Discussions By Condition: Medical Errors

anxiety misdiagnosed. finally found my own answer.

Posted In: Medical Errors 16 Replies
  • Posted By: sweetstrawberry
  • May 26, 2007
  • 11:26 AM

so for um. for a year or more i've been experiencing symptoms related to anxiety/panic attacks. in that time, i've probably seen about 8 doctors, 2 family doctors, have been in the hospital, 1 specialist, 2 neurologists, and the redimed visits. all of these doctors chalked it up to a 'mental disorder' and told me to go to talk therapy. the specialist i was seeing told me i either go to talk therapy or she won't see me again- i knew that fixing this problem that came completely out of the blue with no warning signs in childhood or family history should be easier than a damned 30 week program with some 'talk doctor.'(ive been to them before, there's nothing wrong with me i promise haha) and besides, when i was seeing the specialist, she 'diagnosed' me with every anxiety disorder there is- generalized anxiety disorder, social anxiety disorder, agoraphobia (fear of open spaces), depression, you name it. i didn't need a laundry list of new 'diseases' i had, i needed the reason behind it. i had real phsyical symptoms, other symptoms were obsessive paranoia, mood changes, behavior that was totally out of character, anger/violent behavior, worrying, paralyzing fear (thunderstorms, and a train going by were the worst for me), over analyzing. but the constant chest pain, the headaches, restless leg syndrome, the sudden panic attacks which were ranging from 4 a week to three times a day (it itself is just a ball of symptoms, high blood pressure, high heart rate, increased respirations)- it couldn't have just... come out of nowhere. and on top of all this, i started to not be able to tell which was a side effect from the medications and which was a symptom. i woke up every morning and felt like i had to evaluate myself to make sure nothing had changed- how's my heart rate... looking back, i can see how i was percieved as losing my mind. but i shouldn't have been treated that way.

so after i was dismissed from the specialist, i returned to my family doctor only for him to tell me he won't see me anymore until he knows for sure that i'm not seeing the specialist... as if i'm going to con him into writing the same script that she is? i felt like this new 'mental disorder' made me seem less intelligent, less trustworthy, more like i had psychosis... i don't know. doctors treated me like absolute... judgemental *****s. i refused to go back to him after he talked to the specialist because 1) i didnt need a doctor who didn't trust me and 2) he called me a drug addict and later apologized and said he was wrong in his accusation. so... after being denied by two doctors, i felt like the world was against me and on top of that, it was my fault because it was an emotional/mental *curable* disorder- something i should be able to just... deal with my problems, be a stronger willed person... but the problem was, i've always been a strong willed person, which is why anxiety was so out of character, so one night it disappeared? i was cut off from medicines that caused sudden withdrawls ontop of a return in symptoms and i still didn't have an answer.

a few days ago... i reached the breaking point, i had been up all night from chest pain (heart feels like its going to explode), and i realized that my symptoms had gotten worse since my neurologist upped my dose of my migraine preventative medication. so... i did some research on topamax. then i thought about how long i've been on the drug, and how long i've had these symptoms. why didn't any of the doctors stop me and say this to me? the doctors who 'treated' me would hand me some stupid perscription for a benzo that wouldn't get me past the next weekend, tell me to see a counselor, and send me on my way. i found tons of websites saying topamax caused anxiety, nervousness, headaches (even though its a preventative)... mood swings; (it even went as far as to cause psychosis in some people ) everything i was experiencing (and i told every doctor that i was on topamax). i found forums where 600+ people said it was so horrible, some after only being on it for a few weeks or a month or two, they had to discontinue it, and i was on it for a year. i lost 50 pounds on it, (20yr old female, 5'7, 115lbs) i constantly felt as if i was spaced out...

