Discussions By Condition: I cannot get a diagnosis.

please help! I am not going to lose her!

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: for my mom
  • September 9, 2009
  • 04:25 PM

I will try to make this as short as possible but there is a lot to tell.

At age 40 my mom had a stroke and the a few months later she was diagnosised with breast cancer. She is now 47 and cancer free and has no side affects from the stroke. She was doing very well until about 2 year ago. She has had 7 of what we call “spells” in 2 years. They were just happening about twice a year and now ever couple months.

These are her symptoms: She wakes in the middle of the night with very bad stomach cramps. This then follows by vomiting and about 5 to 7 very large bowel movements. Then she will have diarrhea. It is unbelievable how much stool comes out of her. She also will pass out while all of this is going on so it is hard for to get out of bed. The reason she passes out is because her blood pressure drops very low. Her lips will turn blue and swell very bad. She gets hot and cold. Her skin is very clammy and cold. She is in and out of it. This has only happened one time during the day every other time it is at night.

Her blood pressure will get so low that we have to call EMS. When EMS comes her blood pressure is so low they usually can not even get it to take. We rush to the hospital where they do the same test every time. Sometimes her blood pressure will come back up on it’s on or she has to have an IV med called midodrine to raise her blood pressure. While on this med she has to be closely monitored. They give her IV antibiotics and IV fluids and this usually makes her feel better. She gets very dehydrated even before the diarrhea starts.

She has to spend about a week in the hospital while they so the same tests that are always done She usually feels a little better the next day after a “spell” but is very weak. We feel like we wait around for this to happen again because we can not get any answers.

She has had CT’s and MRI’s of the head and stomach, colonoscopy, stool samples, urine samples, blood work, table tilt test, food allergy test, checked her carotid artery (this was blocked and caused the stroke).

When at the hospital they say she has colitis. They also always think she has C-Diff but after a stool sample for 24 hours they say she does not have it. Her colon is always inflamed. She usually gets a UTI while in the hospital. She has had renal failure twice when having a “spell”.

She has seen many different doctors. She has a Gastroenterologist, Neurologist, PCP, Allergist, and Cardiologist. She has had a second opinon from all of these doctors. No one has found anything. Her Cardiologist told us if we do not find out what is going on this will be fatal. All of her doctors send her back and forth to each other. She is very frustrated and so am I.

Please help us!! I want her to have a normal and healthy life.

