Posted by Calnotary on 9/9/05 6:14pm
Msg #64456
I spend all morning in the ER; Please read...
I went to my doctor last Friday and I told him that I had some numbness in my left leg, and
order some blood test, insuline level, etc etc.
Well this past 2 days started with numbness in my left side of my face, but I didnt pay to much attention
to it. This morning I was checking the posts here in Not Rot, and did a google search on stroke synthoms
and BANG! I had all the synthoms! Well I run for the hospital, did a ct scan and they found
a worm in my brain (Cysticercosis)
I am so desperate, I have no insurance. I have to see my primary phisician this Monday to be referred to a
neurologist. I feel bad not for me but for my wife and two daughters of 7 and 4 years.
I will keep posting here, and I will apreciatte any prayers from my fellow NSA. Im not very old,
Im only 40 years old, I dont want to die, excuse my post, but Im so desperate.
Calnotary
PD:IF you have synthoms of any kind see your Dr. Sorry no time for spell check.
| Reply by oldhippie_IL on 9/9/05 6:21pm
Msg #64458
OMG, I will pray for you. Fellow notaries what can we do???????
| Reply by hcampersFL on 9/9/05 6:26pm
Msg #64459
I really feel for you and your family. You are all in my prayers.
Please don't panic to soon.
Talk to your primary Dr. and get more information. Have more test run. Ask about indigent care. See if you can get medicaid. Don't stop asking for help, and don't be to proud to ask for it. This is your life and you have to take charge!!
Keep us posted and take care of yourself!
Beverly
| Reply by Jenny_CA on 9/9/05 6:37pm
Msg #64461
I too will pray for you and your family.
| Reply by Iris_WA on 9/9/05 6:37pm
Msg #64460
You and your family will be in my prayers. I can only imagine how terrifying this must sound to you, but please ... don't imagine the worst!!! You don't know what can happen.
Medicine has made AMAZING advances, and things that might have been fatal before are no longer always so.
Do your best to hang in there over the weekend and until you talk to a knowledgeable physician/neurologist. This will be the worst part -- waiting. I only wish you could get to talk to someone today so you don't have to spend the whole weekend in the pit of desolation I feel from your words.
TAKE HEART!! HANG IN THERE!!! And try to keep yourself as calm as possible this weekend --even if it takes shedding a few tears. There is nothing wrong with allowing your emotions to release themselves.
You and your family are in my heart!
| Reply by Donna_CA on 9/9/05 6:59pm
Msg #64463
I will remember you and your family in my prayers. Don't panic. See what the neurologist says and I'm sure there must be a treatment. The first priority is your health. They hopefully can work out a payment plan for you.
| Reply by Susan Tusing on 9/9/05 7:03pm
Msg #64464
I am praying for you as well. Listen to what everyone has posted. . . try to get medicaid . . don't be too proud, we are all praying for you!
| Reply by Giselle_CA on 9/9/05 7:21pm
Msg #64465
I am sorry to hear that CalNotary. However, you will be amazed what prayers can do. As well as for many others here, you will too be in my prayers. Take courage and Hang in there.
| Reply by patricia on 9/9/05 7:25pm
Msg #64466
most counties have a program where you can pay according to your income. In San Francisco
it is called Community Health Network and they allow patients to pay based on a sliding scale.
I have been told the medical care is excellent. I know San Mateo County has something similar.
| Reply by yoyo on 9/9/05 8:13pm
Msg #64470
I feel for you and I will be praying for you. Have you applied for medical assistance (welfare office) also check your government webpage and do a search on health insurance, I know here in Pennsylvania if you don't qualify for Medical Assistance, you can apply for health insurance from government for a lower price than regular insurance. Good luck
| Reply by BarbaraL_CA on 9/9/05 8:20pm
Msg #64471
There is power in prayer and you and your family are on my prayer list. I ask that God gives you strength and wisdom during this time.
You might want to see if there are any clinical trials in your area for cycticercosis - ask the neurologist.
| Reply by Calnotary on 9/10/05 8:33am
Msg #64526
Hi Barbara I found one clinical trial for this condition, but I couldnt find where is located.