anyways. on to the good news. i'm off of topamax for my fourth day today from 300mg and everything is much improved. i'm hoping once it gets out of my system, all of everything will go away. i still have some of the symptoms, but they're much... more tolerable now. i'm braver- (ha) i'm more self confident, it's like a complete overhaul. i haven't had a panic attack since, either. i guess my only advice is listen to your intuition, atleast once in a while ;) . if you feel something isn't right- find out. i feel as if i lost a year of my life to anxiety disorder because it essentially took over my life, and i allowed it for awhile, but i could have lost more time had i sat around and let it take control. it took me a month after being dismissed from my doctors for me to find out what was wrong, and trust me... they will get a phone call when i'm symptom-free :)

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16 Replies:

  • i was just recently put on topamax and have been having some of the same symptoms you had did you have any pulsating feelings, warm flushing sensations warm tingling sensations.I also am having nervousness and anxious feelings anb my ibs is going a little crazy.I would like to know where you found your forums on topamax. Thanks
    Anonymous 42,789 Replies Flag this Response
  • i think using salvia is a one of the ways of anxiety control
    stbalaji2u 7 Replies Flag this Response
  • For over 2 years I have been experiencing 'blackouts' accompanied by an aura! I even experienced a full blown seizure while about 7 months pregnant. I have been to several doctors, neurologist and psychologist with no solid answer to what was causing my experiences. I took the initiative and had a CT scan, EEG and hormone tests for potassium and cortisol. Yet no answers. Although my cortisol level was in the lower half of the 'normal' range on an unstressed morning when the test was taken, the doctors insisted that my cortisol level was normal. I was advised to take Topamax in an effort to control the blackouts but was very skeptical of taking anything that would affect me mentally. After taking depakote and phenobarbatol and not liking the effects of the mood swings, depression and hallucinations, I was skeptical. I just wanted to get better! But why was I being medicated when there was not a proper diagnosis! I am trying to find out what is causing me to blackout! My next step is an MRI, but I would appreciate any suggestions please!
    Anonymous 42,789 Replies
    • September 7, 2009
    • 04:11 PM
    • 0
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  • For over 2 years I have been experiencing 'blackouts' accompanied by an aura! I even experienced a full blown seizure while about 7 months pregnant. I have been to several doctors, neurologist and psychologist with no solid answer to what was causing my experiences. I took the initiative and had a CT scan, EEG and hormone tests for potassium and cortisol. Yet no answers. Although my cortisol level was in the lower half of the 'normal' range on an unstressed morning when the test was taken, the doctors insisted that my cortisol level was normal. I was advised to take Topamax in an effort to control the blackouts but was very skeptical of taking anything that would affect me mentally. After taking depakote and phenobarbatol and not liking the effects of the mood swings, depression and hallucinations, I was skeptical. I just wanted to get better! But why was I being medicated when there was not a proper diagnosis! I am trying to find out what is causing me to blackout! My next step is an MRI, but I would appreciate any suggestions please! If 'TOPOAMAX' or anyother man made drugs have so many negative effects, how in the ***l CDC had approved these drugs to be in the market? Dont they have responsibility to visit these Forums and get straight answers from patients? Oh! CDC is just another govt. agency.Garla Arjuna.
    PArjuna 43 Replies
    • September 13, 2009
    • 03:37 AM
    • 0
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  • For over 2 years I have been experiencing 'blackouts' accompanied by an aura! I even experienced a full blown seizure while about 7 months pregnant. I have been to several doctors, neurologist and psychologist with no solid answer to what was causing my experiences. I took the initiative and had a CT scan, EEG and hormone tests for potassium and cortisol. Yet no answers. Although my cortisol level was in the lower half of the 'normal' range on an unstressed morning when the test was taken, the doctors insisted that my cortisol level was normal. I was advised to take Topamax in an effort to control the blackouts but was very skeptical of taking anything that would affect me mentally. After taking depakote and phenobarbatol and not liking the effects of the mood swings, depression and hallucinations, I was skeptical. I just wanted to get better! But why was I being medicated when there was not a proper diagnosis! I am trying to find out what is causing me to blackout! My next step is an MRI, but I would appreciate any suggestions please!I am glad you are better off of the topomax.. but being pregnant as you are, I would INSIST on a full pituitary work up. The pituitary is very vulnerable during pregnancy as it is enlarged, preparing for child birth and breast feeding. Could be that you are having effects of hypopit.
