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Desperate plea for help

A little history as it is 5 years later :(. A little long but Thank you so much for reading.

Prior to November of 2001, healthy energetic female, athletic, running upwards of 5 miles per day, daily aerobic workouts and weightlifting.   BP always normal, (110/70 – 120/80) even throughout entire pregnancy. Chronic pelvic pain of 8 years prompted  surgery for endometriosis in March 2000. November 2001, gave birth to a healthy girl, no known complications although very difficult labor.  Very run down after delivery with chronic congestion, fatigue and pain. After 8 months of continued congestion, fatigue and pain went to doctor. Had positive ANA but negative for arthritis and Lyme. Was sent to PT to help with muscularsketal issues. In November 2002 developed illness consisting of severe fatigue (difficulty getting out of bed from fatigue), swollen glands and soar throat. In December 2002, went to doctor due to bright green nasal discharge sore throat, nausea, swollen glands, and tremors on right side. Had syncope in doctor office.  Sent to hospital with cardiac testing showing no abnormalities. Blood testing showed low red count, low hematocirt, low potassium, low magnesium, and low calcium. White count was normal. Illness was not producing any vomiting and I was eating and drinking sufficiently. No known reason for lab results. Discharged still not feeling well. One week later after holding and playing with daughter developed severe headache. Went to lay down and developed slurred speech, inability to move right side, bluish color in fingernails and vertigo. My blood pressure was also elevated. Didn’t want to go to hospital since just there a week ago. Finally agreed to go to hospital 3 hours after event. When CT scan was done, didn’t show stroke. Other tests included echo, brain MRI and upper GI. All negative. There were some areas of high-signal in brain MRI, but they felt they were non-specific. ECG showed some low beta activity but didn’t feel it was relevant.  Blood tests showed positive anti-phospholipid antibody at high 89.9, positive ANA and some lymph counts, but no elevation in white count.  

I  was discharged 3 days later unable to walk.  Weakness was so severe, I couldn’t cut my food or use a pair of scissors. I also would get tremors where something I was holding would just fly out of my hand. Went through 6 months PT to gain strength on Right side and improve balance. During the process I continued to have migraines, nausea, clumsiness and  knees would often buckle when trying to walk. At times it was difficult to breath and I felt like I was choking and would get severe shortness of breath, but no weezing. I had pulmonary function tests at 50% of capacity, although I nevered weez. Pulmonary did not give definitive diagnosis since I don’t weez.

Although I  can now walk, I have permanent right side weakness and continues to get “flare ups” of migraines, clumsiness, vertigo, tripping on feet, blurred vision, high blood pressure, shortness of breath, heat intolerance, irritability, nausea, and occasional night sweats and insomnia. Also have episodes of blurred vision, and lightheadedness, especially upon standing and gets motion sick.  I  also has a chronic measle like rash on chest and abdomen that sometimes looks bumpy, other times flat,  and other times is not visible at all, in addition to some non-painful lumps under skin developed sometime after illness in 2002, possibly related.

Today, October 2008 and 5 years later, I continue to experience symptoms exhibiting neurological conditions; right side weakness, migraine headaches, blurred vision, clumsiness, neuropathy, bone and muscle pain, air hunger, vertigo (imbalance), nausea, intermittent high blood pressures, as high as 170/110, especially in morning hours between 7AM and 12PM. The only new symptoms since 2002 is corneal edema and blepharitis. I am also being treated for interstitial cystitis. Hormones seem to play a role in episodes of high BP. Has tried to see many doctors to get answers and they all keep telling her to see a neurologist.