Thank you all for your support!
| Reply by BarbaraL_CA on 9/10/05 10:23am
Msg #64546
Clinical Trial link below.
| Reply by BarbaraL_CA on 9/10/05 10:27am
Msg #64548
Link to clinical trial site: http://www.clinicaltrials.gov/ct/gui/show/NCT00001205
Looks like location is Bethesda, MD, but it certainly wouldn't hurt to contact them for information in your area, and mention it to your neurologist also.
Location and Contact Information
Please refer to this study by ClinicalTrials.gov identifier NCT00001205
Maryland
National Institute of Allergy and Infectious Diseases (NIAID), 9000 Rockville Pike, Bethesda, Maryland, 20892, United States; Recruiting
Patient Recruitment and Public Liaison Office 1-800-411-1222 [e-mail address]
TTY 1-866-411-1010
| Reply by Earldean Mayfield on 9/9/05 8:35pm
Msg #64474
You have my Familys prayers. God bless you.
We walk by faith not by sight
| Reply by BLE on 9/9/05 8:49pm
Msg #64478
I'll be keeping you in my prayers. Everyone is right...try to see what services you can get to help with the financial burden this is causing.
| Reply by Joan_OH on 9/9/05 9:13pm
Msg #64481
CalNotary. Please contact me.
I have some reading material for you that you might find very helpful and inexpensive.
Joan-OH
| Reply by Susan Lewis on 9/9/05 9:40pm
Msg #64485
Please listen to the posts regarding the power of prayer. It creates miracles. You will be in my prayers.
| Reply by oldhippie_IL on 9/9/05 9:53pm
Msg #64486
OUR PRAYER'S ARE GOING! LOVE ALL OF YOU GUYS.
| Reply by TLR_KY on 9/9/05 10:57pm
Msg #64491
I pray for you in your family during this time of your life. Remember that God has ways of solving all of life trials. Put everything in his hand and he will listen. God bless.
| Reply by JO_PA on 9/9/05 11:07pm
Msg #64493
THINKING ABOUT YOU
I'll be thinking about you. you did the right thing by getting checked out at the hospital. i'm sure your family loves you very much and will stand by you. AND who knows, maybe it will turn out NOT to be the aorst that you can imagine. Don't let your thoughts run away with you common sense.
Check with the hospital about payments (sometimes they have grant programs for people with no insurance. Also check with the VNA (Visiting Nurse Association), they have all kinds of programs (they even gave me a grant for my paramedic school).
Last but not least, ask you doctor if he knows of any programs to help with payments.
Good Luck! Again, you'll be in my thoughts!
| Reply by Anonymous on 9/9/05 11:30pm
Msg #64497
Please have faith and know that you are in my prayers. MaY God bless and heal you.
| Reply by Anonymous on 9/9/05 11:30pm
Msg #64498
Please have faith and know that you are in my prayers. MaY God bless and heal you.
| Reply by Eugene Tripp on 9/10/05 1:33am
Msg #64507
Please know that you and your family are in our prayers, and that you are not alone.
| Reply by DogmongerCA on 9/10/05 7:50am
Msg #64521
This is what he is up against
My prayers go out to you for a complete and full recovery
Alphabetical Listing | Travel
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Esta página en Español
Cysticercosis
(SIS-tuh-sir-KO-sis)
What is cysticercosis?
Cysticercosis is an infection caused by the pork tapeworm, Taenia solium. Infection occurs when the tapeworm larvae enter the body and form cysticerci (SIS-tuh-sir-KEY) (cysts). When cysticerci are found in the brain, the condition is called neurocysticercosis (NEW-row SIS-tuh-sir-KO-sis).
Where is cysticercosis found?
The tapeworm that causes cysticercosis is found worldwide. Infection is found most often in rural, developing countries with poor hygiene where pigs are allowed to roam freely and eat human feces. This allows the tapeworm infection to be completed and the cycle to continue. Infection can occur, though rarely, if you have never traveled outside of the United States. Taeniasis and cysticercosis are very rare in Muslim countries where eating pork is forbidden.
How can I get cysticercosis?
By accidentally swallowing pork tapeworm eggs. Tapeworm eggs are passed in the bowel movement of a person who is infected. These tapeworm eggs are spread through food, water, or surfaces contaminated with feces. This can happen by drinking contaminated water or food, or by putting contaminated fingers to your mouth. A person who has a tapeworm infection can reinfect themselves (autoinfection). Once inside the stomach, the tapeworm egg hatches, penetrates the intestine, travels through the bloodstream and may develop into cysticerci in the muscles, brain, or eyes.