    Anonymous 42,789 Replies
    • September 24, 2009
    • 10:01 PM
    • 0
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  • I was misdiagnosed with bipolar disorder. They put me on something like Topamax along with a million other things. They use Topamax for several different "diseases" including bipolar disorder, migraines and I believe seizures as you probably already knew. Long story short...I ended up having 24/7 panic attacks for 2 months all the while my doctors kept saying the same thing. It's psychological, you are hiding from unresolved issues and all the usual bs. I ended up in a psych ward for a month because I was going to kill myself. I couldn't take it anymore. The anxiety was unbearable, it was ALL the time and I had insomnia on top of it. Turns out it was all because of the medication. They started taking me off some of the meds I was on and the anxiety went away for good. In the hospital they gave me a beta blocker heart medication also used for anxiety called propranolol and that was the temporary fix until I got off of the medication that was actually causing the anxiety.I completely understand what you have been through!! You know your body better than any doctor so never doubt your own instincts! I'm glad that you figured out what was going on long before it ever got as severe as mine did!!Good Luck!!
    Krystal D 26 Replies
    • September 25, 2009
    • 05:44 AM
    • 0
    Flag this Response
  • If 'TOPOAMAX' or anyother man made drugs have so many negative effects, how in the ***l CDC had approved these drugs to be in the market? Dont they have responsibility to visit these Forums and get straight answers from patients? Oh! CDC is just another govt. agency.Garla Arjuna.Garla Arjuna...let me let you in on a little secret that most people don't know. I used to be a biomedical researcher. Here is how not all but a lot of these wonderful drugs end up on the market. It all starts with drug trials that the FDA relies on to approve medications, that they work and give "accurate" information on what the possible side effects may be so we can all be "informed" patients. The drug company pays a researcher (usually an M.D.) to run their drug trial...then the drug company takes the "results" of that drug trial, ghost writes the paper that is then published about how wildly successful the drug is under the researcher's name and everybody is happy. The doctor gets money and a publication, the drug company gets their approval and a glowing recommendation for their drug. Or another way they do it that is somewhat less shady is this...they do their trial on patients who are in a psychiatric ward. Now in a psych ward you don't have what you wold consider your "normal" population of people who are going to be taking this medication. Also, in a psych ward things are much more controlled and in most, patients are not allowed to smoke. Now that's all fine and dandy as long as you don't consider the fact that for a drug like oh say Zyprexa smoking cuts its efficacy by 50%. About 80% of mental patients smoke. This number can be higher or lower depending on the disease the patient has. So while a drug like Zyprexa might work great in a controlled setting, once those patients are released and go back to their normal activities like smoking...all of a sudden the medication doesn't work anymore. Now none of this is reported in their results nor is it necessarily stated in any label attached to the medication that you receive and most doctors either don't know about this because they haven't thoroughly read the Physician's Information sheet that comes with these medications or don't talk about it with their patients. This whole illusion we have that once a drug has been cleared by the FDA it is safe and ready for consumption by the general population is just that...an illusion. And no I am not a crazy conspiracy theorist. I have a bachelor's degree in microbiology and before I got sick worked as a researcher. I watched this happen repeatedly, found it extremely disturbing and was told not to worry about it. It was industry standard and in the end best for the patient.And please don't think I am saying Zyprexa is a good/safe drug. It is not. It has tons of possible negative side effects. All of these what I consider "cross-over" drugs...one drug that is used for multiple purposes such as psychiatric treatment, seizure disorders, migraines, etc... are very dangerous and massively over prescribed! Not that they don't work fine and are effective for some people but no one ever tells you "oh by the way if you take this it could actually give you (if you are female) a disease called polycystic ovary syndrome or diabetes or liver damage or massive anxiety. Now some of these`things are in the little warning brochures that are very technical and no one reads but generally if you do come upon this and approach your doctor with your concern you will be told something along the lines of "they have to report anything that happens during the drug trials and this happens in the general population anyway and is not necessarily linked to the drug itself." True but VERY misleading. These drugs can and do cause these conditions and should only be prescribed in my opinion after careful consideration by the doctor and thorough consultation with the patient so they know exactly what they are putting in their body and what can happen and what to be looking for as warning signs for such problems. Something that seldom happens.
