Aa
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.
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.
I have a head MRI scheduled next week that the neurologist wants to look at. I guess what I am told is that my episode back in 2001 may not have depicted MS but being 6 years later the brain may show something. If not guess will look down the Lyme road and or CNS Lupus perhaps. I really have no idea and most Dr's just look at me with nothing to say. I'm just hoping for a diagnosis not only for me but to save my marriage.
The tests are unreliable as well. The best testing is from Igenex labs in California. You can find it on Google. Your doctor will probably order the ELISA. This is the most inaccurate of all the tests. I would request a western blot lyme IGG/IGM. If you have lyme a general doctor will usually not have the knowledge to properly treat it. A lyme literate MD is your best choice. I personally believe in chronic lyme. Or should I call it untreated, late-stage lyme disease. Good luck.
I have a blood lab sheet I have to get done this weekend checking my ANA, Antiphosfolipid ?, IGG/IGM and a few other tests. Although I have had these done in the past all postive, no Dr knew what to make of it all. I often wonder why they order these tests if they don't know how to read them. Will see. I have to believe Lyme and or the CNS Lupus sound like the most likely canidates. As for Lyme if it is, Don't think I will ever get the treatment since there is such a debate over if it is real and if it is how to get treated. I check with my PCP and he told me there is no such thing as Chronic Lyme yet I read everywhere else people suffering from such a condition. hmm.Thanks again for the feedback.
Again, I'm not saying it's lyme but if you resonded to antibiotics it could be. There is also something called chlamydia pneumonia that responds to antibiotics as well. I would ask for testing for bacterial diseases and viruses.
Thanks everyone for your responses, I actually have seen 3 rheumatologists and all tell me it is not a Rheumatology problem. I have often question Lupus due to the rash I continuely get on my upper chest area, you would think this would be a marker for something. I have been to so many Dr's any they all keep telling me it is not in there domain. One thing that was sort of strange was that I was on antibiotics last years for a infection and after 4 weeks being on them I started to feel a little better, once I stopped a few weeks later I was back to being sick again. I may seek out one more rheimatologists in the area. I have seen them at the Lahey clinic, MGH hostpital in Boston and a local Dr, all said it wasn't in there field. So frustrating when you know your own body and know something is wrong. Thanks again for all your responses..
I can sympathise with you. I went from being healthy and working 50 hours a week to a wreck!! It all started after I had a hysterectomy (had been bleeding almost every day on and off for a few years) After op had 6 weeks off work, went back to work and developed really bad flu which had me in bed for 2 weeks. That was the start of my downfall!! Developed a tremor in hands first, then weakness in arms, then weakness all over. Became very sensitive to noise, light and vibration. Started to dribble saliva on left corner of mouth. Few weeks later at work had a stroke like episode, then another 2 after being sent home from work. Before this happened I had started to forget things, like how to drive(!) and how to do my job (same job for 17 yrs) and dropped things all the time. I also felt like I was falling over all the time and when in complete darkness felt like there was a light on behind me. This was all over a year ago and everything is still happening to varying degrees. Have difficulty going upstairs in house due to severe muscle and joint pain and even holding the newspaper hurts. Don't feel refreshed after sleep and have constant brain 'fog'. Had MRI which showed 4 or 5 small spots on brain (neurologist said this was fine) loads of blood tests which all came back normal and doctor is baffled by all thats happening. All I can say is keep at them until you find out whats wrong with you, I know I will!!
Hi sunshine - I agree with RMariel that it sounds like an auto immune disease. The positive ANA and AP do apply to SLE (Systemic Lupus Erythromatosis). It seems odd that the Drs aren't taking this more seriously. You have a lot of abnormal test results - certainly enough to pose ???'s.
Keep seeking answers and Drs until you get an answer. Ask all the questions you need to and don't leave their office until you are satisfied. To go from being fit and healthy like you were to what you are now is NOT NORMAL.
Good luck and hope you get answers soon.
Louise
Keep seeking answers and Drs until you get an answer. Ask all the questions you need to and don't leave their office until you are satisfied. To go from being fit and healthy like you were to what you are now is NOT NORMAL.
Good luck and hope you get answers soon.
Louise
Have you been to a rheumatologist?
I have Lupus and have had many of the CNS type symptoms you have mentioned ( I was in the hospital for 3 months one time and have also had the high dose chemo for the lupus). Not to frighten you , but with a positive ANA and AP antibody, it certainly sounds autoimmune (Lupus or some other similar). You need to be treated if so , as it can be VERY serious. Do they have you on aspirin for the APS? You need to be on something. Positive AP antibodies are commonly seen in autoimmune diseases with CNS (brain...) symptoms and involvement. The lab results you mentioned (low red count, etc) is common with autoimmune also. I had to respond when I came across your post as it sounds so much like what symptoms I had when I started the CNS lupus.
I have Lupus and have had many of the CNS type symptoms you have mentioned ( I was in the hospital for 3 months one time and have also had the high dose chemo for the lupus). Not to frighten you , but with a positive ANA and AP antibody, it certainly sounds autoimmune (Lupus or some other similar). You need to be treated if so , as it can be VERY serious. Do they have you on aspirin for the APS? You need to be on something. Positive AP antibodies are commonly seen in autoimmune diseases with CNS (brain...) symptoms and involvement. The lab results you mentioned (low red count, etc) is common with autoimmune also. I had to respond when I came across your post as it sounds so much like what symptoms I had when I started the CNS lupus.
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.
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
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
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.
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
Kind Regards
? 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.
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