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  • I will try to make this as short as possible but there is a lot to tell. At age 40 my mom had a stroke and the a few months later she was diagnosised with breast cancer. She is now 47 and cancer free and has no side affects from the stroke. She was doing very well until about 2 year ago. She has had 7 of what we call “spells” in 2 years. They were just happening about twice a year and now ever couple months. These are her symptoms: She wakes in the middle of the night with very bad stomach cramps. This then follows by vomiting and about 5 to 7 very large bowel movements. Then she will have diarrhea. It is unbelievable how much stool comes out of her. She also will pass out while all of this is going on so it is hard for to get out of bed. The reason she passes out is because her blood pressure drops very low. Her lips will turn blue and swell very bad. She gets hot and cold. Her skin is very clammy and cold. She is in and out of it. This has only happened one time during the day every other time it is at night. Her blood pressure will get so low that we have to call EMS. When EMS comes her blood pressure is so low they usually can not even get it to take. We rush to the hospital where they do the same test every time. Sometimes her blood pressure will come back up on it’s on or she has to have an IV med called midodrine to raise her blood pressure. While on this med she has to be closely monitored. They give her IV antibiotics and IV fluids and this usually makes her feel better. She gets very dehydrated even before the diarrhea starts. She has to spend about a week in the hospital while they so the same tests that are always done She usually feels a little better the next day after a “spell” but is very weak. We feel like we wait around for this to happen again because we can not get any answers. She has had CT’s and MRI’s of the head and stomach, colonoscopy, stool samples, urine samples, blood work, table tilt test, food allergy test, checked her carotid artery (this was blocked and caused the stroke). When at the hospital they say she has colitis. They also always think she has C-Diff but after a stool sample for 24 hours they say she does not have it. Her colon is always inflamed. She usually gets a UTI while in the hospital. She has had renal failure twice when having a “spell”. She has seen many different doctors. She has a Gastroenterologist, Neurologist, PCP, Allergist, and Cardiologist. She has had a second opinon from all of these doctors. No one has found anything. Her Cardiologist told us if we do not find out what is going on this will be fatal. All of her doctors send her back and forth to each other. She is very frustrated and so am I. Please help us!! I want her to have a normal and healthy life. What is your mums stools like?Are there any unprocessed food particles?Is there a very foul odour or just regular odour?Is there any mucus or blood in stool or not?Is there any burning feelings with the diarrhea?Has she eaten any shellfish?Was she taking alot of medication for the breast cancer or for a long period of time?Have they checked her electrolytes?What does your mums complexion look like?Is it healthy or sallow and lifeless?Is her skin dry?Are her limbs generally cold and/or does she feel cold often?Any runny nose or other cold like symptoms?In Traditional Chinese Medicine it is recommended to eat plain white rice while a person has diarrhea as this will firm up the stools and sooth the stomach.Also its recommended to drink sufficient liquids like vegetable broth for example to avoid dehydration.It would be a good idea though to consult with her primary doctor regarding this first to make sure rice etc is suitable for your mothers situation.I just asked a nurse and doctor about your mums symptoms and this is what they said:The nurse for some reason suggested your mum see an endocrinologist to check for addisons disease and she inquired whether your mum was still having menstrual cycle and did these symptoms only happen when she used tamponsThe Md recommended that she be tested to rule out Cryptosporidium.He said "This is an atypical pathogen that would often be missed. Most people would have a single severe bout of diarrhea and their immune system would clear the infection.Second idea on this problem is >>> Does she have well water? City water? It sounds as if she is being re-exposed to something toxic to her colon. This might be infection or other . I would make sure that atypical pathogens be considered as some may require specific testing.She has probably had stool examined times three samples for ova and parasites. If not this should be done. I would advise her to not drink her tap water for now and have it tested. Giardia is a parasitic infection sometimes associated with springs or well water.I think her passing out and lips turning blue and episodes of renal failure are all due to hypovolemic shock. It can harm all the organs to have the blood pressure drop too low. Her cardiac output was probably inadequate when her lips turned blue.I think the CAUSE of the COLITIS will be the key.Consider consulting an infectious disease specialist.Testing for a food allergy would be prudent if not done. I doubt this is the cause but I would favor ruling it out. There are blood panels to test for antibodies against the most common food allergies.(I would expect more gastritis and vomiting typically with this...)"
    Anonymous 42789 Replies
    • September 10, 2009
    • 04:03 PM
    • 0
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  • You may also want to see my advice at http://forums.wrongdiagnosis.com/showthread.php?t=63429 - specific comment http://forums.wrongdiagnosis.com/showthread.php?p=196056#post196056 - I explained there how a Chinese Traditional Medicine (TCM) doctor helped my mom. Without him she would have been dead today. Stroke and cancer usually indicate a general systemic weakness (energy imbalance) that Western doctors are no good with. Fixing this will cure all the rest. A well trained TCM doctor can easily do that. Take him or her your answers to what iwinc asked above, the more info the better.
    Curly Stooge 319 Replies
    • September 10, 2009
    • 10:21 PM
    • 0
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  • What is your mums stools like?Are there any unprocessed food particles?Is there a very foul odour or just regular odour?Is there any mucus or blood in stool or not?Is there any burning feelings with the diarrhea?Has she eaten any shellfish?Was she taking alot of medication for the breast cancer or for a long period of time?Have they checked her electrolytes?What does your mums complexion look like?Is it healthy or sallow and lifeless?Is her skin dry?Are her limbs generally cold and/or does she feel cold often?Any runny nose or other cold like symptoms?In Traditional Chinese Medicine it is recommended to eat plain white rice while a person has diarrhea as this will firm up the stools and sooth the stomach.Also its recommended to drink sufficient liquids like vegetable broth for example to avoid dehydration.It would be a good idea though to consult with her primary doctor regarding this first to make sure rice etc is suitable for your mothers situation. I just asked a nurse and doctor about your mums symptoms and this is what they said:The nurse for some reason suggested your mum see an endocrinologist to check for addisons disease and she inquired whether your mum was still having menstrual cycle and did these symptoms only happen when she used tampons The Md recommended that she be tested to rule out Cryptosporidium.He said "This is an atypical pathogen that would often be missed. Most people would have a single severe bout of diarrhea and their immune system would clear the infection.Second idea on this problem is >>> Does she have well water? City water? It sounds as if she is being re-exposed to something toxic to her colon. This might be infection or other . I would make sure that atypical pathogens be considered as some may require specific testing.She has probably had stool examined times three samples for ova and parasites. If not this should be done. I would advise her to not drink her tap water for now and have it tested. Giardia is a parasitic infection sometimes associated with springs or well water.I think her passing out and lips turning blue and episodes of renal failure are all due to hypovolemic shock. It can harm all the organs to have the blood pressure drop too low. Her cardiac output was probably inadequate when her lips turned blue.I think the CAUSE of the COLITIS will be the key.Consider consulting an infectious disease specialist.Testing for a food allergy would be prudent if not done. I doubt this is the cause but I would favor ruling it out. There are blood panels to test for antibodies against the most common food allergies.