    Krystal D 26 Replies
    • September 25, 2009
    • 05:06 PM
    • 0
    Flag this Response
  • so for um. for a year or more i've been experiencing symptoms related to anxiety/panic attacks. in that time, i've probably seen about 8 doctors, 2 family doctors, have been in the hospital, 1 specialist, 2 neurologists, and the redimed visits. all of these doctors chalked it up to a 'mental disorder' and told me to go to talk therapy. the specialist i was seeing told me i either go to talk therapy or she won't see me again- i knew that fixing this problem that came completely out of the blue with no warning signs in childhood or family history should be easier than a damned 30 week program with some 'talk doctor.'(ive been to them before, there's nothing wrong with me i promise haha) and besides, when i was seeing the specialist, she 'diagnosed' me with every anxiety disorder there is- generalized anxiety disorder, social anxiety disorder, agoraphobia (fear of open spaces), depression, you name it. i didn't need a laundry list of new 'diseases' i had, i needed the reason behind it. i had real phsyical symptoms, other symptoms were obsessive paranoia, mood changes, behavior that was totally out of character, anger/violent behavior, worrying, paralyzing fear (thunderstorms, and a train going by were the worst for me), over analyzing. but the constant chest pain, the headaches, restless leg syndrome, the sudden panic attacks which were ranging from 4 a week to three times a day (it itself is just a ball of symptoms, high blood pressure, high heart rate, increased respirations)- it couldn't have just... come out of nowhere. and on top of all this, i started to not be able to tell which was a side effect from the medications and which was a symptom. i woke up every morning and felt like i had to evaluate myself to make sure nothing had changed- how's my heart rate... looking back, i can see how i was percieved as losing my mind. but i shouldn't have been treated that way. so after i was dismissed from the specialist, i returned to my family doctor only for him to tell me he won't see me anymore until he knows for sure that i'm not seeing the specialist... as if i'm going to con him into writing the same script that she is? i felt like this new 'mental disorder' made me seem less intelligent, less trustworthy, more like i had psychosis... i don't know. doctors treated me like absolute... judgemental *****s. i refused to go back to him after he talked to the specialist because 1) i didnt need a doctor who didn't trust me and 2) he called me a drug addict and later apologized and said he was wrong in his accusation. so... after being denied by two doctors, i felt like the world was against me and on top of that, it was my fault because it was an emotional/mental *curable* disorder- something i should be able to just... deal with my problems, be a stronger willed person... but the problem was, i've always been a strong willed person, which is why anxiety was so out of character, so one night it disappeared? i was cut off from medicines that caused sudden withdrawls ontop of a return in symptoms and i still didn't have an answer. a few days ago... i reached the breaking point, i had been up all night from chest pain (heart feels like its going to explode), and i realized that my symptoms had gotten worse since my neurologist upped my dose of my migraine preventative medication. so... i did some research on topamax. then i thought about how long i've been on the drug, and how long i've had these symptoms. why didn't any of the doctors stop me and say this to me? the doctors who 'treated' me would hand me some stupid perscription for a benzo that wouldn't get me past the next weekend, tell me to see a counselor, and send me on my way. i found tons of websites saying topamax caused anxiety, nervousness, headaches (even though its a preventative)... mood swings; (it even went as far as to cause psychosis in some people ) everything i was experiencing (and i told every doctor that i was on topamax). i found forums where 600+ people said it was so horrible, some after only being on it for a few weeks or a month or two, they had to discontinue it, and i was on it for a year. i lost 50 pounds on it, (20yr old female, 5'7, 115lbs) i constantly felt as if i was spaced out... anyways. on to the good news. i'm off of topamax for my fourth day today from 300mg and everything is much improved. i'm hoping once it gets out of my system, all of everything will go away. i still have some of the symptoms, but they're much... more tolerable now. i'm braver- (ha) i'm more self confident, it's like a complete overhaul. i haven't had a panic attack since, either. i guess my only advice is listen to your intuition, atleast once in a while ;) . if you feel something isn't right- find out. i feel as if i lost a year of my life to anxiety disorder because it essentially took over my life, and i allowed it for awhile, but i could have lost more time had i sat around and let it take control. it took me a month after being dismissed from my doctors for me to find out what was wrong, and trust me... they will get a phone call when i'm symptom-free :)Ahh man and I thought I had the corner on calling doctors judgmental *****s. I know EXACTLY what you mean!!!I was on a drug like Topamax and started having panic attacks which I had never had before. I had never even had anxiety before other than the normal anxiety of life. It started slowly but then turned into basically massive anxiety that I would describe as just a 24/7 panic attack. It went on for over 2 months all the while my doctor telling me it was in my head, and my fault because I was hiding from or avoiding or not dealing with matters from my past. I knew I had issues but this was out of the blue and didn't seem right but I trusted my doctor as he was a family friend. After awhile I developed insomnia along with it and sleep was the only solace I had. After more than 2 months of this day in and day out I ended up in a hospital. At the time I was actually on 13 medications much like Topamax. I have a brain tumor but for 8 years was misdiagnosed as having bipolar disorder and my doctor had me on an obscene amount of medications. By everyone's standards even if I was bipolar I was a mild case. Not someone who needed to be on 13 medications...not that I know that anyone needs to be on 13 medications. It took a month in the hospital for them to get me off several of the medications that were driving the anxiety. I had really bad withdrawals coming off each one. In the mean time they gave me what I found to be my life saver at the time...it was actually a heart medication, a beta blocker, that they use to treat anxiety. That was the only thing that stopped the anxiety. I have told a lot of my story in another post on this Community called Brain tumor not Bipolar Disorder. I just wanted to say that I have been there too! And when it comes right down to it...YOU are the one who knows your body best and I am so glad that you were able to figure out what was going on before it ever got as extreme as my situation did. My doctor never would admit that the medications caused anything. In fact he stopped taking my calls altogether. But the proof is empirical...I got off the medications and the anxiety went away. But they can do a really good job of making you doubt yourself!