What are the signs and symptoms of cysticercosis?
Signs and symptoms will depend on the location and number of cysticerci in your body.
Cysticerci in the muscles:
Cysticerci in the muscles generally do not cause symptoms. However, you may be able to feel lumps under your skin.
Cysticerci in the eyes:
Although rare, cysticerci may float in the eye and cause blurry or disturbed vision. Infection in the eyes may cause swelling or detachment of the retina.
Neurocysticercosis (cysticerci in the brain, spinal cord):
Symptoms of neurocysticercosis depend upon where and how many cysticerci (often called lesions) are found in the brain. Seizures, and headaches are the most common symptoms. However, confusion, lack of attention to people and surroundings, difficulty with balance, swelling of the brain (called hydrocephalus) may also occur. Death can occur suddenly with heavy infections.
How long will I be infected before symptoms begin?
Symptoms can occur months to years after infection, usually when the cysts are in the process of dying. When this happens, the brain can swell. The pressure caused by swelling is what causes most of the symptoms of neurocysticercosis. Most people with cysticerci in muscles won’t have symptoms of infection.
How is cysticercosis diagnosed?
Diagnosis can be difficult and may require several testing methods. Your health care provider will ask you about where you have traveled and your eating habits. Diagnosis of neurocysticercosis is usually made by MRI or CT brain scans. Blood tests are available to help diagnose an infection, but may not always be accurate. If surgery is necessary, confirmation of the diagnosis can be made by the laboratory.
What should I do if I think I have cysticercosis?
See your health care provider.
Is there treatment for cysticercosis?
Yes. Infections are generally treated with anti-parasitic drugs in combination with anti-imflammatory drugs. Surgery is sometimes necessary to treat cases in the eyes, cases that are not responsive to drug treatment, or to reduce brain edema (swelling). Not all cases of cysticercosis are treated.
I have been diagnosed with neurocysticercosis. My health care provider has decided not to treat me. How was this decision made?
Often, the decision of whether or not to treat neurocysticercosis is based upon the number of lesions found in the brain and the symptoms you have. When only one lesion is found, often treatment is not given. If you have more than one lesion, specific anti-parasitic treatment is generally recommended.
If the brain lesion is considered calcified (this means that a hard shell has formed around the tapeworm larvae), the cysticerci is considered dead and specific anti-parasitic treatment is not beneficial.
As the cysticerci die, the lesion will shrink. The swelling will go down, and often symptoms (such as seizures) will go away.
Can infection be spread from person to person?
No. Cysticercosis is not spread from person to person. However, a person infected with the intestinal tapeworm stage of the infection (T. solium) will shed tapeworm eggs in their bowel movements. Tapeworm eggs that are accidentally swallowed by another person can cause infection.
Should I be tested for an intestinal tapeworm infection?
Yes. Family members may also be tested. Because the tapeworm infection can be difficult to diagnose, your health care provider may ask you to submit several stool specimens over several days or to examine your stools for evidence of a tapeworm.
How can I prevent cysticercosis and other disease causing germs?
Avoid eating raw or undercooked pork and other meats.
Don’t eat meat of pigs that are likely to be infected with the tapeworm.
Wash hands with soap and water after using the toilet and before handling food, especially when traveling in developing countries.
Wash and peel all raw vegetables and fruits before eating. Avoid food that may be contaminated with feces.
Drink only bottled or boiled (1 minute) water or carbonated (bubbly) drinks in cans or bottles. Do not drink fountain drinks or any drinks with ice cubes. Another way to make water safe is by filtering it through an "absolute 1 micron or less" filter AND dissolving iodine tablets in the filtered water. "Absolute 1 micron" filters can be found in camping/outdoor supply stores.
For more information:
Del Brutto OH, Rajshekhar V, White AC, Tsang VCW, Nash TE, Takayanugi OM, Schantz PM, Evans CAW, Flisser A, Correa D, Boero OD, Allan JC, Sarti E, Gonzalez AE, Gilman RH, Garcia HH. Proposed diagnostic criteria for neurocysticcercosis. Neurol 2001; 57: 177-183.
