How to regain Lower Mobility :Part I


It is a long hard road as each of us knows to regain lower mobility. As a person who suffered with foot drop and instability I know how difficult this can be. I became very defensive when my neurologist insisted I use a walking cane or “stick” as it is called in the UK. Independence and self assurance vanished in front of my eyes. After several falls and a fair number of bruises, my options were fading and the stick became my best friend during relapses. It hid in a closet during those wonderful months I was in remission. As disability worsened, again options had to be weighed: AFO’s or a wheelchair. The thought of not being able to stand and walk crippled me emotionally long before it became a physical reality.

When left sided weakness made it too painful and unwieldy to rely on my cane, I was fitted with AFO’s. My inner rebellious nature rose to the surface when I opted for a sleek set of AFO’s with a purple butterfly pattern. More thought about designer AFO’s could have prevented embarrassment as the realization that purple butterflies might not always be the best choice with much of my wardrobe set in. I had to choose between full length sticks with arm braces or a walker. I chose a rollater walker due to the increasing weakness in my left arm. The shoes I had to wear over these monstrous pieces of plastic looked like oversized clown costume affair. I was standing on my own, so to speak, in short order. One day I took a few steps toward my youngest daughter and we both had tears in our eyes over the accomplishment.

Soon I realized that the muscles in my legs were becoming weaker rather than gaining the strength my doctor promised. I was upright, but the constant support prevented any real improvement. At that time I was unaware that IV Solumedral therapy and the use of Baclofen for spasticity had caused muscle wasting and atrophy. These side effects are rarely explained to someone whose symptoms begin to disappear like magic during a relapse.

The AFO’s were relegated to the closet next to the walking stick. Pain, clumsiness and physical therapy replaced the romantic butterflies. Foolishly steroids remained my drug of choice to overcome many of my MS symptoms. Unaware that I had developed osteoporosis, I forged ahead with my walker. Drop foot caused me to kiss the dirt on many occasions. It’s nearly impossible to prevent a face plant once a full trip has taken place.

Battered and bruised, I remained stubborn and resolute. The local emergency room staff all knew me by sight. On one occasion I arrived with two black eyes, a swollen mouth, bloody nose and blood soaked shirt and designer jeans. I turned around in my carport, missed the only step in sight and landed face down on the cement floor. My jaw and nose were broken. I had deep cuts on my mouth, arms and legs. That’s a lot of damage to sustain while traveling zero miles per hour.

Though most of my adaptive and assistive equipment is long gone, I keep the AFO’s, walking stick and power chair to remind me of a time many people might choose to forget.

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Steroid Use in MS


During my journey through MS, steroids worked wonders for me. My ON cleared rather quickly, my balance improved. I could swallow much better and my left side weakness improved by at least 50%. The relief was very welcomed, albeit temporary. Steroids don’t stop a relapse but can make parts of it more tolerable. That’s the good news. The bad news is that even oral prednisone can cause horrendous side effects.

Although I have all but recovered from MS/CCSVI symptoms, I have had to deal with permanent damage to:

  1. Pancreas
  2. Biliary system
  3. Skeletal system
  4. Reactive hypoglycemia to augment my diabetes.
  5. Osteoporosis is another gift from steroids. I had broken my jaw, shoulder, arm and fractured other less critical bones.
  6. Severe wound healing problems
  7. Cataracts
  8. Thin skin (My skin literally tears with little resistance)
  9. Abnormal Heart Rhythm
  10. Muscle Problems
  11. Dry Skin

 

My Temporary or transient effects:

  • Increase in appetite
  • Difficulty sleeping
  • Weight gain
  • Changes in mood
  • Increase blood glucose levels
  • Puffy Face
  • Staph infections
  • Trouble Breathing
  • Nausea
  • Bruising
  • Confusion
  • Unusual tiredness or weakness

 

Some of the more temporary side effects are :

  • Increase in appetite
  • Difficulty sleeping (insomnia)
  • Changes in mood and behavior
  • Flushing (redness) of the face
  • Rapid weight loss
  • Weight gain due to increased water retention. Increase blood glucose levels
  • High blood pressure
  • People with glaucoma have an increase of the pressures within their eyes
  • Worsening of symptoms in people with congestive heart
  • Irregular Periods
  • Puffy Face from Water Retention

These side effects usually resolve after a few days once the steroids are stopped.