    Krystal D 26 Replies
    • September 25, 2009
    • 05:42 PM
    • 0
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  • Not to dismiss anyones bad reactions, but for people with uncontrolable epilepsy or migraines, medications like this can be life saving. I stumbled upon this post by accident and take topamax. I get the tingleing and luckily no anxiety/panic, but I have never been prone to these. Also, the dose should be kept as low as it can to control symptoms. 300 is high. And, please be careful stopping suddenly. This can cause seizures, severe psychosis and very dangerous side effects. It needs to be tapered. But, please realize that a lot of people with epilepsy, for example, would really suffer if the CDC took Garla's advice. Think and be considerate please.If 'TOPOAMAX' or anyother man made drugs have so many negative effects, how in the ***l CDC had approved these drugs to be in the market? Dont they have responsibility to visit these Forums and get straight answers from patients? Oh! CDC is just another govt. agency.Garla Arjuna.
    Anonymous 42,789 Replies
    • October 14, 2009
    • 01:23 AM
    • 0
    Flag this Response
  • Not to dismiss anyones bad reactions, but for people with uncontrolable epilepsy or migraines, medications like this can be life saving. I stumbled upon this post by accident and take topamax. I get the tingleing and luckily no anxiety/panic, but I have never been prone to these. Also, the dose should be kept as low as it can to control symptoms. 300 is high. And, please be careful stopping suddenly. This can cause seizures, severe psychosis and very dangerous side effects. It needs to be tapered. But, please realize that a lot of people with epilepsy, for example, would really suffer if the CDC took Garla's advice. Think and be considerate please. I am sorry. I am one of the people who came out strongly against the use of medications like this. Not completely against but that they were over-prescribed. But I would say you have a very valid point. These medications are definitely helpful for some people. My issue was that they are far too often prescribed for psychiatric issues and without full disclosure to the patient as to the risks and possible side effects to the patient. I am glad to hear that the Topamax has been helpful for you!
