Discussions By Condition: I cannot get a diagnosis.

It's a mystery until we solve it...

Posted In: I cannot get a diagnosis. 166 Replies
  • Posted By: mommy cat
  • March 26, 2007
  • 00:59 PM

For the past 3 years I have been experiencing severe abdominal cramps, watery, explosive diarrhea, extreme facial flushing, almost fainting and at times, vomiting. I was diagnosed with carcinoid syndome and went to Roswell Park in Buffalo NY. No answers. I am now back home and going to see an ENT Dr. due to the fact that on Friday I was diagnosed with a "cyst-like" area on my thyroid. I have done research and have found out that medullary thyroid carcinoma causes the same symptoms as carcinoid syndrome. I've been at this for 6 months and have no more answers than when I began this journey. If anyone knows about these symptoms...please help. Your input would be greatly appreciated and may even save my life. mommy cat:confused:

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  • mommy cat here...anyone having same symptoms, please check out www.ahummingbirdsguide.com I have recently found this, spent 6 hours in ER Friday night having stroke-like symptoms. All of my symptoms are there. Even things I didn't pay so much attention to. It's been hard to get diagnosed due to the fact that I have so many seemingly unrelated symptoms. Please note this is viral, contagious (even respiratory), neurological and affects several different body systems. Onset of symptoms may be sudden as in Flu-like symptoms or they may be gradual and increase in intensity or new symptoms showing up all the time. ME sufferers are not hypochondriacs nor do we all suffer mental issues that make us mentally ill or attention seekers. Teachers, students and healthcare workers run a high risk. I've been in healthcare industry for 21 years. I am 38 years old. my e-mail address is bentnoteblues@netscape.net for anyone interested in contacting me for more information regarding this issue...Be Well...mommy cat
    mommy cat 1654 Replies Flag this Response
  • Everyone...Please excuse the fact that you will see my name everywhere on this site...When I found info re: ME, I decided to check this site and see how many others are having ME symptoms...Low and behold,HUNDREDS OF YOU ARE. Please do not think I'm crazy or enjoy giving cookie cutter responses to many of you regarding the hummingbird site. It's just very coincidental that hundreds of people are being accused of having psych problems and of being a hypochondriac. It is also a coincidence that so many are having ME symptoms from memory problems to body temperature to nightsweats, gi difficulty, hormonal, respiratory, immune and so on...SEVERAL have been diagnosed with Fibromyalgia, Lupus, Chronic fatigue and so on...If you are one of the many who fall into this category...please visit www.ahummingbirdsguide.com if you have ME, the lightbulb will click as soon as you read the extensive list of systems. I have been a nurse for a long time and would love to help someone/anyone from going through what I've been through for the past 4 years, unable, like so many of you, to get a correct diagnosis...I was scheduled for an appt on June 21st with my Dr. I called this am after 6 hrs in ER Fri night...I will be going Wed am at 10:15...I've never gotten in so fast...gee...I wonder why?????????????????????? Thank you and God Bless every one of you...I hope you all find peace...mommy cat
    mommy cat 1654 Replies Flag this Response
  • For the past 3 years I have been experiencing severe abdominal cramps, watery, explosive diarrhea, extreme facial flushing, almost fainting and at times, vomiting. I was diagnosed with carcinoid syndome and went to Roswell Park in Buffalo NY. No answers. I am now back home and going to see an ENT Dr. due to the fact that on Friday I was diagnosed with a "cyst-like" area on my thyroid. I have done research and have found out that medullary thyroid carcinoma causes the same symptoms as carcinoid syndrome. I've been at this for 6 months and have no more answers than when I began this journey. If anyone knows about these symptoms...please help. Your input would be greatly appreciated and may even save my life. mommy cat:confused:I really don't have any input, except to tell you to try and stay as calm as you can - I know not easy. All of us who have been going through something like this are rightfully anxious - who wouldn't be!! However, this anxiety also causes us to jump to worst case scenarios. The doctors said "cyst-like" - NOT tumor. I've found that doctors usually don't mince words at times like these, so believe it. You might also try to keep in mind that you may have finally found the answer you've been looking for. Thyroid problems can cause a multitude of symptoms. I know, because I've had them...and got back to normal after being treated. Lastly, even worst case scenario (which I think you are jumping the gun here) and you have thyroid cancer, I know a woman who had that over 25 years ago (when treatment wasn't half as effective as it is now) and she is fine now. Good luck. Hope you are feeling better SOON.Jean
    Jean Marie 38 Replies Flag this Response
  • For anyone who has gone to the hummingbird site...if you would like a clearer list of ME symptoms do this...google mama.com enter Myalgic Encephalomyelitis when page comes up, to the R under refine search it says symptoms of Myalgic Encephalomyelitis click it...scroll down to #4- Fatigueanswers.com there you will find a list of sx that is much easier to read than the hummingbird site...Good Luck and let me know what you think...mommy cat