(I would expect more gastritis and vomiting typically with this...)" Thank you so much for your replay! There are not any unprocessed food particles in her stool but there is a foul odor. The only way she can really tell that she is about to have a "spell" is when she goes to the bathroom for the first time she will say it has that smell. So it is different from a normal bowel movement. There is a lot of mucus in her stool. There is some blood but not normaly until after she has been to the bathroom a lot which may be caused from going to the bathroom so much. She does have burning with the diarrhea at times. She did take tamoxifen for 5 years for the cancer and also had chemo. She took that through an IV not a port so now she is a very hard stick now. She does not take anything now for the cancer but can not take any type of hormones. She has not eaten any shellfish and normaly does not. We are not sure if she has had her electrolytes checked or not. Her complextion is ok. She does have some dark and red spots on her body and some of them show up after laying out in the sun. Her skin use to not be this way. Her skin is very dry and usually cold. She is cold a lot. She does have a cold or sinus infection a lot. She never really feels that great. She does get sick more the the average person. Usually with a cold, cough or sinus inf. She does still have a mestrual cycle. She has had a DNC. They thought they would have stoped by now but have not. They are very irregular. She does use tampons but her "spells" do not happen when on her cycle. She is on city water and has been all her life. She has lived in the house that she lives in now for about 7 years and did not have these problem until about 3 years ago. She has had stool samples taken numberious times. She has also been tested for food allergies and does not have any. Thanks again for your replay.
    for my mom 1 Replies
    • September 11, 2009
    • 05:26 PM
    • 0
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  • What is your mums stools like?Are there any unprocessed food particles?Is there a very foul odour or just regular odour?Is there any mucus or blood in stool or not?Is there any burning feelings with the diarrhea?Has she eaten any shellfish?Was she taking alot of medication for the breast cancer or for a long period of time?Have they checked her electrolytes?What does your mums complexion look like?Is it healthy or sallow and lifeless?Is her skin dry?Are her limbs generally cold and/or does she feel cold often?Any runny nose or other cold like symptoms?In Traditional Chinese Medicine it is recommended to eat plain white rice while a person has diarrhea as this will firm up the stools and sooth the stomach.Also its recommended to drink sufficient liquids like vegetable broth for example to avoid dehydration.It would be a good idea though to consult with her primary doctor regarding this first to make sure rice etc is suitable for your mothers situation.I just asked a nurse and doctor about your mums symptoms and this is what they said:The nurse for some reason suggested your mum see an endocrinologist to check for addisons disease and she inquired whether your mum was still having menstrual cycle and did these symptoms only happen when she used tamponsThe Md recommended that she be tested to rule out Cryptosporidium.He said "This is an atypical pathogen that would often be missed. Most people would have a single severe bout of diarrhea and their immune system would clear the infection.Second idea on this problem is >>> Does she have well water? City water? It sounds as if she is being re-exposed to something toxic to her colon. This might be infection or other . I would make sure that atypical pathogens be considered as some may require specific testing.She has probably had stool examined times three samples for ova and parasites. If not this should be done. I would advise her to not drink her tap water for now and have it tested. Giardia is a parasitic infection sometimes associated with springs or well water.I think her passing out and lips turning blue and episodes of renal failure are all due to hypovolemic shock. It can harm all the organs to have the blood pressure drop too low. Her cardiac output was probably inadequate when her lips turned blue.I think the CAUSE of the COLITIS will be the key.Consider consulting an infectious disease specialist.Testing for a food allergy would be prudent if not done. I doubt this is the cause but I would favor ruling it out. There are blood panels to test for antibodies against the most common food allergies.(I would expect more gastritis and vomiting typically with this...)"Thank you very much for your replay. There is never any unprocessed food in her stool but there is a lot of mucus. She does have some burning with the diahrrhea. She did take tamoxifen for 5 years after the cancer and also chemo. She has the chemo through an IV and not a port so now she is a very hard stick. She has not eaten any shellfish and normally does not. Her Gi did tell her to only eat dark meat 1 to 2 times a week. She has been doing this but we do not see much of a change. I am not sure if her electrolytes have been tested or not. I will find that out though. Would that cause her to be more dehydrated if they were low?Her complection is not the same it use to be. She does have very dry skin. She also has dark and red spots on her body. Some of them usually show up after laying out in the sun. We thought they may be sun spots or from ageing. Her limbs are cold a lot and so is she. She also gets a cold a lot. She gets them more than the normal person. She usually gets a sinus infection, cough, or cold. The last time she had a "spell" she had went to the doctor the day before for a sinus inf. and recieved a z-pack. Her blood pressure was fine at the doctors office. She has had her stool test many times. Every time she is in the hospital they check it and her urine for 24 hours. She is on city water and has been all of her life. She moved into the house she lives in now about 7 years ago and this did not start then. She has been tested for food allergies and has none. She does have allergies though. She has been feeling bad again and having diarrhea all week. We are not sure if she is going to have a spell soon or not. She did go see her GI yesterday about this and he said there is nothing he can do but her blood pressure was high. It was 160/102. This worries me to with her having a stoke already. Her blood pressure goes up and down so much. Thanks again for your replay. I am going to look into Addisons Disease some more. I think that may sound like what she has. I am going to talk to her about seeing an endocrinologist.
    Anonymous 42789 Replies
    • September 11, 2009
    • 05:53 PM
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  • I'm sorry about your mom. My mom has been sick for over a year. They just found out she has Celiac. Have they checked your mom for that? Some of the symtoms are the same as my mother. Good luck.
    Anonymous 42789 Replies
    • October 15, 2009
    • 05:21 PM
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