    Krystal D 26 Replies
    • October 15, 2009
    • 00:10 AM
    • 0
    Flag this Response
  • I am sorry. I am one of the people who came out strongly against the use of medications like this. Not completely against but that they were over-prescribed. But I would say you have a very valid point. These medications are definitely helpful for some people. My issue was that they are far too often prescribed for psychiatric issues and without full disclosure to the patient as to the risks and possible side effects to the patient. I am glad to hear that the Topamax has been helpful for you!Hi Krystal, Thanks to come on strong as you felt others should know the facts. I am sorry I was too late to come to your support. Please read my other replies. It is really courageous to blow the whistle. Please watch this link of a whistle blower....http://www.youtube.com/watch?v=-5uVrbH9lMEGarla ArjunaPArjuna85210@yahoo.com
    PArjuna 43 Replies
    • December 22, 2009
    • 04:59 AM
    • 0
    Flag this Response
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  • I also am on Topomax for some undiagnosed 'simple partial brain seizures' that go along with my monthly female cycle. That NO Dr. seems to have a freaking clue about!!! I don't know whether to call them'blackouts' or not, but i have had them for 10 years since the birth of my 2nd child. I have had every test you could name, neurosurgeon that i see has no clue. I just had the saliva test done, shows no cortisol, so i had such high hopes for that being the answer, AGAIN. Don't think so. The Topomax has helped me, it cut down my episodes from 4-5 days to only 1-2 days/month, HOWEVER i am losing weight and don't need to be, 5 9' and 130 lbs. I feel like i have to explain it to the pharmacist that i really do need this medicine!!! I don't have any wacky side effects from it, no big appetite though. But i am curious if the Topomax is causing the cortisol problem now??? I have been to so many Doctors about the monthly brain seizures/blackouts whatever you want to call them ( i am able to physically do whatever, but i can't verbally continue my thoughts, and if it is a bad one, my arm might swing.....) Does this sound familiar to anyone????For over 2 years I have been experiencing 'blackouts' accompanied by an aura! I even experienced a full blown seizure while about 7 months pregnant. I have been to several doctors, neurologist and psychologist with no solid answer to what was causing my experiences. I took the initiative and had a CT scan, EEG and hormone tests for potassium and cortisol. Yet no answers. Although my cortisol level was in the lower half of the 'normal' range on an unstressed morning when the test was taken, the doctors insisted that my cortisol level was normal. I was advised to take Topamax in an effort to control the blackouts but was very skeptical of taking anything that would affect me mentally. After taking depakote and phenobarbatol and not liking the effects of the mood swings, depression and hallucinations, I was skeptical. I just wanted to get better! But why was I being medicated when there was not a proper diagnosis! I am trying to find out what is causing me to blackout! My next step is an MRI, but I would appreciate any suggestions please!
    Anonymous 42,789 Replies
    • January 2, 2010
    • 01:52 PM
    • 0
    Flag this Response
  • Im 15 turning 16 soon, Male. My family has a history of: Cancer, Blood disorders (my moms dad had a blood disorder where his blood wouldnt clot) and Arthritis So 3 - 4 years ago I started to have symptoms: Stomach pain Joint pain all over the body Muscle pain Bone Pain EXTREME insomnia and sleep deprivation (wont sleep for 4 - 5 days at a time) mysterious swelling that only lasts seconds but is very painful (wrists sometimes will swell to the size of a soda can but will only stay liek that for max 30 seconds) Purple marks under my skin in my thighs and kness (A LOT of them, not one or two, but over 20 id say) Very fast heart rate, that almost never slows down (110 - 130 BPM) Shortness of breath Constant headaches Feeling as if my neck isnt supporting my head constant stiff/sore necklower right side abdomen pain (feeling like somebody is putting pressure on the area) Extremely bad memory loss (cant remember something that happened 5 minutes ago, cant remember what day it is, sometimes I wake up at 8 pm and think its 8 am)" have been tested for: Lyme disease, several times Lupus ANA blood panal Blood count stool sample for parasites urine test for calcium ect.. multiple blood tests for cancer markers countless blood tests looking for inflamation countless blood tests looking for ANYTHING out of the norm 3 MRI's of the head over the years Xrays of my entire body ultrasound of my heart (showing my valves pumping like they are on steroids, opening but not closing completely which was a concern to the tech guy doing the ultrasound) heart monitor test showing arrythmia ALL NEGATIVE (besides the heart altrasound and a EKG + heart monitor test showing arrythmia) (copied from my post in need a diagnosis section) Over the past few days I have started to have new symptoms My toe next to my big toe is swollen only at the tip and EXTREMELY swollen and red right before the nail Hands and feet go numb, swell a lot, and tingle when touching water which is weird because I was diagnosed with Fibromyalgia caused by anxiety... and fibromyalgia doesnt progress like regular diseases.. such as cancer, lupus ect.. so i just wanan rip out my ***n hair I dont know how to tell my family that it is NOT fibromyalgia.. i try to voice my opinion but everybody around me just says that im over reacting and that I dont know what im talking about and talking to doctors about it is impossible. I cant get the courage to do it on my own because I feel if i continue to pursue it they will write me off as crazy.. and then I wont be able to find help in the future....