Garcia HH, Evans CAW, Nash TE, Takayanagui O, White AC, Botero DV, Tsang VCW, Schantz P, Allan J, Flisser A, Correra D, Sarti E, Friedland J, Martinez SM, Gonzalez AE, Gilman RH, Del Brutto OH. Consesus: Current Guidelines for the Treatment of Neurocysticercosis. Clin Microbiol Rev 2003; 15:747-56.
Schantz PM, Taenia solium Cysticercosis: an Overview of Gobal Distribution and Transmission. Chapter in Taenia solium Cysticercosis. From Basic to Clinical Science, CABI Publishing, 2002, pp. 63-74.
Shandera WX, Schantz PM, White AC. Taenia solium cysticercosis: The special case of the United States. Chapter in Taenia solium Cysticercosis. From Basic to Clinical Science, CABI Publishing, 2002, pp. 139-144.
This fact sheet is for information only and is not meant to be used for self-diagnosis or as a substitute for consultation with a health care provider. If you have any questions about the disease described above or think that you may have a parasitic infection, consult a health care provider.
| Reply by Calnotary on 9/10/05 8:45am
Msg #64527
Re: This is what he is up against
Thank you DogmongerCA, I have printed out this. I also see the same report in the web.
Thank you everybody!
| Reply by MBCA on 9/10/05 11:29am
Msg #64558
Re: This is what he is up against
For what it's worth you are in my prayers also. If this is serious try to contact social services and find out if anything can be done for you financially! Look at it this way, you and all of us have been paying our taxes for years and we'd much rather see someone who really needs the help get it. Don't be proud, all of us need help sometime or other! I wonder what would happen to a lot of us if we couldn't go out and do our jobs? Anyone of us could be in the same position!
| Reply by SarahBeth_CA on 9/10/05 11:37am
Msg #64561
Re: This is what he is up against
You and your family are in our hearts and prayers.
| Reply by carlosnyc on 9/10/05 4:06pm
Msg #64578
Re: This is what he is up against
I'm very sorry to hear about your illness Calnotary. My prayers are with you and I pray that everything will work out for you the long run. Hang in there.
| Reply by DM_FL on 9/10/05 3:01pm
Msg #64570
I'm sorry to hear about your illness. I have some information that you might be interested in. Please email me.
| Reply by TitleGalCA on 9/10/05 7:21pm
Msg #64603
Calnotary, my prayers are with you as well as all the others, and there's great power in prayer.
Know that the state of CA does take care of families with small children, do check into Medicaid/Welfare, the state has a responsibility to you and your family. Its for families like yours that help is available, and so deserved. I'm praying for you.
| Reply by BrendaTX on 9/11/05 1:45am
Msg #64642
I read your post yesterday and then I read about your problem. You've got your work cut out for you. If ever there was a call for someone to get into a crash course on positive thinking it would be you. Your situation is not easy, Bless You!
Your health battle can be assisted by your thoughts. Fix your mind determinedly for a successful outcome and do not let negative or concerns be entertained for even a moment. Do not let negative thoughts stay for even a minute.
Your post has weighed on my mind and I have said my prayers for you. Prayers actually do make a difference. So does your state of mind and how you choose to perceive and approach a problem. Be confident that you will not be one of those who have great difficulty with this problem.
I believe if you expect the worst you have a better shot of getting it. If you think the worst you will find more and more to worry and fret about.
Expect the best possible outcome and you'll get ideas on ways to get through your situation.
Decide where you are going to be in ten years and what you'll be doing. Focus on that. Keep your good outcome very real in your mind and as tangible as possible.
Draw it, write it, think about it, expect it, plan for it, live it and breathe it. And, when the negative thoughts come in, show them the door.
If you need to feel sorry for yourself, then you do. Do it. Set a time limit for it, don't apologize for feeling upset and wallow very thoroughly, then leave it behind and put your positive thoughts back on guard duty.
Please do not take my words as being from someone who loves to tell people how to do things they have never done before. I have had repeated opportunities to practice what I preach. Sometimes I do well and sometimes I fail miserably. And, when I fail I refuse to feel guilty about it. With practice, keeping a productive/positive outlook becomes easier and enjoyable.