15 Responses
Avatar universal
? lyme disease.  It can cause all of this..Has the MRI been repeated.  I'm very sorry about your problems.  It sounds just awful.  If you haven't already, I would see a neuro at a large, teaching facility.  I would see an MS specialist (neuroimmunologist).  They are more skilled at diagnosing unusual neuro problems.
Avatar universal
Avatar universal
Thank you patsy10 for responding, I thought about Lyme disease as I live in Northern New Hampshire and am always pulling ticks off my pets.  I just find it hard to believe that a tick bite / lyme disease could possibly cause all this havoc. I haven't had an MRI since late 2002 so perhaps it would warrant getting another to see if anything has changed.  I first have to find a neuro that will listen to me.  Thanks again for your feedback
Kind Regards
Avatar universal
It absolutely can cause all that you are experiencing.  Do some research on lyme.  Not saying you have it but neuro lyme can mimick MS and many other conditions.  Especially considering where you live.  I would seriously look into it.
Avatar universal
Source:
http://www.canlyme.com/patsymptoms.html

PRINT AND CIRCLE ALL YES ANSWERS (20 yes represents a serious potential and Lyme should be included in diagnostic workup)

Symptoms of Lyme Disease:
The Tick Bite (fewer than 50% recall a tick bite or get/see the rash)
Rash at site of bite
Rashes on other parts of your body
Rash basically circular and spreading out (or generalized)
Raised rash, disappearing and recurring

Head, Face, Neck:
Unexplained hair loss
Headache, mild or severe, Seizures
Pressure in Head, White Matter Lesions in Head (MRI)
Twitching of facial or other muscles
Facial paralysis (Bell's Palsy)
Tingling of nose, (tip of) tongue, cheek or facial flushing
Stiff or painful neck
Jaw pain or stiffness
Dental problems (unexplained)
Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose


Eyes/Vision:
Double or blurry vision
Increased floating spots
Pain in eyes, or swelling around eyes
Oversensitivity to light
Flashing lights/Peripheral waves/phantom images in corner of eyes


Ears/Hearing:
Decreased hearing in one or both ears, plugged ears
Buzzing in ears
Pain in ears, oversensitivity to sounds
Ringing in one or both ears

Digestive and Excretory Systems:
Diarrhea
Constipation
Irritable bladder (trouble starting, stopping) or Interstitial cystitis
Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)

Musculoskeletal System:
Bone pain, joint pain or swelling, carpal tunnel syndrome
Stiffness of joints, back, neck, tennis elbow
Muscle pain or cramps, (Fibromyalgia)

Respiratory and Circulatory Systems:
Shortness of breath, can't get full/satisfying breath, cough
Chest pain or rib soreness
Night sweats or unexplained chills
Heart palpitations or extra beats
Endocarditis, Heart blockage

Neurologic System:
Tremors or unexplained shaking
Burning or stabbing sensations in the body
Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis
Pressure in the head
Numbness in body, tingling, pinpricks
Poor balance, dizziness, difficulty walking
Increased motion sickness
Lightheadedness, wooziness

Psychological well-being:
Mood swings, irritability, bi-polar disorder
Unusual depression
Disorientation (getting or feeling lost)
Feeling as if you are losing your mind
Over-emotional reactions, crying easily
Too much sleep, or insomnia
Difficulty falling or staying asleep
Narcolepsy, sleep apnea
Panic attacks, anxiety

Mental Capability:
Memory loss (short or long term)
Confusion, difficulty in thinking
Difficulty with concentration or reading
Going to the wrong place
Speech difficulty (slurred or slow)
Stammering speech
Forgetting how to perform simple tasks

Reproduction and Sexuality:
Loss of sex drive
Sexual dysfunction
Unexplained menstral pain, irregularity
Unexplained breast pain, discharge
Testicular or pelvic pain

General Well-being:
Unexplained weight gain, loss
Extreme fatigue
Swollen glands/lymph nodes
Unexplained fevers (high or low grade)
Continual infections (sinus, kidney, eye, etc.)
Symptoms seem to change, come and go
Pain migrates (moves) to different body parts
Early on, experienced a "flu-like" illness, after which you have not since felt well.
Low body temperature
Allergies/Chemical sensitivities
Increased effect from alcohol and possible worse hangover




  

Avatar universal
sorry to hear about your symptoms must be very scary. What have they said to you about the positive antiphospholipids? as this increases your liklihood of blood clotting (although i think you have to have two positive tests 6 weeks apart as these antibodies can rise and fall for different reasons) although your MRI and CT was negative which has ruled out bloot clot on the brain which is good.
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