    mommy cat 1654 Replies Flag this Response
  • You might also look up mercury poisoning (from dental fillings). It's another controversial diagnosis. However, I KNOW someone who was terribly sick for 5 years...ended up quitting her job, could barely move - she was very sick. Had her fillings replaced and within a few months was fine.http://curezone.com/dental/mercury_symptoms.asp
    Jean Marie 38 Replies Flag this Response
  • Hi Mommy Cat, I was wondering what the latest was that the Dr. said? Did he think ME was a possibility? I guess I am confused as to the thyroid cyst and the progressioin of thinking it is ME. Is it ME and did the Dr. say it is ME? Also, I read Jean Marie's comments on thyroid cancer, I know 2 women (late 50's) that had this...and are fine. I have heard it is one of the easiest cancers to cure. But, back to the ME, thing....please let us know what the Dr. said! Thanks! There are times when I wish there was some sort of diagnositic tool that could scan the body and figure out what is wrong! Take care, Val
    Anonymous 42789 Replies Flag this Response
  • Mommy cat, here is something you may find interesting in general, concerning "Morgellons" disease. Everyone claimed it to be delusions, but now the American Academy of Dermatology published this:www.eblue.org/article/PIIS0190962207001958/fulltext They now say: "To anyone willing to look and listen, all patients with Morgellons carry elevated laboratory proinflammatory markers, elevated insulin levels, and verifiable serologic evidence of 3 bacterial pathogens. They also show easily found physical markers such as peripheral neuropathy, delayed capillary refill, abnormal Romberg's sign, decreased body temperature, and tachycardia. Most importantly they will improve, and most recover on antibiotics directed at the above pathogens." The symptoms are MOST interesting -www.rense.com/general74/morg4.htm Many more articles here -www.morgellonshope.com/content/category/1/21/74/ You may also want to know the cause behind it. I have plenty reason to take this seriously:www.zetatalk.com/index/blog0712.htm
    Curly Stooge 319 Replies Flag this Response
  • To anyone interested...I took ME info to Dr today...He listened and he believes me...He is doing testing on the information I took to him regarding this...He also said that this certainly may be a possibility...He also said he was going to look at this website and see how many people have ME sx...I told him it was easy...just look at where mommy cat has posted...I know the sx when I see them...I've read enough about them...not to mention, I have the majority of them...If anyone is having seemingly unrelated symptoms and cannot get a diagnosis...PLEASE check out the site I have referenced...If the site is too confusing, google Myalgic Encephalomyelitis...write down every sx you have...You do not need every sx to have this disease...Good Luck to all of you and BE WELL...mommy cat
    mommy cat 1654 Replies Flag this Response
  • Val...just a post note...I'm thinking the thyroid cyst at this point is not the issue...neither is the pineal cyst on my spine and the whole lymphnode thing...well, that goes with ME...another reason the doc is taking me seriously...Feel free to ask any questions, I have no problem keeping folks posted on what's going on with me...I know there are a ton of people here with these sx and maybe by learning what my doc is doing for me, it will help others as well...God Bless Val and let me know if you think ME is a possibility with you....Unfortunately we don't have the star-trek scans available yet lol keep in touch...momma
    mommy cat 1654 Replies Flag this Response
  • To anyone interested...I took ME info to Dr today...He listened and he believes me...He is doing testing on the information I took to him regarding this...He also said that this certainly may be a possibility...He also said he was going to look at this website and see how many people have ME sx...I told him it was easy...just look at where mommy cat has posted...I know the sx when I see them...I've read enough about them...not to mention, I have the majority of them...If anyone is having seemingly unrelated symptoms and cannot get a diagnosis...PLEASE check out the site I have referenced...If the site is too confusing, google Myalgic Encephalomyelitis...write down every sx you have...You do not need every sx to have this disease...Good Luck to all of you and BE WELL...mommy catmommy cat, just what information did you give him that made him believe it a possibility? Whenever I take "literature" to a doc, they just blow me off.:(
    Jean Marie 38 Replies Flag this Response
  • First I printed a time line of very noticable symptoms, I took copies of every test urine, blood, CT scans, MRI's and so on...I printed my ME symptoms which is often confused with Carcinoid syndrome, Lupus, fibromyalgia, MS, chronic fatigue(and it's negative stigma) Mono, Epstein Barr and so on... I printed the tests that need to be completed to determine ME as diagnosis...2 of which I have already confirmed...Low Potassium and increased lymphocytes...I also gave him the web address to this forum and said he should take a look for himself...I also printed and gave him his own copy of the www.ahummingbirdsguide.com for his own reference...I told him of the numbers of people on this site with ME symptoms is staggering...As I have tried to tell anyone who would listen to look at the site...I had bloodwork drawn this am for the immunological testing for ME...I am glad to share as much useful information with all of you as I can...I'm here...mommy cat