    NOT Fibro!!! 9 Replies
    • January 7, 2010
    • 09:01 AM
    • 0
    Flag this Response
  • Im 15 turning 16 soon, Male. My family has a history of: Cancer, Blood disorders (my moms dad had a blood disorder where his blood wouldnt clot) and Arthritis So 3 - 4 years ago I started to have symptoms: Stomach pain Joint pain all over the body Muscle pain Bone Pain EXTREME insomnia and sleep deprivation (wont sleep for 4 - 5 days at a time) mysterious swelling that only lasts seconds but is very painful (wrists sometimes will swell to the size of a soda can but will only stay liek that for max 30 seconds) Purple marks under my skin in my thighs and kness (A LOT of them, not one or two, but over 20 id say) Very fast heart rate, that almost never slows down (110 - 130 BPM) Shortness of breath Constant headaches Feeling as if my neck isnt supporting my head constant stiff/sore necklower right side abdomen pain (feeling like somebody is putting pressure on the area) Extremely bad memory loss (cant remember something that happened 5 minutes ago, cant remember what day it is, sometimes I wake up at 8 pm and think its 8 am)" have been tested for: Lyme disease, several times Lupus ANA blood panal Blood count stool sample for parasites urine test for calcium ect.. multiple blood tests for cancer markers countless blood tests looking for inflamation countless blood tests looking for ANYTHING out of the norm 3 MRI's of the head over the years Xrays of my entire body ultrasound of my heart (showing my valves pumping like they are on steroids, opening but not closing completely which was a concern to the tech guy doing the ultrasound) heart monitor test showing arrythmia ALL NEGATIVE (besides the heart altrasound and a EKG + heart monitor test showing arrythmia) (copied from my post in need a diagnosis section) Over the past few days I have started to have new symptoms My toe next to my big toe is swollen only at the tip and EXTREMELY swollen and red right before the nail Hands and feet go numb, swell a lot, and tingle when touching water which is weird because I was diagnosed with Fibromyalgia caused by anxiety... and fibromyalgia doesnt progress like regular diseases.. such as cancer, lupus ect.. so i just wanan rip out my ***n hair I dont know how to tell my family that it is NOT fibromyalgia.. i try to voice my opinion but everybody around me just says that im over reacting and that I dont know what im talking about and talking to doctors about it is impossible. I cant get the courage to do it on my own because I feel if i continue to pursue it they will write me off as crazy.. and then I wont be able to find help in the future.... My heart goes out to you! I know how frustrating and just dehumanizing your situation can be. Its bad enough when it is the doctors treating you like you're just crazy and just seeking attention. It is even more devastating when your friends and family start to do the same!! When you said fibomyalgia caused by anxiety...I was a little surprised. That doesn't really seem to fit. I am NOT a doctor and I know next to nothing about fibromyalgia but I understand why you would disagree with the diagnosis or at the very least have a lot of questions. Unless you are in a very small town I would say not to worry about not being able to get help because you disagree with the doctors. You can always find another doctor and if the one you have now isn't working for you... If you are in a small town I understand how words travels fast and you might have to drive quite a distance to get to another doctor. But what they all too often forget is that WE ARE PAYING THEM for a service. They are supposed to be working for us so you should always be able to voice your doubts and questions! I know that isn't generally the way it works in reality but it should. I wish I had some wonderful answer for you but I am still going through the same thing myself and I just moved to a new area so it is like starting all over and trying to find doctors who will listen. I have had doctors who were caring and listened very well!! You should never be made to feel like you can't say exactly what is on your mind as far as your diagnosis!! I am so sorry you are going through this!! -Krystal
    Krystal D 26 Replies
    • January 7, 2010
    • 01:20 PM
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  • My heart goes out to you! I know how frustrating and just dehumanizing your situation can be. Its bad enough when it is the doctors treating you like you're just crazy and just seeking attention. It is even more devastating when your friends and family start to do the same!! When you said fibomyalgia caused by anxiety...I was a little surprised. That doesn't really seem to fit. I am NOT a doctor and I know next to nothing about fibromyalgia but I understand why you would disagree with the diagnosis or at the very least have a lot of questions. Unless you are in a very small town I would say not to worry about not being able to get help because you disagree with the doctors. You can always find another doctor and if the one you have now isn't working for you... If you are in a small town I understand