Long term effects include:

  • Glaucoma
  • Cataracts
  • High-blood pressure
  • Heart disease
  • Diabetes mellitus
  • Obesity
  • Acid reflux/GERD
  • Osteoporosis
  • Myopathy (Muscle weakness is the most frequent symptom of the myopathy. Wasting of the affected muscles is common. Weakness of muscles may lead to unbalanced forces on the joints, causing a restriction in their range of movement and consequent joint deformity. A lack of muscular support for the spine may cause spinal curvatures (scoliosis).

Other symptoms include pain, stiffness and cramping, or the inability to relax the muscles. There may be breakdown of muscle fibers, releasing into the blood a red pigment (myoglobin) which is then seen in the urine.

  • Increase in certain types of infections
  • Cushing syndrome
  • Bleeding of the Stomach or Intestines
  • Thin Fragile Skin      
  • Low Amount of Calcium in the Blood              
  • Small Red Skin Lesions caused by Dilated Blood Vessels
  • Dry Skin
  • Pseudotumor Cerebri (Pseudotumor cerebri occurs when the pressure inside your skull (intracranial pressure) increases for no obvious reason. Symptoms mimic those of a brain tumor, but no tumor is present. The increased intracranial pressure can cause swelling of the optic nerve and result in vision loss. Medications often can reduce this pressure, but in some cases, surgery is necessary.
  • Disease of the Nerves
  • Muscle Problems     
  • Cataracts
  • Injury of the Optic Nerve
  • Complete Stoppage of the Heart      
  • Slow Heartbeat       
  • Abnormal Heart Rhythm       
  • Chronic Heart Failure            
  • Obstruction of a Blood Vessel by a Blood Clot
  • Obstruction of Blood Vessel caused by a Fat Globule 
  • Vasculitis    
  • Fluid in the Lungs
  • Ulcers of Esophagus              
  • Acute Inflammation of the Pancreas
  • Lupus-Like Syndrome            
  • Rupture of a Tendon
  • Delirium     
  • Hallucination            
  • Seizures      
  • Trouble Breathing   
  • Enlarged Liver          
  • Abnormal Liver Function Tests
  • Impaired Wound Healing     
  • Kaposi’s      
  • Insufficiency of the Hypothalamus and Pituitary Gland             
  • A Rupture in the Wall of the Stomach or Intestine      
  • Anemia       
  • Large Purple or Brown Skin Blotches
  • Decreased Neutrophils (Type of White Blood Cell)     
  • Mood Changes        
  • Paranoia    
  • Mental Disturbance
  • False Sense of Well-Being    
  • Extreme Sense of Well Being             
  • Depression
  • Blurred Vision          
  • Optic Disk Edema    
  • Hemorrhage of Blood Under the Skin             
  • Absence of Menstrual Periods           
  • Inflammation of Skin
  • Redness of Skin       
  • Skin Stretch Marks  
  • Excessive Hairiness 
  • Acne            
  • Hives
  • Joint Pain
  • Muscle Weakness   
  • Loss of Memory      
  • Feeling Faint             
  • Sensation of Spinning or Whirling     
  • Dizziness    
  • Excessive Sweating
  • Rash            
  • Visible Water Retention       
  • Scaling of Skin          
  • Head Pain  
  • Hiccups       
  • Swelling of the Abdomen     
  • Numbness and Tingling         
  • Overactive Thyroid Gland     
  • Underactive Thyroid              
  • Abnormal Fat Distribution