    mommy cat 1654 Replies Flag this Response
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  • First I printed a time line of very noticable symptoms, I took copies of every test urine, blood, CT scans, MRI's and so on...I printed my ME symptoms which is often confused with Carcinoid syndrome, Lupus, fibromyalgia, MS, chronic fatigue(and it's negative stigma) Mono, Epstein Barr and so on... I printed the tests that need to be completed to determine ME as diagnosis...2 of which I have already confirmed...Low Potassium and increased lymphocytes...I also gave him the web address to this forum and said he should take a look for himself...I also printed and gave him his own copy of the www.ahummingbirdsguide.com for his own reference...I told him of the numbers of people on this site with ME symptoms is staggering...As I have tried to tell anyone who would listen to look at the site...I had bloodwork drawn this am for the immunological testing for ME...I am glad to share as much useful information with all of you as I can...I'm here...mommy cat I hope you don't mind all of us watching (and learning) as you go through this process, mommy cat. I'm wondering what kind of doctor you are seeing? A GP, a neurologist, etc.. What confuses me is that there seems to be endless tests that can be used to determine ME. However, from what I can gather the most significant tests have to do with the Central Nervous System - From Hummingbird site:"If the SPECT is normal, I often repeat it along with xenon SPECT. If the brain scans remain normal, I conclude that it is unlikely to be M.E.’ (Hyde, 2003) ‘The one essential characteristic of M.E. is acquired CNS dysfunction, chronic fatigue" And then there's this -"Most commonly, an intolerance to particular levels of physical and cognitive activity are the primary features of the illness; the diagnosis of Myalgic Encephalomyelitis should never be made without these features being present.)" After doing all this research, mommy cat, it seems like your cognitive ability must be exceptionally good.:) Please do not confuse my questions with skeptcism. I am not saying you are not onto something...I'm just trying to understand. I truly hope you continue to explore this possibilty and share with us. Maybe you will solve "the great mystery" that we are all experiencing in so many forms. Good luck. Jean
    Jean Marie 38 Replies Flag this Response
  • My dearest Jean...I have been a nurse for 15 years...straight A student, photographic memory(my friends are jealous haha) I learn fast and retain a lot of info...However, I have noticed things like not being able to keep my train of thought from the bottom to the top of the stairs...I could not think of the word turpentine the other day...I could tell you what color it was, what it smelled like and the fact that the word began with a 'T"..I cried...I've experienced this frequently, recently...I've had stroke-like sx and almost every sx of ME for the past year...My friends and family were beginning to question my mental status or believe that I was a hypochondriac. It was so difficult getting a diagnosis because none of my symptoms followed a pattern...I've been to endocrinologists, GI specialists, ENT, General practicioners, Nurse practicioners and now I'm seeing a doctor of internal medicine...But for the Grace of God, my friend referred me to him after we both realized she is having sx too, as well as her sister and her mother...My mother, my aunt, my cousin and myself all have over 30 sx of this...They never thought much of it because none of the sx had rhyme or reason
    Anonymous 42789 Replies Flag this Response
  • So far I have heard from people in several states...There are far too many coincidences here...so many people with so many undiagnosed symptoms...I believe that when there was an outbreak in the 80's, when they renamed the disease Chronic Fatigue Syndrome (The CDC, even though they are not doctors) there were many doctors who assumed everyone and their grandmother would hop on the gravy train...They didn't take patients seriously...I think that train of thought has remained...CFS has a very negative stigma attached to it and there are many misconceptions about the disease that I, myself had believed until I did the research...So far I'm maintaining, but I feel myself decline daily. Things that used to be simple have become complex and sometimes impossible...my brain gets foggy, short-term memory, concentration, things like that. Not to mention physical sx...diarrhea, flushing, stroke-like episodes...It's very scary being a nurse and having sx that you have witnessed others having in the past(actual strokes) I've seen 3 patients in my career have them...it's not pretty and neither was I in Hosp for 6 hrs on Fri...Thank you for your concern, Jean and the whole world can pop some popcorn and get a ringside seat to this one. I always felt that I was meant for something wonderful...Perhaps this is my chance no matter how awful the subject matter really is...Glad to help anyone in anyway I can...Even as a guinea pig...God Bless Jean...mommy cat