how words travels fast and you might have to drive quite a distance to get to another doctor. But what they all too often forget is that WE ARE PAYING THEM for a service. They are supposed to be working for us so you should always be able to voice your doubts and questions! I know that isn't generally the way it works in reality but it should. I wish I had some wonderful answer for you but I am still going through the same thing myself and I just moved to a new area so it is like starting all over and trying to find doctors who will listen. I have had doctors who were caring and listened very well!! You should never be made to feel like you can't say exactly what is on your mind as far as your diagnosis!! I am so sorry you are going through this!! -Krystal Yeah dehumanised is probably the best word for it, I just feel now that like... okay if its cancer i dont care, if its heart disease I dont care. just give me something ill take anything its not a good way to think but its kinda hard to not think like that when you have grown over the years to know that you have been misdiagnosed and your family and friends wont believe you... you just want it to be something else so you can shove it in thier faces and say "HA told you so" although in the case of something serious my reaction would be a lot different at this point im just worried that it is something serious and that by the time im 18 or 17 and can travel on my own it will be to late (not that ill be dead, just that whatever I have will have caused to much damage by then) Anyway, reading that you are in a similar situation and your words of encouragment has really helped me :) I know some day Ill get to the bottum of it, I just dont know when Thank you :D
    NOT Fibro!!! 9 Replies
    • January 7, 2010
    • 07:30 PM
    • 0
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  • Yeah dehumanised is probably the best word for it, I just feel now that like... okay if its cancer i dont care, if its heart disease I dont care. just give me something ill take anything its not a good way to think but its kinda hard to not think like that when you have grown over the years to know that you have been misdiagnosed and your family and friends wont believe you... you just want it to be something else so you can shove it in thier faces and say "HA told you so" although in the case of something serious my reaction would be a lot different at this point im just worried that it is something serious and that by the time im 18 or 17 and can travel on my own it will be to late (not that ill be dead, just that whatever I have will have caused to much damage by then) Anyway, reading that you are in a similar situation and your words of encouragment has really helped me :) I know some day Ill get to the bottum of it, I just dont know when Thank you :D I am glad that I could say something that helped. And I know what you mean when you say I just want an answer. I have a friend who deals with chronic pain and she made the statement that she felt very guilty because she wants them to find something. She said I feel like I am wishing to be very ill. I have felt the same way for a long time too. And I say this...to everyone who tells us we are crazy or hypochondriacs or those who are just insensitive to the fact that we are in pain whatever form it comes in...WE DON'T WANT TO BE SICK!! BUT WE ARE SICK AND NO ONE KNOWS OR HAS BEEN ABLE TO FIGURE OUT WHAT IS WRONG. WE ARE NOT WISHING FOR SOME HORRIBLE DIAGNOSIS!! WE ARE JUST HOPING FOR ANY DIAGNOSIS THAT ALLOWS FOR REAL TREATMENT THAT WILL MAKE US BETTER! BECAUSE RIGHT NOW WE DON'T EVEN HAVE THAT...PROMISING TREATMENT OPTIONS. AND YES, THERE ARE ALWAYS PEOPLE IN THIS WORLD WHO HAVE IT WORSE. YOU COULD SAY THAT OF JUST ABOUT ANYONE IN ANY SITUATION AND JUST BECAUSE WE SPEAK OF OUR PAIN IT DOESN'T MEAN OUR HEARTS DON'T BREAK FOR SOMEONE ELSE'S PAIN. BUT OUR PAIN IS REAL ALSO AND WE HAVE TO LIVE WITH IT DAY IN AND DAY OUT. SO PLEASE DON'T JUDGE OR RIDICULE US!! LIFE IS HARD ENOUGH AS IT IS. WE ARE JUST TRYING TO FIND ANSWERS AND HELP AND YOUR CRUEL WORDS OFTEN HURT ALMOST AS MUCH AS WHAT WE ARE DEALING WITH. Don't ever give up looking for that answer! You and ONLY you know your body and you know when something is wrong. I have another friend, and as I'm writing this it is frightening how often this happens, who has been dealing with an illness for 18 years and only this year got an actual diagnosis. I remember back when it started the cruel comments people made about her making it up and looking for attention but now she can go back to them and say HA HERE IT IS...THIS IS REAL! And some day you will be able to also! Unfortunately we often have to be our own investigators so chart your own medical history every day and see if you notice patterns. You never know when or where you might get that aha moment or something you tell a doctor might resonate. I wish you all the luck in the world!!! I hope you are feeling better!! Please take care of yourself!! And never, never doubt yourself! -Krystal
    Krystal D 26 Replies
    • January 22, 2010
    • 04:33 PM
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