer mental health issues. In truth, diabetes, cardiac problems, or any other major medical concern is caused by the same factors as major depressive disorder.

No laboratory test has been found to be diagnostic of this disorder. Sleep EEG abnormalities are evident in 40%-60% of outpatients and in up to 90% of inpatients with this disorder.

1. Major Depressive disorder can be hereditary and it is not uncommon for people with it having family members with major depression or bi-polar disorder. It is not caused by trauma, poor self esteem, lack of character or self perceived weakness. It took me many years to realize this in my own life. Patients who have a chronic disease can develop a reactive depression, but in the MS population the incidence is much greater than what you would expect, comparing it with other chronic-disease processes. It is a manifestation of the disease due to MS activity, which actually causes a chemical change that leads to depression. Clinical depression goes beyond a few bad days.  Technically defined one must have a number of these symptoms:

   -depressed (or irritable) mood most of the day nearly every day
   - diminished interest in pleasure and activities
   - significant weight loss or gain
   -  insomnia or hypersomnia
   - agitation or, alternately, sluggishness or complaints of fatigue
   -  feelings of worthlessness or excessive or inappropriate guilt
   - diminished ability to think, or an inability to make decisions
   - recurrent thoughts of death or interest in/plans for suicide

1. Stress is a major factor in depression. The stress of dealing with a diagnosis of a chronic disease and the possibility of disability can bring on depression.
2. The disease process of MS may cause depression. If MS damages areas of the brain that are involved in emotional expression and control, a variety of behavioral changes can result, including depression.
3. Depression may also be associated with MS-related changes that occur in the neuro endocrine or immunesystems.
4. .Depression can also be a side effect of some medications.

While MS is not depression, its consequences can certainly make people depressed. Depression can result from the personal and social losses that come with MS symptoms. Weakness, clumsiness, reduced mobility, restricted movement — all these things can cause depression. We value our capacity to move with energy and ease very highly.  Sometimes these changes cause other losses, like jobs, well-loved activities, hobbies, even friends, companions, or spouses who turn out to be less loyal and caring then we had hoped. Losing any one of these things can trigger depressed days that can escalate into a major depression. Even the threat of these kinds of losses is enough to depress many of the newly diagnosed.

PwMS often go through a period of grieving. They may grieve the losses they experience due to MS, such as walking or working. This mourning may look like depression. However, grief eventually goes away on its own.

Clinical depression is a serious condition that can last from at least two weeks to several months. It produces flare-ups known as “episodes.”

Symptoms of depression appear to be more common in people living with MS. Symptoms of depression may also be associated with some MS treatments. If you experience symptoms of depression or have thoughts of death or suicide, contact your doctor immediately.

Symptoms of a major depressive episode:

1. Sadness
2. Loss of interest or pleasure in everyday activities
3. Loss of or increase in appetite
4. Insomnia or sleeping too much
5. Agitation or slowing in behavior
6. Fatigue (feeling of tiredness)
7. Feelings of worthlessness or guilt
8. Problems with thinking or concentration
9. Ongoing thoughts of death or suicide

Depression does not mean that you are “weak, crazy, or unworthy” You should not feel ashamed about being depressed or feel the need to hide it. You cannot control or prevent depression, but it is very treatable.

1. Talk openly about your feelings so those close to you can learn how best to support you.
2. Allow for two-way communication. Regular family meetings are a good outlet for communication.
3. Reach out to a friend if you need help.
4. Spend time with others.
5. Connect with other PwMS/CCSVI
6. Get involved in the community.
7. Find time to relax.
8. Exercise
9. Be careful of eating comfort foods. They add empty calories, cause unneeded weight gain. If you are like me, comfort foods always include sugar and carbs which serve to worsen our vascular condition.
10. Laugh, and surround yourself with others who do. Facebook may not be the only place you need to weed through your “friend” list. Avoid toxic family members as much as possible. If your spouse, parent or other loved ones aren’t helpful in this area, educate them or make some hard choices.
11. Try to focus on the positive

Medication for depression in PwMS according to one study may not be as effective as it is in other chronic illnesses. Serotonin reuptake inhibitors like Zoloft, Paxil, and Prozac may help some. Older tricylic antidepressants like Imiprimine and Amitriptyline sometimes work better for those who don’t tolerate the others well. The drug companies refer to these as “dirty drugs” because they are no longer the profitable meds they once were. An added benefit for them is they often help with pain management; another by-product of serious depression. A sober talk with your doctor is crucial to find what combinations of treatment options will work best for you. Drugs are not a panacea for depression and are probably prescribed far too often for less serious forms of depression. There is no “happy pill”. However, there is no more reason to avoid them than their is avoiding insulin if you are diabetic. (For example, I am diabetic and also suffer from major depressive disorder.)

Episodes of this disorder often follow a severe psychosocial stressor, such as the death of a loved one or divorce. Stressors may play a more significant role in the precipitation of the first or second episode of this disorder and play less of a role in the onset of subsequent episodes. Chronic medical conditions like Multiple Sclerosis and Substance Dependence (particularly Alcohol or Cocaine Dependence) may contribute to the onset or exacerbation of this disorder.

Completed suicide occurs in up to 15% of individuals with severe Major Depressive Disorder. There is a fourfold increase in deaths in individuals with this disorder who are over age 55. Individuals with this disorder have more pain and physical illness and decreased physical, social, and role functioning.

A SPECIAL NOTE TO THOSE WHO HAVE BEEN TREATED FOR CCSVI:

Regardless of what improvements you may or may not have received due to your angioplasty and life style changes, you are still a prime target for depressive episodes. The damage done over the years with this condition does not magically disappear. It can take a long while for the brain to adapt to proper blood flow after suffering from hypoxia, medication and even lack of use. In my case, guilt has been a causal factor in depression. Some people mistakenly believe that I remain an advocate for PwMS/CCSVI for self promotion. Ginger McQueen and a few others as well as myself have talked about this in our blogs and posts. It DOES feel nice for people to say positive things about you. Everyone responds well to kind remarks. I hope that ego has not been a factor in my advocacy, but I am certain that guilt has prompted me to remain online and attend meetings, etc. It doesn’t seem fair that some people have spent an enormous amount of time money and emotional investments into getting well only to have little or no improvement. After talking with several dozen people who like myself have had substantial recovery in the quality of their lives, I see a common thread through all of them: Guilt. Feeling guilty for something over which you have no control is counter-productive and in itself can worsen depressed feelings.

One friend of mine was married for 20 years to a man who was able to support and love her throughout her increasing disability. They divorced about 6 months ago because they could not deal with her recovery. As supportive as my own family has been, the last year and a half has been a real struggle as I have tried to find my place in the family again. Chronic illness creates anger toward the ill person by spouses, parents, friends and children alike. It is a normal human reaction that many people refuse to acknowledge. The longer the disability as well as the severity has a profound effect upon relationships. My family and I never expected to see me out of a power chair again or be able to interact as I had before MS became a part of my life. We were resigned to what we had, period. Over the years they adapted to doing for themselves what I had done for them in the past. Now the tables have turned and it has taken time to adapt again to the more vibrant and healthy person I have become. As an A personality, I no longer want to be dependant. All of these things add to the stress that is so devastating to PwMS/CCSVI. It took 17 years for me to bottom out with my disabilities. Just as my body and brain are still healing, so is my emotional self.

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