    mommy cat 1654 Replies Flag this Response
  • Jean...just a bit more... as far as the physical stuff...If I over do it, to the slighest degree I have severe sx...typing is OK if I don't go too fast...Also, please understand that my symptoms appear, disappear and reappear..ex I do not have diarrhea/flushing everyday, but when I do, which is frequent, it is severe. Some days I have headaches, other days I don't. I've had stroke-like sx 3 times in 7 weeks and so on...That's another reason it's so hard to get diagnosed... Jean, just look at the headings of peoples posts on this site...most say the same thing...debilitating, help, dr don't know, someon help, mystery ect...read these posts, look at ME page...it's all there....May you all find peace and God Bless...until tomorrow, mommy cat
    mommy cat 1654 Replies Flag this Response
  • Fri am update...this am I contacted the CDC (centers for disease control) re possible pandemic outbreak of ME...They advised me to contact my local health dept...which I just did...I'm waiting for a call back from an Epidemiologist who I will explain my situation, as well as the situation of the hundreds of people listed here as well as this website for him to look at himself...PLEASE check out Myalgic Encephalomyelitis if you are having several, severe or even many mild sx related to this disease...God Bless every one of you...mommy cat
    mommy cat 1654 Replies Flag this Response
  • The flu, flue shots, Mono, Lyme,Candida, Syphillis, Vitamin B complex deficiency or just poorly bad dietary habits can also be taken in consideration for most of the people in this message board.As you are a bit familiar with my case, I should actually mention you that back in the 90's I did have brain swelling and a bunch of unidentifiable infections after a round of vaccines. I recovered after 2 months. I was hospitalized for one day only. But it was pretty serious. It was not the flu and it was not bacterial meningitis, actually they ran blood test every 10 minutes for a whole day. They could not find out what almost killed me. After that I developed acid reflux, migraines, condritis, pain in my knees when I wore hills, seafood allergies, etc. I think the vaccines have a huge part on that whole breaking of my nervous and immune system.In fact, there is plenty of research pointing at vaccines at the triggers of many degenerative conditions.Most recently when I got sick- I had strep in my body, and mold in my lungs and my house HVAC System was infected with mold. So it could easily be called ME or anything, but the fact is it is not untreatable- it is untreatable while you don't research your environment or your medical history/ vaccination card.If flu shots can be linked to Guillen -Barre , anything is possible.I even blame the benadryl and the Non steroidal pain killers for my condition. Those things are actually proven to degenerate the body chemistry and internal communications.I wish you success.The 29 Year Old Fruit.:Dps: I forgot to mention that the entire time I was sick during the late 90's, I was married to a Psychotic person- so my emotions were never really balanced.I got divorced and I was never sick again, until recently- when I was taken to a Pentecostal cult w/o my consent and someone smacked me on the forehead with the "Holy Spirit"- after that I became sicker and sicker and my emotions went unbalanced again.Yeah- that's a mystery!!!!
    Eatafruit78 960 Replies Flag this Response
  • Dear Eatafruit...wow!! what a story...I believe every word you wrote...it's all true...several of my symptoms could and probably are related to my immediate surroundings...makes complete sense. Thank you for some more info to assist me in my journey to wellness...None of it goes unappreciated...mommy cat
    mommy cat 1654 Replies Flag this Response
  • Thank you again Eatafruit78 for that tip! I should have listened better to my late aunt, she warned about vaccinations. Mommy cat - here is another cause for ME, serious. If you could read both pages in full, that should be enough: www.drcarley.com and http://members.aol.com/doctorrmosk/articles/hidden.htm - consider how the problems increased for young people as the vaccinations increased. They also explain there about the Spanish Flu of 1918, that killed thousands here as well. My great-grandmother was a nurse at the time and had a very bad heart, yet she went around helping many households (all the doctors had died). She said that she won't survive anyway and might as well help others, while she lasts. But she never got this "flu" - as she had never been vaccinated for anything. A year ago my Mom got a very severe excema all over her body. A wound nurse is even now working on it. This was after a flu shot! Oldies here have been advised to get vaccinated. So no need to inform your CDC, as they planned and applied the whole disease!:mad:
    Curly Stooge 319 Replies Flag this Response
  • Dear Momma and Curly- you are both very welcome.I was just telling my doctor about you all - how great is to have support and how we learn so much from each other.Who says we have to be alone? We are not islands.****Curly, sorry about your Mom- there must be a way that she can experience relief. I'll pray for her.XOXOEatafruit78/
    Eatafruit78 960 Replies Flag this Response
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