Just know that your well-being and a good future is my prayer for you and your family.
Brenda Stone
| Reply by TitleGalCA on 9/11/05 12:15pm
Msg #64662
Calnotary
If you could do one thing for yourself that will get you through this - take Brenda's advice. It's sound. I'm working through some difficult times too, and the only way I'll make it is to be positive and let the power of hope overcome what appears to be impossible. Impossible things and miracles happen every day.
It's hard to convey this over something as dry as the internet, and I don't want to send out hollow words to a very for-real problem you are suffering through. The power of hope and prayer is HUGE Cal...don't discount it for one minute and hang on to your family, the love there and every bit of help you are offered. Brenda said it well, please think on it.
Love and prayers to you!
| Reply by JanetK_CA on 9/11/05 12:26am
Msg #64634
Health Insurance and priorities
Calnotary, I too, wish you a positive outcome with as little necessary treatment as possible! Your experience brings to mind a hot button issue of mine. These comments aren't meant to be directed to you, but perhaps others can benefit from your experience.
I cringe every time I hear someone say that they can't afford health insurance. This is a (hopefully minor) example of how we can't afford to NOT have health insurance. Yes, I know it is expensive, especially with a family. I pay an horrendous amount, compared to most, for health insurance that provides very little benefit because of my past health history, but the potential cost of not having at least hospitalization and major medical (I'm no expert, so I may not have the terms exactly right) far outweighs the short term premium costs. And your life may depend on it!
It's a matter of priorities. When I was starting out as an SA, what I couldn't afford was vacations, new gadgets, new clothes, going to the movies, eating at restaurants, etc. -- anything other than absolute bare bones necessities. But going without health insurance was never an option. My overall healthcare costs are still a very disproportionate chunk of my income compared to other expenses (on par with my housing costs), but if I were to get sick again, it could cost me tens (if not hundreds) of thousands of dollars and probably loss of my home. (And I doubt a discount plan would make a sufficient enough difference for most of us.) That's a risk that I, for one, am not willing to take.
No one ever thinks an accident or illness will happen to them, but it can happen to anyone at any age and in any state of perceived health! There are options available to everyone, at least in CA, which is all I can speak to. Even if you are self-employed with no access to group insurance, there is a state pool that makes insurance available for those considered "major risk". If you've been healthy, the premiums are much lower. The key is to maintain continuous coverage. (That's where COBRA comes in. I actually saved lots of money on COBRA!) The coverage won't be what you'd expect from a company group policy, of course, but it's better than risking a catostrophic loss. I imagine most states have some kind of program.
If you don't currently have health insurance, I encourage you to take another look at your family's priorities and consider making a change. This is not meant to be judgemental, but rather to give a different perspective to an issue many of us, as independent contractors, have. Hopefully it will make a difference for someone.
Calnotary, God bless and please keep us posted on your progress!
| Reply by MDJane on 9/12/05 3:55pm
Msg #64818
My mom had cysticercosis !!
I am so sorry to read this post. I will praying for your Calnotary.
I am from Peru and my mom suffered this disease about the year 2001 when I was still living with her. My family and I were tested and the results were negative so it was only her. My mom was treated with anti-parasitic drugs that caused several seizures. Unfortunately the worms caused hydrocephalus obstructive so the doctors treated this with surgery and inserted a valve system. After one year, those parasits which were already calcified started to go down and caused pression on the spinal cord and a paraplegia was developed. Another surgery was performed on her and with rehabilitation she started to walk soon.
Bottom line, my mom and all my family went through a very hard time, probably the hardest time of my life so far, but we took it with courage and faith in God. Now she is living a normal life, even though she has had 6 serious surgeries (only 2 for this disease). I talk to her on the phone every sunday and make sure she gets everything she needs. Regarding this disease, she needs periodic control (Magnetic resonance imaging and CT scan) and also takes those anti-parasitic drugs from time to time to prevent re-infection.
I am possitive this wonderful country has the latest tecniques to treat this disease. God bless you Calnotary!.
| Reply by Calnotary on 9/12/05 6:13pm
Msg #64833
Re: My mom had cysticercosis !!
MDJane please e mail me! jpg [e-mail address]
Of course my e mail without the space after the jpg
thank you. I would like to speak to you.
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